You and Your Child with HIV - LIVING POSITIVELY
You and Your Child with HIV
- LIVING POSITIVELY
A booklet for caregivers of children living with HIV
and for the children themselves so that
they can be partners in their own health care.
by
Noreen Ramsden
Cati Vawda
CHILDREN’S RIGHTS CENTRE
2007
‘
You and your child with HIV - Living positively
ACKNOWLEDGEMENTS
MEDICAL DISCLAIMER
We wish to gratefully acknowledge the contributions of Herman Reuter
(Médecins sans Frontières), Tammy Meyers (Harriet Shezi Children’s
Clinic, Chris Hani Baragwanath Hospital), Gayle Sherman (Big Shoes)
in reviewing the draft and making recommendations which we
gratefully accepted.
This booklet is to help you care for your child.
It cannot replace medical advice and treatment.
We hope that this booklet will give you information to better
understand what health workers tell you, and to help you know
what to expect or ask for at your clinic or hospital.
WHAT DO WE MEAN BY TREATMENT?
ILLUSTRATIONS
Treatment can mean the way we talk to people and what we do for
them. We should treat children gently and not shout at them or hurt
them.
Len Sak
ENDORSEMENTS
The following organisations have endorsed this book:
AIDS Law Project
Treatment Action Campaign
ARK (Absolute Return for Kids) South Africa
Treatment can also mean what we do to help someone who is hurt or ill.
This can be giving medicine to swallow or by injection, or ointment to
rub on a sore, or bandaging a sore leg, or keeping someone in bed to
have a good rest. It may mean eating healthy food or taking vitamins.
For emotional hurt or distress, the treatment may be counselling and
support-group meetings.
Medical treatment may be given by a doctor or a nurse. There is a
Medical Council to make sure that doctors and nurses are properly
trained and to hold them accountable if they do not do what they are
supposed to do for people who come to them with health problems.
There is also a Medicines Council to make sure that the medicines
have been tried and tested on thousands of people before they can be
given out to anyone who may need them.
Proceeds of any sales will be used for the promotion
of the work of the Children’s Rights Centre.
COPY LEFT
The Children’s Rights Centre retains copyright of this book, but the use
of any portion for education and development is encouraged, as long
as the Children’s Rights Centre is acknowledged.
Children’s Rights Centre
Many people go to a traditional healer for advice and treatment.
Traditional healers also have a Council to oversee their work. Some of
the traditional medicines are also being tried and tested to make sure
they are safe. The Traditional Healers’ Council is telling everyone that
they cannot cure AIDS with their treatments, but they can help people
to stay healthy for as long as possible.
You and your child with HIV - Living positively
Some medicines we can buy in the supermarket or the chemist. We
have to be careful how we use these medicines. Laxatives, cough
mixtures, aspirin and paracetamol (Panado®) and others can all be
dangerous, especially to children, if they are not used properly. A
medicine that may be safe on its own may become unsafe if used with
other medicines. It may stop another medicine from working properly.
If you or your child is on anti-retroviral treatment (ART) you need to
make sure that your doctor or nurse knows all the medicines,
traditional and western, that you or your child are using.
WHAT DO WE MEAN WHEN WE SAY CHILDREN?
When we say child or children, we mean all ages from birth to those
under the age of 18 years old. We also use the term young people
when we are talking about teenagers.
We use different words at different times because sometimes we are
talking about all children, and sometimes we are talking about a
particular age group.
ABOUT THIS BOOK
This book is written about healthcare for children living with HIV.
We hope you will find it helpful.
If you are able to help your child, you will feel better.
The more you know about HIV, the more you will be able to help your
own child. Older children may be able to use the book so that they can
be partners in their own healthcare.
LOOK FOR WHAT YOU WANT TO KNOW
The book has different parts, and you need to look for what will help
you, NOW:
If you are worried that a child might have HIV and want to know
whether to take the child for testing, go to page 11.
If you have just heard that your child has HIV, and you do not know
where to start, go to page 17.
If your child with HIV is sick, go to page 71.
If your child is going onto anti-retroviral treatment for the first time, go
to page 106.
If you need help in caring for yourself, and helping yourself to feel
better, go to page 24
For advice on telling a child he or she has HIV, go to page 29.
There are also facts on the following:
Choosing between breast-feeding and bottle-feeding, page 53.
Making good food better, page 59.
Keeping clean and healthy, page 47.
and
What is HIV and how do you test for it? Page 11.
How the doctor decides when a child needs anti-retrovirals (ART),
page 107.
Meet the drugs – what are anti-retrovirals? Page 109.
Helping a child to take medicines regularly, page 111.
AND MORE … See the Table of Contents for information on other pages.
IT IS ABOUT BABIES AND CHILDREN
It tells you about caring for babies and children who have HIV.
It does not have all the information needed for teenagers, as they have
their own special needs. But we hope that they will find it useful, too.
Children’s Rights Centre
You and your child with HIV - Living positively
TABLE OF CONTENTS
PART 1 – How can my child and I feel positive?
7
Ten things I can do to help my child
Learning about HIV and HIV tests
The first days or weeks after I hear that my child has HIV
Helping myself feel better
Telling my child about being HIV positive
8
11
17
24
26
PART 2 – Keeping healthy at home
45
Partners in good health
Keeping healthy and clean
Protecting my child with good food
Partners in medical care
46
47
53
63
PART 3 – HIV stages and treatment
71
Understanding HIV and the path stages it follows
Caring for your child’s health from stage 2 onwards
Possible health problems – opportunistic infections
Anti-retroviral treatment (ART)
If my child is very ill, what can I do at the end?
72
76
90
106
120
PART 4 – Referrals for specific problems
121
Dealing with discrimination
If a child has HIV as a result of rape or sexual assault
Crisis centres and other resource organisations
122
125
129
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PART 1 - Living Positively
PART 1
LIVING POSITIVELY
How can my child and I feel positive?
This part of the book tells you about the following:
1. Ten things I can do to help my child
2. Learning about HIV and HIV tests
3. The first days or weeks after I hear that my child has HIV
4. Helping myself feel better
5. Telling my child about being HIV positive
You and your child with HIV - Living positively
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TEN THINGS I CAN DO FOR MY CHILD
1) I can show my child that I love him or her.
I can give hugs, and smiles.
I can talk to my child and listen to my child and answer any questions
they
may have.
.
In this way I can help my child to be a partner in his or her own health
care.
2) I can help him or her to feel safe.
I can keep the child near me, when he or
she is frightened. I can keep to the usual
routines and discipline in the home, those
that we are used to, so that everything feels
normal.
3) I can keep my home and family extra
clean, and teach my child about keeping
himself or herself clean.
This will help prevent infections.
4) I can give my child healthy food,
often, during the day.
Small meals given OFTEN will help the
child to be strong.
6) I can take my child regularly to
the clinic, for check-ups.
I will make sure that my child gets the
usual immunisations and have his or
her health checked.
7) I can help my child get early
treatment for any illness.
The sooner an infection is treated, the
faster he or she gets better.
I will help my child to understand the treatment and to take
part in self-care.
8) I can help my child by encouraging him
or her to go to school.
When the child is old enough, he or she
should continue schooling.
Children with HIV need to be treated the
same as other children, and not feel different.
They should attend school when they feel
well, and get help to keep up when they are
not well.
9) I can encourage my child to make friends
and to play happily.
Happiness is part of good health, and fresh air
and exercise help, too.
10) I can encourage my child to help others,
and to help in the home.
Caring for others is part of good health, too.
5) I can make sure my child gets
enough sleep and rest.
Enough sleep at night helps make us
strong – your child also needs to rest
during the day if he or she is tired.
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PART 1 - Living Positively
1
Good health concerns the WHOLE CHILD – his or her body as
well as mind and heart. It concerns behaviour, relationships and
inner feelings.
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You and your child with HIV - Living positively
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They may mirror your feelings or they may react to your feelings. If you
are sad, the child may feel sad or confused. If you are happy, the child
will feel better.
You need to be brave and to live positively not only for your sake, but
also for the sake of your child. You can be a “cushion” between your
child and the hurtful things in the world.
You will not always feel happy and hopeful. When you have strong sad,
angry or fearful feelings, make time for yourself. You may need another
adult with whom to share your concerns.
KEEP HOPEFUL – GET TREATMENT FOR YOUR CHILD
Remember that ARV treatment helps children to feel well and be
strong.
It does not cure HIV but it DOES make it like other on-going diseases
for which you must take medicines daily – rather like “sugar” disease
(diabetes).
When mothers who
are HIV positive have
babies, NOT all their
babies will be born
with HIV themselves.
LEARNING ABOUT HIV AND HIV TESTS
Why test your baby or child for HIV?
It is important to find out if your child has HIV at an early stage so that
you can make sure that he or she gets the best care possible and
stays as well as possible. Good food, extra cleanliness and early
treatment for any health problem will be needed.
Doctors say it is better to start treatment with medicines early for
babies, because they want to help keep the baby’s protection systems
as strong as possible. Do not wait until your baby is very sick.
What is HIV?
The HIV is a living thing called a virus – a very, very small germ.
Millions of HIV could fit on the point of a pin. We
have pictures of the HIV (seen here on the right)
taken with special cameras.
When the HIV gets into the body, it uses a
person’s blood to make more and more of itself. Our blood is made up
of very small parts called cells. There are two types of blood cells – red
and white blood cells.
The red blood cells are the worker cells that carry food that we have
eaten, and the air we have breathed, around the body. The red blood
cells also take waste away.
The white blood cells guard us from infections. The guard cells are
part of our immune system that keeps us well. The most important
guard cells are called the CD4 cells.
HIV uses the CD4 cells to make more of itself. When it has used the
CD4 cell to make lots of copies of itself, the CD4 cell is destroyed.
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You and your child with HIV - Living positively
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PART 1 - Living Positively
2
Remember that children will notice and respond to how you are
feeling.
CD4 cells
Some blood cells are white cells that help us fight off infections. The
most important white cells are the CD4 cells. These are the cells that
the HIV virus attacks and kills. At first the body can just keeping making more CD4 cells, but after a while the total number of CD4 cells
gets smaller and smaller.
What tests are there for HIV?
CD4 count
A CD4 count is the number of CD4 cells in a small amount of blood.
If there are fewer CD4 cells than usual, it can be a sign that there is
HIV in the blood, killing the cells. This test also shows how well or
badly the body is doing, fighting the HIV. For example, the higher the
CD4 count is, the better the body is doing against the virus.
There are a number of different HIV tests. Some of them test for signs
that the HIV virus is in the blood by testing for “antibodies”. Some of
the tests are for HIV itself.
Some HIV tests check how strong the body is to protect against infection; they do this by counting how many CD4 cells there are in the
blood. This is called the CD4 count.
Some tests check for the virus itself to see how much HIV virus there
is in the blood. This is called the “viral load”.
USEFUL WORDS – What they mean
Immune system
The cells and parts of the body that protect against illness or infection.
Antibodies
An antibody is an “ID” made by the “guard cells” when germs enter
someone’s body. There is an ID for each illness caused by a germ –
measles, chicken pox and so on – each germ has its own ID. This ID
helps the “guard cells” to recognise an enemy infection and to fight it.
When HIV enters the blood, the blood makes a new ID for it, and this
can be found in the blood of someone who is “positive” for HIV.
Percentage or percent
This means how much of every hundred parts – 15 percent means
15 parts of every 100 parts, 50 percent is 50 parts for a hundred
(half) and so on.
Children under 6 years have CD4 counts measured as a percentage.
This may be shown by this sign “%”.
HIV and AIDS
These letters are a short way of saying Human Immune-deficiency
Virus and the Auto-Immune Deficiency Syndrome. These terms are
saying that the immune system is “deficient” and not working properly.
The word syndrome means that a number of infections and medical
problems are all working together to make someone ill, in this case
with “AIDS”.
Testing for signs of the HIV virus – antibodies
Viral load
The HIV virus is spread throughout the body. The amount of virus
carried as a load in the blood is called the viral load. It counts the
number of HIV in a small amount of blood.
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The most commonly used antibody test in South Africa is the Elisa
Test.
It takes about a week to get the results of this test.
You and your child with HIV - Living positively
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PART 1 - Living Positively
When the HIV destroys the CD4 cells, the body makes new CD4 cells.
But when there is lots of HIV in the blood the body cannot make the
new CD4 cells as fast as the HIV destroys the old CD4 cells. This
means that there are fewer and fewer CD4 cells left to fight infections.
And this means that the person gradually gets weaker, and gets sick
more often.
There are other tests that are quicker. They are called Rapid Results
Tests, and they can give an answer in about 15 minutes. They are not
always right, so if a Rapid Results Test says “Yes” for HIV antibodies,
you will need to have this checked by the Elisa Test, or a different test.
Saliva instead of blood can be used for some of the tests.
will be their mother’s antibodies that are showing up. Gradually the
mother’s antibodies leave the child; this happens when a baby is
between 12 and 18 months old. If they are tested again, usually at 18
months, and they still have antibodies it means that they are HIV
positive, themselves.
Testing for the HIV virus itself
There are also tests for the HIV virus itself, and not just the antibodies
made by the blood.
Counselling – Before the Test
Before your baby or child is tested, you yourself must be counselled
and advised. Ask what test will be used, and how long it will take to get
the result, as well as any other questions you may have.
Counselling is advice and information. It is a chance for you to
talk about the test and your feelings about having the test done.
It can help with any bad feelings you may have. A nurse, doctor
or a counsellor can do it.
From a young age, the child should be told in a simple way what is
being done to him or her and why. Older children need more
explanation and counselling. If your child is older than 8 years,
consider whether your child should also be counselled. All children
older than 12 years, should also be counselled, and do not need to
have an adult with them for the counselling or testing.
My baby has HIV antibodies – is it really infected?
In children younger than 18 months, the HIV antibody tests do not
always mean that the child is infected.
A mother who has HIV passes her antibodies on to her baby. These
babies will seem at first as if they have HIV in an antibody test, but it
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Children’s Rights Centre
The test usually used in South Africa to find the virus itself is the
Polymerase Chain Reaction (PCR) test. It is also called the HIV DNA
PCR test, or qualitative PCR. This test is similar to the viral load test,
but tests for the virus inside cells instead of in the blood.
It is accurate provided that the baby is over 6 weeks old and has not
been breast-fed for 6 weeks before the test.
PCR is recommended for children younger than 18 months because
caregivers need to know if a child is infected so that they can give him
or her special care and treatment, as soon as possible.
This special treatment includes a medicine called co-trimoxazole and
will include anti-retroviral therapy as soon as he or she needs it.
Are you adopting or fostering a child?
You have the right to know if the child has HIV if you are adopting or
fostering a child – as you have the right to know any health problems in
that child so that you can be prepared to care properly for the child.
You and your child with HIV - Living positively
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PART 1 - Living Positively
Blood is taken in a tube and two tests must be done from this blood to
see if it has HIV antibodies.
PART 1 - Living Positively
If you have just heard that your child has HIV, and you do not
know where to start…
USEFUL WORDS
PCR
PCR – Polymerase Chain Reaction test – a test for HIV in the blood.
Virus
A very small living thing that can make someone ill if it gets into his or
her body. It is the smallest kind of germ.
There is more information about HIV and AIDS towards the end of
this book.
3
THE FIRST DAYS OR WEEKS AFTER YOU
HEAR THAT YOUR CHILD HAS HIV
Knowing that your child has HIV will change your
life, but do not give up hope!
There are children in other countries, born with
HIV, who started anti-retroviral treatment (ART)
and have reached the age of 40 years! Some
younger women who have been living for years
with HIV have even had their own babies - who
do not have HIV!
We never know how long someone will live,
but we can make the most of every moment
of every day.
People who are living with HIV often say how terrible they felt when
they first heard their status.
They did not want to believe that they were positive and felt shocked
and afraid.
Some say they felt angry at times and at other times felt that their lives
were over. Many felt that they were useless and of no worth any more.
But with help and support they have learnt to live POSITIVELY,
with hope and courage and confidence.
The aim of this book is to help you and your child to live positively.
We hope to help you feel better and stronger about the difficulties in
your lives.
We hope you will get more knowledge and skills to help you cope with
life.
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You and your child with HIV - Living positively
17
Children living with HIV need their caregivers and families and friends
to help them to live positively.
Children, especially younger children, often feel what their caregiver
feels even if they do not understand why. When the caregiver is sad
they may feel sad and anxious. So it is extra important for adults to
find help so as to live positively for themselves and their children.
Living positively means that you keep up hope.
It means that you get on with daily tasks and live the best way you can.
You can help your child living with HIV to live positively by taking care
of his or her heart, mind, feelings and soul as well as caring for his or
her body.
Sometimes we are so busy caring for our children’s bodies by cooking
for them, feeding and washing them that we do not think of their
important inner needs – their heart-felt needs. But it is from the heart
that feelings come – and feeling good or bad will make us live
positively – or not!
You can help children by making them feel
loved and safe
You will need to be patient and kind. Small children usually show their
unhappy feelings by crying a lot and demanding attention. They often
become more babyish – they may go back to wetting themselves or
sucking their thumbs, for example.
Older children also need to feel safe and loved. They may withdraw
and refuse to join friends and family. You will need to be patient as they
may show their unhappy feelings in behaviour that seems naughty.
They may be angry and unhelpful. They may fight with other children
and break things. Correct them gently, and continue to show that you
love them. Tell them you will stay close to them and help them at this
difficult time.
You can help children to calm their unhappy
feelings
What bad feelings may children have?
Children who do not feel well and often have to go to clinic or hospital
for medical care are likely to feel unhappy.
• They may have bad feelings about their bodies and feel ugly
or weak.
• They may get worried about being different from other
children long before they know the name of HIV or are told
their status.
• They may feel lonely and afraid.
• They may feel anxious about what is going to happen to them.
• They may feel they have done something wrong and are to
blame.
• They may feel angry or sad.
• They may feel worthless and not loved.
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Helping children feel better
Children’s Rights Centre
We often feel better if we can talk about how we feel with someone we
love.
It is the same with children but more difficult for them as they often do
not have the words to talk about how they feel.
You can help learn the words for different feelings. You can also help
them to show their feelings without words, in actions.
When we put our feelings into actions it also helps us to feel better.
We may sing sad songs if we feel sad, or dig angrily in the garden if
we are angry, for example.
You and your child with HIV - Living positively
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PART 1 - Living Positively
HELPING CHILDREN TO LIVE POSITIVELY
answer and ask the child to talk about how he or she feels when angry
and what makes them angry.
Children will also show their feelings in the way they play, and this is
good for them.
If you watch them play, you will understand their lives better and be
able to help them.
The child who is rough and fighting is often angry or may be frustrated
– but you can also see feelings like jealousy and fear and lack of
confidence in the way children play.
You can encourage children to talk about feelings and to show different
feelings in songs and music such as a lullaby or a march or a gospel
song or dance.
Copy the expression on the face you have chosen, and perhaps ask
your child to copy it too. You can use a mirror if you wish. Make it fun,
and laugh at the funny faces you can make.
Then ask the child to choose a picture, to copy the expression on the
face, and to talk about how that person is feeling.
You can also ask the child to choose a face that shows the way they
want to feel. They can talk about things that they can do to help them
feel like this, such as singing a happy song or hearing a funny story.
THIS IS NOT A TEST AND DO NOT CORRECT THE CHILD IF YOU
THINK THEY HAVE MADE A MISTAKE. CHILDREN CHOOSE WHAT
IS IMPORTANT TO THEM.
They can also draw and write stories about how they feel.
Children under five years old often find it easier to talk to a doll, or a
toy animal! Adults can pretend that the toy can talk, and talk to the
child that way.
Even very young children, under three years old, can show how they
feel, and start to understand words about feelings.
Remember that we often feel better if we can talk about
how we feel with someone we love.
BUT – TALKING ABOUT FEELINGS CAN MAKE THE CHILD UPSET,
SO BE READY TO STOP AT ANY TIME.
ALWAYS KEEP SUCH CHATS SHORT and
ALWAYS END IN A HAPPY AND COMFORTING WAY.
For example, you may feel that the picture is of someone frightened
and the child may think it is a person who is angry. Accept the child’s
You can tell the child that you think he or she is brave and clever and
that you are proud of them. You may want to hug the child, sing a song
with them or tell them a favourite story.
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You and your child with HIV - Living positively
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PART 1 - Living Positively
For example, show your child these pictures and choose one to point
to.
Some adults may think that children are wasting time when they play
or read stories or sit and listen to the radio or watch television or talk to
their friends.
Yes, they do need to help in the home, and do their homework.
But children need happy activities during the day for good health and
positive living.
The best play and leisure activities for children give them some
freedom to choose. When they can choose between playing with a
doll or with a ball, for example, they gain confidence and no longer feel
helpless. When you can, encourage them to choose what to play and
who to play with.
We find it difficult to understand and control our feelings,
and for children this is even more difficult. They have
very strong feelings and they are less able to control
themselves. Children of all ages find it difficult to put
their feelings into words. That is why small children may
have temper tantrums where they completely lose control and scream and kick and hurt themselves or others.
Some children need help putting words to their feelings.
Talking about feelings and showing feelings in actions
can help us sort out how we feel, and help us to control
our feelings.
Learning and understanding more will help you live better with HIV.
Make a plan to find out more – where will you go?
Clinic? Drop-in centre? Other?
Who will you talk to – A friendly nurse? A counsellor? Another person
who you trust?
Good leisure activities are often shared. Playing with others helps
children to feel they belong to a group and family, and are not alone.
Look on page 24 - “Helping children to feel better, feel stronger”
Feelings can be mixed
We all have a mixture of feelings and when we are
unhappy or upset all these feelings seem to be stirred
up. We may feel loving - and angry. We may feel afraid and brave. We may want to be hugged one minute and
the next minute we want to push people away. We laugh
and then we cry. We may feel we are to blame one
minute and then the next minute we are blaming others.
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You and your child with HIV - Living positively
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PART 1 - Living Positively
Help the children to play and have
happy activities
HELPING MYSELF FEEL BETTER
PART 1 - Living Positively
4
WHAT ACTIVITY MAKES ME FEEL BETTER WHEN I AM
WHAT CAN I DO TO MEET MY OWN SPECIAL NEEDS, FOR
MYSELF!
As a caregiver, you are carrying a heavy burden.
You need to stay hopeful and positive. This will help you to feel better
and it also may help your child, as he or she may mirror your feelings
and attitudes. You need to stay calm and brave to help your child feel
safe.
Sad
For your own sake and for your child you need to plan and organise
ways to help yourself feel better.
Here are a few – YOU CAN TICK THE ONES YOU WILL TRY:
Talk to family and friends.
Plan to meet with family members and friends to discuss
problems and get practical and emotional support.
Join a support group: look for a support group with similar
problems that you can join. They will help you, and you can
help them!
Help yourself to relax.
AND
…………………………………..………...................
Scared ………………………………..…………....................
Alone
………………………………..…………...................
Angry
………………………………..…………..................
……………….………………………..……...….......
Make a list and check it from time to time.
Think what helps you to relax and feel better. Plan to do one or more
of these comforting things when you feel stressed. Do you like
• Listening to music or your favourite radio programme?
• Watching a favourite TV programme?
• Gardening?
• Going to church?
• Going for a walk?
* Visiting a friend or telephoning?
• Cooking a favourite meal?
• Helping someone else?
AND .........................................................
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You and your child with HIV - Living positively
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TELLING MY CHILD ABOUT HIV
Or they may worry that something is wrong, and feel that they are
different from other children. But they may be afraid of discussing it, or
not have the words to talk about it.
Try to make HIV and AIDS ordinary
Remember that illness is only one part of life and not all of it! There
are still many good things in the child’s life, such as your love and care.
HIV is very similar in some ways to diabetes and asthma and other
on-going diseases.
We should all learn to be open about HIV and to make it an ordinary
illness.
We should NOT treat it as a terrible thing you must whisper about.
We need to make sure that everyone knows that with ARV treatment
HIV and AIDS is treatable, even though it cannot be cured. It is not a
death sentence.
Some reasons why you may not wish to tell a child that he or she
has HIV
You may not feel ready. You may worry that if you tell your child he or
she will feel bad.
You may think that your child is not ready.
You may think that your child will not understand.
You may be afraid that your child will blame you.
You may be worried that your child will feel bad about it.
You may be afraid your child will talk about being positive and
that family and neighbours will be unkind to you.
Some reasons why you should tell your child that he or she has HIV
It is good to talk about HIV in the family as you would about any illness
or event.
But also look out for and share positive news with your child about HIV
and AIDS from the radio or television, or in books or magazines. Look
for a true story of a person living with AIDS (PLWA) who is cheerful
and positive. There are also TV stories about people living with AIDS
that you can watch and discuss with your child. The children’s TV
series Takalani has a puppet with HIV as one of the characters. Or
you and your child might be able to meet and talk with people who are
living with HIV.
To tell or not to tell – should you disclose to your child?
You can choose whether to tell or not to tell your child about their HIV
status.
But remember that children may learn about their HIV status without
being told directly. For example they may overhear you or others
discussing it.
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THE CHILD CAN BE TOLD THE FACTS. If you tell your child, you can
tell him or her correct information, and make sure your child has
understood it. You can make sure that the child does not believe wrong
ideas about HIV.
THE CHILD CAN FIND OUT IN A KIND AND LOVING WAY. You can
choose how to tell, in a way that you feel is best for your child. You can
be ready to tell, and not be taken by surprise when the child asks. The
pain of knowing about their status will be less if you choose a time
when you can tell them in a relaxed way, showing that you love them
dearly, and comforting them. If you do not tell them, children might be
told or guess their status when no-one is around to support and
comfort them, and suffer pain in silence and without help.
YOU WILL NOT HAVE TO KEEP SECRETS FROM THE CHILD.
Keeping secrets, especially for a long time, is hard and stressful for all
who know the secret and have to keep it bottled up. Children often
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5
YOU WANT YOUR CHILD TO TRUST YOU, and being open with the
child about something so important will help to strengthen this trust.
Children are better able to deal with the truth about their lives than we
may realise. They may be sad and go through all the normal feelings,
but if they know the truth, then you can help them to cope.
TELLING YOUR CHILD HIS OR HER HIV STATUS
If you choose to tell your child you will have some important decisions
to make. You need to choose the time to tell and decide when and
how to tell. These are some of the most difficult decisions facing adults
caring for children with HIV. You may want to talk about these decisions
with someone you trust, who also knows your child.
Who should tell my child?
If you are comfortable telling your child, then this may be best for the child.
IT MAKES CHILDREN STRONGER. When children share in
decisions made about their healthcare and they know you trust them,
they feel more in control of their lives and are healthier and happier.
You can help them be ready to take medication or ART, and to watch
their own health. If children know their HIV status you can share with
them information that can improve the quality and length of their life.
COPING WITH DISCRIMINATION. You can also help children living with
HIV, as you talk about their life, to prepare for possible discrimination.
Ask the child what he or she would do if people point a finger at them?
Help them to plan to be strong. They may say they will take no notice
or they may decide to tell people that Baba Mandela (and other leaders) say one must not be unkind about HIV and AIDS.
TEACHING LIFE SKILLS. Many children with HIV are babies or still
under 5 years, but there are an increasing number of older children
who also have HIV. Older children (teenagers) need to know about
condoms and “safe sex” so that they will not infect a partner, or get
more viruses (a higher viral load) from an infected partner. They also
need to know the risks of taking drugs or alcohol, or smoking.
But because there are such strong feelings between children and their
parents or caregivers, it is sometimes more difficult for them to talk
about painful things.
If you are not ready, but you want your child to know or begin to know
about their HIV status, then think about other people with whom your
child would be comfortable. This might be a family member or friend; it
might be the doctor, nurse or counsellor at your clinic or hospital. Make
sure whoever is telling your child has correct information and encourages
the child to ask questions. If they do not know something, they should
tell the child that they will find out.
You may want to be there with your child, even if you are not the
person doing the telling, so that you know exactly what was said, and
how your child seems to have felt about it.
Where and when to tell?
IT IS THE RIGHT THING TO DO. Children have the right to know
important information about their own bodies and lives, when they are
old enough.
You may want to have several chats with your child about HIV. In planning
these talks with your child about his or her HIV status, it may help to
choose a place and time where you and your child can be comfortable
and have time to talk. Just one talk will usually not be enough, and you
need to be ready for more discussion. Encourage the child to choose
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guess there is a reason about why they get sick more often than their
friends and need to take medicines every day – and because you do
not discuss it, they may feel it is a terrible secret or they may blame
themselves.
When planning to tell a child about having HIV, here are some tips:
• Find somewhere private where you can sit comfortably.
• Make sure you won’t be interrupted.
• Plan enough time to talk and listen, as quickly or slowly as
your child needs.
• Have other things to do between periods of talking, so that
your child can take a break, or have something else to do if
he or she wants to stop talking.
• Think about what you are going to do
afterwards – something pleasant!
• Who needs to know that you have told
your child – make a plan to tell them
about it.
Talk when the child is ready
Sometimes children will start to talk about things
that are troubling them in places you do not
expect. For example, you may be doing a
household task together or walking together to
the market when the child starts to talk about
his or her worries. If the child wants to tell you
there, listen to him or her as it is important to
take this opportunity when he or she is ready to
talk. Do not delay by trying to find the “right” place as by then the child
may then not want to talk.
Let the child speak to you. It is very easy to talk FOR someone, and if
children have difficulty finding their words, you may be tempted to “put
words in their mouths”. Rather be patient and allow them time to tell
you in their own way.
To help, you can make encouraging sounds or repeat the last word or
sentence that the child said. You can also ask “open” questions. These
are questions that need more than a yes or no.
Example: Closed question:
Do you feel sad?
Open question:
How do you feel?
Do not assume you know what the child is trying to tell you. Tell him or
her what you think you have heard from them, and ask if that is right,
and then give them the chance to tell you again if you have got it
wrong.
Talk to children in a language they understand. Do not use new words
that they have not heard before as this may confuse them. If you use a
medical term, explain to the child what it means. As a rough guideline,
for children under about 7 or 8 years old, the word HIV or AIDS, would
most probably NOT be used. Instead you can talk about being sick
and well, and about keeping well. However, each child is different, and
it is best to be guided by your child.
Some children from a very young age may want and need to have
more detailed information as part of their coping.
Active listening
Closeness to the child is very important. Some children may want to
have their hand held or to have a hug. Others may want to have more
space, especially if what you are talking about is difficult. When the
child talks or asks questions, show you are listening by the way you sit,
what you say and by the expression on your face.
Answer any questions they have with honesty. You may not be able to
answer some questions. If this happens, you should tell the child that
you do not know. It is better to do this than to pretend you know.
If they have not understood something, do not criticise them. Children
will find it difficult to talk if they are made to feel stupid or that they
have done something wrong in saying certain things. They will find it
easier to talk if they think you understand what they are feeling. Help
them to understand by explaining more simply.
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some of the times and places, when he or she wants to share more.
When you talk with children,
love and understanding grows between you
Tell the truth
Never lie to a child. But you can choose how much of the truth your
child needs to know at that time, depending on age and maturity.
You must match the amount of truth you tell to the amount the child will
understand.
Most children under 4 years only understand “sick” and “well”. For
children at this age you can explain taking medicines by saying, “They
make you well” or “They stop you getting sick”. Some children may be
quite a bit older before they understand medical terms.
Some younger children and most older children can understand more,
and need to know more.
You can usually be guided by the questions they ask:
“Why must I take that medicine when I’m not sick?” Or
“My brother doesn’t take the medicine, so why should I?” Or
“I don’t want to see the doctor. I’m not feeling sick!”
know about HIV and AIDS, or more about some aspect of their illness,
then help them to find out.
You need to tell them who already knows about their illness and who
they can talk to for support and to find out more.
From between 4 to 9 years you can tell children a story about HIV and
AIDS. Below are three stories that may help to explain how HIV works.
You might like to choose a story called The Brave Guards, the Little
Baddies and the Big Baddies. This story is adapted from “Brave
Knights and Bad Dragons”.
But you may feel children will be frightened to hear about “fighting” that
is going on in their own bodies!
You may prefer a story about The Visitor who has come to live with the
child, and who has to be treated with respect!
Or you may like to tell the story of The Cattle and the Thief.
If you wish, you may tell an older child more than one story, explaining
that people have different ways of explaining HIV. Then you can talk
about the way the stories agree
with each other. An older child
may like to make up his or her
own story.
Help the child to understand that in order to go on feeling well they
must go to the doctor or clinic for check-ups, and take the tablets or
drugs they are given. They must also look after their health by keeping
clean, eating good food, cleaning their teeth and having enough rest.
Older children may ask directly about HIV and AIDS. If they want to
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Choosing what to say
You must consider carefully the age of the child and how much he or
she can understand. Make sure that the child feels free to ask questions – encourage this!
THE BRAVE GUARDS, THE LITTLE BADDIES
AND THE BIG BADDIES
In your blood there are Brave Guards who keep out the baddies that
make you sick. Brave Guards keep you well.
They are smaller than the smallest mark you can make with a sharp
needle!
They are not red like most of your blood.
The red blood takes food and fresh air round your body to help you
grow and be strong.
You can see the roads for your blood to go up and down, if you look
carefully at your wrist.
The Brave Guards catch any Little Baddies that get into your body to
make you sick.
Do you remember when you had a bad cold?
The Brave Guards fought the Little Baddies that gave you a cold – and
you got better, didn’t you?
Can you think of any other Little Baddies?
There are some that can give you a tummy-ache or a sore throat or
spots!
But – there are also BIG BADDIES that can get into your blood.
These are terrible because they stop the Brave Guards from being able
to do their job!
Then the Little Baddies can come and make you sick because the
Brave Guards are not there to stop them.
Special medicines can stop the Big Baddies and protect the Brave
Guards.
You have some of the Big Baddies in YOUR blood, and you need
special medicines to stop them from making the Brave Guards not work.
You must take the medicines every day to keep you well.
You can also help your Brave Guards to keep stronger than the Big
Baddies, by eating good food, keeping clean and having enough rest.
Can you draw a picture about this story?
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Story 2:
THE UNWANTED VISITOR
When we have visitors to our home we must treat them well and show
respect.
How do we do this? (Discuss this with the child.)
Sometimes we have visitors that we do not really like or want.
You have a very, very tiny visitor in your body that can make you sick if
it is not treated properly.
This visitor needs the special medicines that you take every day to
keep it quiet!
You also need good food and plenty of rest to keep yourself strong, so
that the visitor cannot make you sick.
When the nurse takes your blood at the clinic, she will have it checked
to see how strong or weak this visitor is.
The visitor will always be with you, but you can learn to understand it
so that you treat it properly and keep it weak!
Story 3:
MY CATTLE AND THE THIEF
My health is like cattle that I own - it is very valuable.
HIV is a thief that is trying to steal my cattle, my health.
This thief NEVER gives up as long as I live.
I can keep my cattle safe by building a big fence around my kraal.
Good foods and medicines are like this fence: they help to protect my
health.
I must take them every day.
Be prepared to tell a story over and over.
It is a good idea to get the child to draw pictures about it. They might
like to draw themselves as well. Let them tell you the story, if they
wish!
Children will react differently to stories. Check that the story is helping
and not worrying your child.
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Story 1:
An older child will most probably ask if there isn’t some way of getting
rid of the “Big Baddies” or the visitor or the thief, for good.
You should answer truthfully, saying something like “Not yet – but
clever doctors are finding new medicines all the time.”
When children want to know names then you can tell them about red
blood cells, and white blood cells (CD4 cells) and name HIV as the
problem.
PART 1 - Living Positively
NEVER TELL A CHILD THAT HIS OR HER BLOOD IS “DIRTY” as this
will make them feel that they are bad and have done something wrong.
AFTER DISCLOSURE
Children react differently to learning their HIV status
Every child will do, say and feel different things after they have learnt
they are HIV positive.
If you are telling your child yourself, then think about how your child
reacts or responds to other things, so that you can be prepared. If
someone else is telling your child, then share this understanding with
that person.
What can you say or do to help your child accept their status?
What can you do to comfort them if they are sad and afraid?
How can you help them if they are angry?
Look at HELPING MYSELF FEEL BETTER on page 24.
Some children may seem to take no notice of what you have said and
just want to do something else. Because they are quiet it does not
mean that they have no questions – perhaps they are frightened of
asking. During the next few days give them more chances to talk.
Other children may ask lots of questions, and you need to be prepared
to answer truthfully.
They may ask:
• How did I get it?
• Is there a cure?
• Will I die?
• What will happen to me?
• Have you got it?
Learn more so that you can answer these questions. The answers do
not need to be long or involved. If the child wants to know more, they
can ask more! If they ask, “How did you get HIV?” You should feel free
to answer, “That is private!”
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37
If you are unsure of the answer to a question, tell the child that you do
not know – and find out the answer from someone else or from a book
– or phone the AIDS HELP-LINE or Lifeline, their telephone numbers
are at the end of this book.
TRY TO END WITH SOMETHING HOPEFUL OR CHEERFUL
Do not talk about sad things for too long! Ask the child about his or
her favourite things and encourage children to plan happy activities.
BABIES HAVE SPECIAL INNER NEEDS:
Babies need more than food, warmth and cleanliness.
Babies need to be cared for by the same
person, day-by-day, so that each one learns to
know and trust that consistent caregiver.
Babies need to be held and cuddled –
physical touch.
Babies need to have someone to respond to his
or her crying – to be comforted.
Babies need to have someone respond to his or
her smiles, babbling or actions.
Babies need to be talked to and sung to from
birth.
Babies need to be smiled at often.
Special concerns for teenagers with HIV:
There are special challenges facing teenagers with HIV.
• Teenagers may already have issues in their lives. There are
many changes in their bodies and minds as they journey from
being a “child” to becoming an “adult”.
• Their emotions are very strong – for happiness or sorrow –
and they swing from one to the other - quickly and often.
• They are likely to be already saddened by knowing those who
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are infected and by losing family or friends to HIV.
• Often they are very sad, for a short while, then very happy,
then very sad again, and so on. We need to help them
understand this in their lives – that the bad moment will pass!
Help them to find something good in their lives to brighten the
dark times.
• For teens and adults, HIV is mostly passed on by having sex
with an infected person. This can be a great worry to any
young person who is still learning what it is like to be an adult
with adult sexual feelings. Adolescents are still developing
their own identity and values.
• HIV still carries a stigma (shame) and so it may be very hard
to share their status with friends and peers (unless they are
also infected). We must remember that teenagers need
friends their own age (peers) and that good peer relationships
are very important at this age.
• If they are in a sexual relationship there will be added worries
that might include feelings of anger, guilt and fear. If their
partner infected them there may be feelings of having been let
down and betrayed. Adolescents need consistent information
about HIV and AIDS and if sexually active, advice on safe sex
behaviour should be given.
For these reasons it is especially important that young people are
encouraged to be hopeful through knowing enough about ARV treatment. They need to learn to be confident in their ability to talk about
HIV to those whom they want to tell about their condition. They need
to have a support system, so they know where to get help and advice
when they need it.
But watch out for signs that the teenager is having difficulty in
leading an ordinary life. If he or she has problems with the usual
routines such as eating, sleeping, keeping clean and tidy, helping
in the home and going to school, then you should look for help.
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Let the child know which other people they can talk to about HIV and
where they can get support.
Teenagers up to 18 years are still children, but they cannot be treated
the same as small children. It is a challenge to learn how to help
teenagers to become responsible and able to care for themselves as
they grow through this developmental stage. As the caregiver, you are
responsible for protecting your child. You are also responsible for
helping your child to grow into a responsible and caring adult.
Example of a question by a teenager:
Isn’t it better NOT to know if I am
HIV positive?
If I had an HIV test and I was
found to be positive I would be
SO sad that I think it would make
me die sooner.
Talking to teenagers
Always be calm when talking to adolescents about their problems.
Young people are nearly adults. Talk to them in a way, which shows
you understand this.
By the time they are young people they should be able to take
responsibility for their actions. Show that you respect them as people.
If you are worried about their behaviour, tell them why this is the case.
Forbidding them to do something, without explaining why, may result in
them doing it anyway. Young people will respect your advice if you give
it in a reasonable, caring manner.
What you need to talk about with young people
Answer:
It can be difficult knowing your
status.
But when you know you are HIV
infected, you can do something
about it and this makes you live longer.
You know you should look for proper help, guidance and
support, so that you can come to terms with the situation and
learn to practice living positively.
Living positively means taking care of your health – health in
body, mind and heart – and practising behaviours that will stop
the spread of HIV to other people.
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You can phone ChildLine (08000 55 555) or LifeLine (look for your
nearest office) or speak to a counsellor at your nearest AIDS Centre.
See contact details on page 129.
Children’s Rights Centre
• You should talk to young people about the physical changes
that happen in their bodies at adolescence – talk about the
growth and development of a girl, and the growth and
development of a boy.
• You should also talk about changes in how they feel about the
world, themselves and other people. They are moving from
dependence to independence. They need to build their own
values and decide what their aims are for their lives.
• Talk about what happens when people have sex. Young
people can be weak and at risk if they do not know these
basic facts.
• Talk about sexually transmitted infections and unwanted
pregnancies and how these can be prevented through safe
sex.
• You need to talk with young people about relationships and
the natural wish for a loving partner. They may need to be
reminded that feelings of love often come and go at this age
and do not last long!
• Make sure they do not get forced or persuaded into having
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41
Adults sometimes feel unable, for both cultural and personal reasons,
to talk to children and young people about sex, and they just hope they
will find out some other way.
One of the results of lack of life skills is that young people, particularly
girls, sometimes get involved in relationships at an early age. They may
get married very early, or get involved in a serious relationship, or have
casual relationships. They could be searching for someone to give
them love. They may want to leave the home they are living in. They
may hope that the relationships will provide money or other material
benefits.
Unfortunately they may find that the relationship only adds more
problems to the ones they already have. Unfortunately, too, orphans
are even more vulnerable to these high-risk relationships.
TEENAGERS NEED
HOPE – for treatment and for a long life.
Teenagers have very strong feelings for both
sorrow and joy, and when they are sad they can
become despairing. We need to tell them
real-life stories of hope about people living with
AIDS.
ACTIVE RECREATION – they will also feel better with recreation, such as sport or cultural events that involve physical
activity. This will also allow them to get away from their problems for a
while, and have a break.
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SLEEP – teenagers need 9 hours of sleep at night, but often have real
problems in falling asleep early enough. They then want – and need to
sleep late in the mornings. Help them to do things that will relax them
and help them to go to sleep early enough for a good night’s sleep.
VALUES – of respect and care for self and others. Teenagers are often
not aware of the effects of their actions on others, and they need to
have this explained to them in ways they will listen to. This help will
them build happy relationships with others.
GOOD FRIENDS – of the same age. Teenagers will turn to any young
people their age, rather than adults, and so they need to be
encouraged to find a support group of young people with good values.
LIFE SKILLS – teenagers need encouragement so that they will want
to learn life skills for a healthy way of life – such as no alcohol or drug
abuse, no cigarettes, no unprotected sex, eating good food, getting
enough rest and generally taking care of their health.
When to talk to children about sex and relationships
Growing up and having a sexual relationship is normal. Try and be
relaxed about discussing the subject. Try to use the opportunities that
arise every day to talk to children.
Consider these three simple examples:
The goat has a kid.You can talk about how this has happened and then arrive
at how people have their young ones.
You might open a new condom and explain what it is for, as well as its proper
use and disposal.
There is gossip about a boy having many sexual partners. Talk about
meaningful relationships, but remember gossip should not be passed on.
Point out that gossip is hurtful, but do not avoid the topic.
Parents are the first “counsellors”
The earlier parents start talking with their own children, the better. Start
talking about how the body works when they are young. You do not have
to talk about sex at an early age. But if you get used to talking about
related matters, it will be easier for you when the children are old enough.
Children may need knowledge at a younger age than you expect!
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sex. They should exercise personal choices, and they have
the right to say “No”.
• Help them to say “no” to relationships they do not want.
• Talking to them may sometimes mean that they tell you about
a neighbour or family member who has abused them.
Knowing what has happened will be difficult but it will help you
to protect them.
Children will find it easier to talk to any counsellor (and this includes
parents and caregivers) about sex if they know you will listen to them.
If you show anger or great embarrassment when the subject is brought
up, they will not ask you about the things they do not understand. They
will not ask for your advice either. You may therefore lose the
opportunity to guide them and help them avoid problems.
One thing to remember always is that you have nothing to lose by
talking to children. You may not do it very well but if you talk to children,
they will know that you care about their future and they are more likely
to live in a safe way.
This part of the book tells you about the following:
IF YOU ARE LIVING WITH HIV – DO YOU TELL YOUR CHILD?
1. Partners in good health
If you are living with HIV, your children will be aware that you take
medicines and that you visit the clinic often. They may notice that you
get infections from time to time, and need treatment.
It is good to be open and honest if you can, and treat HIV as you
would any other infection or chronic on-going condition such as asthma
or diabetes.
2. Keeping healthy and clean
PART 2
PART 2 - Keeping Healthy
KEEPING HEALTHY AT HOME
3. Protecting my child with good food
4. Partners in medical care
It is good to tell your children because telling them will stop them
blaming themselves if you are sick or tired.
They will feel more involved in planning their future, as you can discuss
your plans with them and explain that even if you get very sick, you will
make sure that they are cared for.
They will feel pleased that you’ve shared things with them.
You can help each other remember the medicines and appointments.
Telling brothers and sisters
Remember how important brothers and sisters are to each other. They
are likely to be curious about each other. When the time is right,
helping them to talk openly will mean they can share information and
feelings, and support each other.
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45
PARTNERS IN GOOD HEALTH
2
KEEPING HEALTHY AND CLEAN
You and your family are partners in good health care. This is
sometimes called primary health care as it comes first and is most
important. It is about keeping well and preventing illness as far as
possible.
All children can catch infections more easily than adults, and so they
specially need to live a healthy life.
For good health care you should:
They need special care with cleanliness, as many of the infections like
colds, diarrhoea, chest infections and so on are spread through dirt on
hands or body, or in food or water, or dirt in the home.
• Keep your child, and yourself, and your home extra clean.
• See that the child eats healthy food, often during the day.
• Make sure the child has enough sleep and rest every day.
• Take the child to the clinic or to a doctor for regular check-ups.
• The clinic should give your child the usual immunisations.
• The clinic should also give Vitamin A twice a year by injection,
and multi-vitamin drops to take daily.
• Your child should also take Co-trimoxazole (Bactrim ®). This is
very important as it helps prevent chest infections. A child who
is born to a mother with HIV needs Co-trimoxazole (Bactrim
©), every day, from the time the baby is 6 weeks old. This is
given until the baby is tested for HIV. It is stopped if the baby is
shown to be HIV negative. If the child is found to have HIV, the
Co-trimoxazole is continued, life long.
• If the child gets ill, take him or her straight to the clinic or
doctor for treatment.
• If the medicine does not help your child within a few days, take
the child BACK to the clinic – there may be other medicines
that will help.
• Make sure that you ask for painkillers for your child if he or she
is uncomfortable or in pain.
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You should also teach children to do things for themselves.
THESE ARE SOME THINGS YOU CAN DO TO HELP KEEP
YOUR CHILD WELL
Protect the skin and it will protect you
• The skin needs to be kept clean and free from cuts and
rashes. It will then protect the body from germs. Skin
problems are very common in children with HIV (more so than
in adults).
• Keep dry skin from cracking by using a skin-lotion or
skin-cream such as Vaseline. Do not use Vaseline if the child
has pimples or a rash as it can make this worse.
• Use an “aqueous cream” instead of soap on a baby’s skin. Or
use a very gentle baby-soap.
Check your child’s skin every day
• If your child has raised pimples or blisters, get treatment from
the clinic as soon as possible.
• If there are cuts or bites, clean them carefully and often.
A cut may need to be covered until healed but the covering
should not get wet.
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1
• Watch for any redness or swelling under the skin, especially if
the skin feels hot. This might show an infection that needs to
be treated.
• Try to see that the child’s fingers stay out of his or her mouth!
Check the mouth and throat
• Check the child’s mouth every day. White patches in the mouth
or throat (“thrush”) need to be treated at once with medicine
from the clinic.
Clean hands
If you have no soap, then scrub the hands well in clean water poured
on them from a jug, and rinse with more clean water poured over them.
Do not use water in a basin. Do not use
a face cloth unless it is used with soap. If
there is no soap, then washing with a
face cloth or using water in a basin can
spread germs.
Dry the hands well, using a clean cloth.
Clean fingernails
• Pay special attention to keeping
your child’s fingernails clean,
cleaning gently and not
damaging the skin under the nails.
If nail clippers are used, they should be washed each time
with soap and hot water.
• Do not cut the fingernails too short as this can lead to skin
damage.
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• Give children clean water to drink after a milk drink.
• Wipe the inside of a baby’s mouth with a clean, soft, wet cloth.
Either boil the cloth or soak it for some hours in soapy water to
make sure it is clean.
Protect the teeth
• Children with HIV get holes in their teeth more easily than other
children.
• Brush your child’s teeth after meals.
• Wipe the teeth of babies with a clean, soft, wet cloth.
• FLUORIDE tablets given daily will make the teeth stronger.
They can be bought at a chemist.
• Make sure that your child has his or her own toothbrush and that
this is set aside for his or her use only.
• Babies should not be put to sleep with a bottle of milk or juice as
this feeds germs in the mouth.
Clean drinking water
Make sure that your drinking water is safe – if it does not come from a
tap, you should bring it to the boil, for a few seconds, to kill the germs.
Another way to purify water is to use bleach such as Jik. Follow the
directions on the JIK bottle, using the right amount and then waiting
before drinking it.
If it is difficult or too expensive for you to boil water or use Jik, then it is
better to put water in a clear and clean plastic or glass bottle, and put
this in the sun all day (12 hours) to help kill germs. Keep a lid on the
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Clean the mouth
• Washing hands often is one of the best ways to keep germs
from spreading.
• You and your child should always wash your hands before
eating and after using the toilet.
• You should wash your hands before preparing food and before
feeding your child.
Animal faeces from any animal – dogs, cats, cows, sheep, goats and
chickens and other birds – are also dangerous and carry germs. Wash
hands after touching animals.
Germs can make people sick if they get into drinking water, onto
food, onto the hands, or onto cooking spoons or onto tables and
surfaces used for preparing food.
Keep the home clean and free from dirt
Dirt and rubbish – dispose of it in a
safe way: Burn or bury
rubbish if there is no refuse removal.
Buried rubbish must be deep enough
to prevent dogs or rats getting to it.
Get rid of pests such as mice, rats and
cockroaches that bring dirt into the
house.
Flies, cockroaches, rats and mice spread
diseases therefore keep food covered.
Fight germs – watch out for damp cloths or towels!
Germs love damp or dirty cloths!
Set aside one cloth or towel for each child ALONE to use. This will
protect that child from getting infected by others.
All cloths or towels used to dry the face and hands should be washed
EVERY DAY and hung in the sun to dry.
Clean air: dust and smoke (cigarette smoke or smoke from fires) are dirty
and can bring on asthma, or make chest infections worse. If you need an
indoor fire to keep warm, try to make it have as little smoke as possible,
and make sure there is some fresh air coming in.
Stools: we are usually careful to see that adult stools (faeces) go in a
latrine or are safely buried. We know that they are dangerous to health.
But caregivers may be careless about a baby’s stools.
We need to know that they are also full of germs and are very dangerous.
Faeces must be disposed of in a way that will not allow the germs to
spread.
Any nappies or soiled clothes must be soaked in a Jik and water mixture,
or in soapy water, and washed well (in very hot or boiling water if
possible). Keep a separate bucket for nappies and soiled clothes.
If boiling soiled cloths or nappies, use a separate pot that is never used
for cooking or preparing food.
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Wash your hands with soap for at least a minute after handling
dirty items.
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In the kitchen
Wash your hands before preparing foods.
Rinse vegetables and fruit with clean water before eating them.
Cover any cooked food that you are keeping for later – store this in a
cool place.
If you reheat cooked food, make sure it is heated up to boiling point to
kill any germs.
Let your dishes drip dry, rather than wiping them dry.
Add a tablespoon of Jik to your dishwater when washing dishes and
when wiping your kitchen surfaces.
Boil dishcloths or wash very well and hang in the sun.
Clean up blood spills
All blood can carry germs and different viruses.
HIV only stays alive in fresh blood. Therefore it is very unlikely that
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bottle to keep out dust and flies. Make sure the bottle is not in the
shade. This method does not work on a cloudy day, so it is good to
use several bottles and store some of the water.
Precautions
You want to be sure that no one will catch any disease from spilt blood.
And so the following things should be done:
Wash away blood that has been spilt on the floor, using Jik that has
been mixed with water (one teaspoon to a cupful).
If you have no Jik, wipe up the blood with soapy water and an old rag
that you can then burn, or bury deep.
If blood is spilt on the ground, you can pour soapy water or water with
Jik on the place, and cover it with dry sand.
To protect your hands, especially if they are cut, or bruised or have a
rash, you should wear rubber gloves, or wrap your hands up in plastic
shopping bags. Both gloves and shopping bags should be thrown
away. Like all rubbish they should be buried deep if you do not have
refuse disposal trucks coming for the rubbish.
Whenever hands have touched bodily fluids (blood, urine, spit etc) they
should be washed thoroughly with soap and warm water for at least 10
seconds.
Any cloth that has blood spilt on it should be rinsed at once, and either
washed in very hot water and soap, or soaked in Jik and water, for
some hours or overnight. Rags used for mopping up spilt blood should
be burnt or buried deep.
3
PROTECTING MY CHILD WITH GOOD FOOD
FEEDING BABIES
Babies up to the age of 4 to 6 months should only be fed on
milk. They should not be given anything else – not juice or
porridge or even water.
Babies’ milk is often breast-milk which can be fed straight from
the breast, or it can be expressed (that is, squeezed out of the
breast) and put into a bottle or cup.
Milk that comes as a powder to be mixed with water is called
“formula” milk. It can be fed from a bottle or cup.
Mothers should find out all the facts about feeding babies,
so that they can choose for themselves if they will breast-feed or
formula-feed their babies.
Why a mother might choose to breast-feed:
• Breast-fed babies are often healthier and get fewer chest and
stomach infections.
• The babies have close contact with their mother and they need
this loving care.
• The milk is always ready, and at the right temperature (warmth).
• Babies can never be overfed on breast-milk.
• Milk formula is expensive. (But find out if it will be provided free
at the clinic.)
• The mother may feel pressure to breast-feed from her family.
• She may be worried that others may treat her badly, as they
may say that she does not breast-feed because she is living
with HIV.
If cloths are re-used by menstruating girls and women, who have HIV,
they need to be washed in boiling water and soap, or soaked in Jik and
water, for some hours or overnight. If they are to be thrown away, they
should be burnt or buried deep.
Why a mother might choose NOT to breast-feed:
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anyone will catch HIV from the blood of a child living with HIV, unless
they themselves have a cut or sore that infected blood gets into.
It is important to make sure that your child living with HIV will not catch
other infections from someone else’s blood.
If the mother has HIV, there is a risk that it can be passed on to
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Exclusive – only using one thing and nothing else.
Treating breast-milk to sterilise it and make it safe
Breast-milk can be treated with heat to kill the HIV germs.
• Express the breast-milk and collect about 150mls – about half
a cup. Remember that breast-milk is much stronger than
cow’s-milk and so the baby needs less of it.
• Put the breast-milk in a clean glass bottle that can be closed,
such as an empty, washed peanut-butter jar.
• Boil about 750mls of water in a pot, then take it off the stove
and stand the bottle with breast-milk in the pot of water for at
least 20 minutes.
• Feed it to the baby, making sure it is not too hot.
If babies ONLY have breast-milk for the first 4 months of their
lives there seems to be a smaller chance of them getting HIV
from their mother’s milk, even if she has HIV. After that age
they can learn to drink milk-formula – or heat-treated
breast-milk – from a cup.
water, and throw away the water after using it once.
• Wash your hands well with soap before mixing a baby’s feed.
• Wash anything you use such as a cup or spoon or knife with
hot water and soap.
• You must not keep left-over milk to feed to the baby later. It
should be fed to the baby within an hour. But you can add
left-over milk to the porridge you cook for the family.
Careful Mixing
The feed must be mixed carefully. Milk that is too strong can
cause stomach upsets, and milk that is too weak will not make
the baby strong.
The usual way to mix a feed is to boil water, cool it and pour it
into the baby’s bottle. Put the formula into the scoop and level it
by using a knife to flatten it. Always use one scoop for every
25mls of water – for example for 100ml of water, you would add
4 scoops.
Sterilise – to make sure that germs are killed – usually by boiling.
What can I do about cracked
and sore nipples?
Do not breast-feed a baby if
your nipples are sore and
cracked as there is an
increased chance of passing on
HIV to the baby if you do. You
can express milk into a cup and
sterilise it as described above
until the nipples are healed, or
you can wean the baby onto a
bottle or cup.
SAFE BOTTLE FEEDING
Cleanliness
• All water used to mix a baby’s feed must first be boiled and
then cooled.
• The bottle, lid and teat must be sterilised. They can be
sterilised by being boiled for at least 5 minutes. Or wash them
and then put them for half an hour in water that has bleach
such as “Jik” added. Use one teaspoon bleach to 2 cups of
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the baby from the breast-milk, especially if breast-feeding is not
exclusive.
A mother who is ill or weak may not be able to breast-feed.
Preventing thrush and breast infections
Wash all bras, bra pads, nightgowns, vests and anything that comes in
contact with your nipples in HOT water with bleach added to it, and dry
in the sun.
Rinse your nipples with a vinegar and water solution (1 tablespoon
vinegar to 1 cup water) after every feeding. Use fresh cotton wool each
time you wipe a nipple and mix a new solution every day.
Be careful with hand washing, especially after nappy changes. Babies
can get yeasty nappy rashes very easily.
Nappies can pass on thrush to other clothes if they are washed together.
Wash nappies separately in very hot water – and sterilise them with a
disinfectant, or boil them, if possible. Use a different pot for boiling dirty
laundry. Once it has been used for dirty nappies or clothes, never use it
again for preparing food.
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When to feed babies
Newborns need feeding every 2-3 hours but gradually increase the
time between feeds until they feed every 4-6 hours.
Babies should be fed when they are hungry. They will usually cry
when they are hungry and turn their heads from side to side looking for
a nipple or teat.
How to get babies to feed
Babies with HIV may be “sleepy” and they may not cry to be fed in the
same way as other babies.
It is important that they get enough food at regular times.
Mothers and other caregivers need to be patient with these babies,
and coax them to feed. Stroking a baby’s cheek, rocking the baby in
your arms, talking and singing to the baby all help him or her to “wake
up” and want food.
FEEDING PROBLEMS – SICK BABIES
Blocked nose: babies cannot suck if their noses are blocked because
of a cold. Ask the clinic for drops to put in the nose before trying to
feed the baby.
Or you can make your own nose-drops by mixing half a cup of boiled
water, when it is cooled, with a quarter teaspoon salt and one quarter
teaspoon bicarbonate of soda.
Coughing: a baby with a cough that blocks the throat with mucus, also
cannot suck easily. Turn the baby over your knee, and pat gently on
the back to help the baby to cough. Do not stop babies coughing altogether as coughing is good – it gets rid of the germs in the chest.
Remember too, that even weak “baby syrup” can upset the baby’s
stomach.
Mouth sores: a child with mouth thrush or mouth sores cannot eat
properly, because they are painful, and give a bad taste or burning
when eating. Take the child for treatment as soon as possible.
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The most common causes of pain and cracked nipples come from
holding the baby the wrong way so that he grabs the nipple between
his gums instead of behind it.
Thrush in the nipples: on-going nipple pain in the early weeks of
breast-feeding, or nipple pain that appears after several weeks or
months of pain-free nursing, may be caused by thrush – which is a
yeast infection of the nipples. This can cause itchy or burning nipples
that appear pink or red, shiny and flaky (skin peeling), and/or have a
rash with tiny blisters. Your nipples may be cracked and you may have
intense pain in the nipples or breast.
Thrush may be difficult to cure and it is important to get medicines
from the clinic or doctor. After treatment for thrush begins, the
symptoms may appear to get worse for a couple of days before
improving. While the pain continues, offer your baby short, frequent
feedings, beginning with the least painful side. Be sure to rinse your
nipples and let them dry in the air after each feeding.
Dummy: if your baby uses a dummy, it should be boiled for 20 minutes
once a day and replaced with a new dummy, often. Toys that go in your
baby’s mouth should be washed with hot, soapy water.
Very ill babies may be put on an intravenous drip and given liquid
“intravenously” – straight into their bodies through a needle attached to
a tube leading from a bag of fluid, into a vein.
Thrush – patches of white in parts of the body where there is mucus
– these patches show a yeast infection.
WEANING A BABY WHO HAS HIV
Babies with HIV need to be weaned onto food that will build and
protect their bodies.
Boiled, peeled and mashed vegetables should be added to the thin
porridge at least once a day.
Add a half teaspoon of oil or margarine to the food on the child’s plate.
Ask for Vitamin A syrup from the clinic. Leafy green vegetables and
orange-coloured fruit and vegetables will also give your baby Vitamin A.
Diarrhoea – loose, unformed, watery stools several times a day.
Dehydrate or dehydration – becoming dried up, usually through
diarrhoea and vomiting. Dehydration can be prevented by giving
the baby plenty to drink.
Rehydration – curing dehydration with extra water or other fluids.
Intravenous drip – in hospital a hollow needle may be put into a
vein and a water mixture (or medicine, sometimes) drips from a bag
down a tube into the person’s body, through the hollow needle.
A BREAST-FED baby must never be mixed fed; so the weaning from
mother’s milk must be abrupt: one day the baby is breast-fed still, the
following day, he or she must start formula milk in a cup and the above
mentioned food
Feed the baby and small child often
Children under three years of age need to be fed 5 or 6 times a day, as
their stomachs are very small, and they need a lot of energy to grow.
After an illness, a child needs an extra meal every day for at least
a week.
Diarrhoea – in babies can be a great problem as a baby is made of
90% water so he or she can quickly dehydrate – dry up – and this can
be very dangerous. These are the danger signs:
• the eyes get dry and sunken
• the lips get dry and cracked
• the baby does not urinate (wee)
• the soft spot on top of a baby’s head looks sunken
• the baby hardly moves or cries
• if you gently pinch the baby’s skin, it does not smooth over at
once when you let go – the mark stays for a while.
Take him or her for treatment as soon as possible, and give the baby
something to drink while you are waiting.
Give extra feeds while the baby has diarrhoea, and for a week
afterwards.
The clinic may give you “Rehydration Salts” to mix with cooled boiled
water for a baby with diarrhoea.
1. Some foods help you to GROW
• Foods that build healthy bodies are milk, fish, eggs, dried
beans, meat, peanut butter.
2. Some foods help you to GO
• Foods that help you to be active and give you energy are
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MAKING GOOD FOOD BETTER FOR CHILDREN
It is important for all children to eat enough good food.
Good food means eating food of various kinds.
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Mucus – the “wetness” that is natural to the mouth, nose, throat (and
inside the genitals). It can become thick and change colour to white
or yellow or green when there is an infection.
What food does my child need every day?
• Your child should eat at least one vegetable (not
counting potato) and one fruit every day.
• Well-cooked dry beans, such as sugar beans and
brown beans, should be eaten as often as
possible as they have the same food value as
meat but do not cost as much.
• Your child should have at least one helping of
beans or meat, or fish or chicken or an egg or
peanut butter every day. Cheese is good for older
children.
• Children over a year old should have 2–3 glasses
of full-cream fresh milk or full-cream powdered
milk every day.
• Children should drink at least 3 glasses of clean
water every day.
• Your child should have extra vitamins daily. Ask
at the clinic for these.
For porridge you can add a little:
Eggs
Sugar
Margarine or fish oil
Peanut butter
Sour milk (Amasi) or milk
Add margarine or fish oil to ANY food you cook! You should put a
teaspoon of margarine or fish oil straight into food on your child’s plate,
so as to make sure she or he gets enough.
Add mayonnaise to salad.
Add extra tomato and cheese to pasta (macaroni and noodles) and to
pizza.
Very important foods to keep the child healthy:
• Berries, oranges and dark leafy vegetables (contain Vitamin C)
• Nuts, vegetable oils, rice and bran (contain Vitamin E)
• Nuts, grains and vegetables (contain Selenium)
Not very healthy food
Food from tins and packets is often not so healthy – it is better to cook
your own food. Tinned juice may be rich in Vitamin C – look at the
label – but may have other ingredients added that are not healthy.
Sweets and crisps should not be eaten instead of food, as they often
take away the child’s appetite for good food such as porridge,
vegetables or beans.
Take-away food, like fried chips and burgers or fried chicken, is not
very healthy.
How can I make good food even better?
Children should be allowed to eat as much pap
(thick porridge), rice, bread, stamp, or mielies
(maize) as they like provided they have some of
the following added to them:
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For soup or stew add:
• Fish oil or margarine
• Dry beans, meat, bones, milk or milk powder,
• Vegetables
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porridge, bread, small amounts of sugar, fats and oils.
3. Some foods help you to GLOW
• Foods that make you shine with health are vegetables and
fruits and vitamins. Children with HIV need extra vitamins with
mineral supplements, especially Vitamin A (ask at the clinic for
this).
When to feed a child
Your child needs small regular meals, 5 or 6 times a day.
After an illness, a child needs an extra meal every day for at least a
week.
4
PARTNERS IN MEDICAL CARE
Keeping Your Child Well
Visits to the clinic
PEM supplement
If your child is not putting on weight and the clinic can see this on the
Road-to-Health clinic card, you should ask for the PEM extra free food
“supplement”. A food supplement is something added to other food to
make it better for health. It is given free at clinics to very young
children under a government programme called PEM (Protein-Energy
Malnutrition Scheme).
Community support groups
Ask at the clinic and in the community if there are any groups that give
milk-powder or other food to children, and ask for help. Home-based
caregivers may be able to help.
Food Parcel Programme for TB patients
If your child has TB, you can ask at the TB clinic about food parcels.
This programme is run by local authorities, as part of a plan to control
TB. Food parcels are given out during the first two months of
treatment.
Food gardens
Plant vegetables in the garden or in pots so that you have fresh
vegetables to cook.
Try to get enriched meal (such as “e-pap”) or food supplements (such
as “Complan” or “Ensure”) to help your child gain weight.
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Your child will need to have the
same care as any child, plus a
few extras. The clinic and health
care workers are important
partners in the medical care of
your child. It is important to go
to the clinic for regular
check-ups – your health worker will tell you how often. It will depend
upon the age and needs of your child. This is likely to change over
time.
PART 2 - Keeping Healthy
Problems with getting food
It is often difficult to stop a child living with HIV from losing weight, but
it is very important for their health to keep trying!
When you go to the clinic your child should receive the usual
immunisations. This includes BCG and live vaccinations.
All children should have their growth and general development checked
regularly. Weight growth is written on the Road-to-Health chart. The
clinic should also check if your child is learning to talk and use their
body in the right way for their age.
Your child must be given the medicine co-trimoxazole to take regularly,
as this helps keep infections away.
Vitamin A injections should also be given to children with HIV every 6
months up to the age of 5 years. If your child has lost a lot of weight
from lack of food, diarrhoea or measles, then he or she can be given
two doses, 24 hours apart.
Children over 12 months old should be given de-worming medicine
every 6 months.
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Making the most of visits to the health worker
BUILD A GOOD RELATIONSHIP WITH YOUR CLINIC AND
HOSPITAL
You need to take your child to the clinic for a check-up regularly. The
staff are usually very busy and overworked, so be patient and pleasant
towards them – but insist on your rights and the rights of your child.
Try by all means to build a good relationship with the staff to encourage
them to give your child their best attention.
You have the right to ask the health worker or doctor what they have
found out when they check your child during a visit or from tests, as
well as the names and use of the medicines that are being given to
your child.
Ask the doctor or nurse to write down the names for you, and to write
down exactly how much and when the medicines should be given to
the child.
Ask what good the medicines are meant to do, and if there are any
side-effects.
Ask if you can see the hospital or clinic records, if you wish to do so at
any time – some hospitals allow this and others do not. However it is
your right to see medical records about your child or yourself. You may
need help with this and you can contact AIDS Law Project, their details
are in the back of this booklet.
Tell the doctor when you first see him or her if there are any medicines
or vitamins or home-remedies your child is taking.
Has a traditional healer prescribed any treatment?
Some medicines and treatments do not work well together, and some
stop the best treatment from working well. So be open with your child’s
doctor, and follow his advice.
If you find the medicines from the clinic are NOT helping your child, or
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• Make notes of problems or questions between visits. Take this
with you and use it when you are meeting with the nurse,
doctor or counsellor.
• Keep a list of the days that your child was not feeling well, and
write down what happened.
• When your child is examined, ask what the health worker has
found out.
• Ask about what tests are being done, as well as the results and
meaning of tests.
• If you need advice or information to help you deal with a
problem facing you or your child, ask for help.
• Try to learn more about HIV and AIDS and how to care for
children at every visit.
• Have ideas for how to keep your child and yourself occupied
while you wait – learning and playing.
HELP YOUR CHILD TO BE A PARTNER IN THEIR OWN
HEALTH CARE
Helpful ideas about health workers
• Children need to believe that care and treatment are given in
love, to help with illness or hurt.
• They need to trust health workers to do what is best for them –
and hurt them as little as possible.
Talk to children about the special care and treatment they need and
encourage them to look on the health workers as their helpers and
friends.
When children hold these helpful ideas they cooperate far better in
taking medicine, in keeping clean and generally in being partners in
their own health care. They do not get discouraged so easily and are
healthier as a result of their good attitude.
Harmful fears about health workers
How do we encourage helpful ideas about health workers?
Sometimes a caregiver may use a threat to a child, “If you are naughty,
the nurse will give you an injection!”
From an early age we can tell children stories and sing them songs
about nurses and doctors helping us to get better – this is their work.
We can encourage young children to play-act being a nurse or doctor
and helping sick or hurt people get well. Some boys and girls may like
to pretend to be an ambulance driver that can race taking patients to
hospital, sounding a siren!
Children should know through stories and discussion, that health
workers also help prevent people getting sick. They offer immunisation
at clinics, “Road to Health” checks on weight and food supplements
from clinics when necessary. Health workers also often offer dental
and eye checks at clinics and schools, and also of course they help
pregnant mothers at antenatal clinics and hospitals.
Why is it wrong for children to believe this?
• Firstly it teaches children that medical care and treatment are
a punishment for something they have done wrong. This is
NOT true!
• Secondly, it teaches children that nurses or doctors are not to
be trusted as their work is to hurt children. This will make
children frightened of going to the clinic or to a doctor.
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Talk about hospitals and explain about people having to sleep there
sometimes so that nurses and doctors can give them special care.
Children can be encouraged to draw their own pictures about health
workers and the care they offer, and to talk about them and make up
their own stories. Their play-acting and pictures help them to
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that there are side effects like vomiting, it is best to bring the child back
to the SAME CLINIC and ask for different treatment. There are often
different medicines to choose from, and the doctor must see which one
suits your child best.
WHEN CHILDREN GO TO THE CLINIC OR HOSPITAL
Prepare children for a visit, before they go. Explain why they are
going and what is likely to happen there. Always tell them the truth, so
that they can trust you, but tell them in a simple way that they can
understand. Tell them you love them and will be with them. If there is
likely to be a long wait in the queue, take food and drink and if possible
something for the child to play with.
During the visit, help to make it as pleasant as you can. Encourage
the nurse or health worker to greet the child and to include him or her
in what is said. If the health worker only talks to you, you can smile
and repeat the information or instruction directly to the child and ask
the child to respond. You can praise the child to the health worker –
this will help the child to feel good and to relax.
After the visit, go over the visit and talk about it with the child. Ask
the child questions like these: What were the scary things at the clinic?
What made you feel better? What might we do next time to make the
visit more pleasant?
WAITING IN THE QUEUE
You and your child might have to wait in the queue for some hours, so
it is important to remember to take food and – especially – drink with
you. It is dangerous, remember, for children to get dried out.
You can plan ways to help your child to stay happy while waiting.
Perhaps you could have a story ready to tell him or her.
Or you can play a game such as “I can see something!”. The reply
from the child is “What do you see?” And then you say that it is RED –
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for example – and the child has to guess what it is that is red that you
can see. When the child guesses right, it is his or her turn to choose a
colour and to say “I can see something!”. There are other ways of
playing this game, for example “I see something starting with the letter
– A”. You can go through the alphabet this way.
Another game that children enjoy is “I am just as big as my little finger,
and I am hiding away”. The child has to look for a small hiding place in
the room, where the little person could be hiding away. When the
hiding place is found, then the child has a turn to say “I am just as big
as my little finger and I am hiding away!” and the other person must
guess where.
WHEN YOUR CHILD HAS TO STAY IN HOSPITAL
Children who have had some preparation for a stay in hospital are
much happier than those who are taken to hospital suddenly and do
not know why, or what to expect.
Explain to children why they may need to go to hospital for special
care. Tell them about the nurses and doctors who will examine them
and care for them. Explain about a “ward” and that many children will
share the same room, so that one or two nurses can watch over them
all.
Explain about the hospital clothes that they will have to wear – a funny
long shirt that ties at the back.
Tell them about visiting hours and make it clear when you will visit
them. Make sure to keep your promises!
Assure them that when they are better, you will fetch them home again.
In particular, children may be very worried about being left alone in a
strange place without you there. It is usually a great help if the child
can hang onto something of yours in your absence. We suggest that
you give the child a face cloth for him or her to keep, and to hold onto if
they feel sad.
Sometimes children cry and scream whenever you leave them. It may
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PART 2 - Keeping Healthy
understand and believe what you have told them. You can find useful
books in the library about health care.
be better to say goodbye calmly, and to leave, as the actual parting is
the hard time – and the longer you take saying goodbye, the harder it
is for both of you.
Sometimes children start crying the moment you arrive to visit them!
This is natural and is not naughty! When you are there, they cry so
that you can comfort them!
When you bring the child home, talk about the stay in hospital and let
the child tell you what happened and how he or she felt!
PART 3
HIV STAGES AND TREATMENT
This part of the book tells you about the following:
1. Understanding HIV and the path (stages) it follows
WHAT TO TAKE TO THE HOSPITAL WITH YOUR CHILD
2. Caring for your child’s health from Stage 2 onwards
When to take your child to the clinic or hospital
Possible health problems in early stages of HIV
Special care in feeding a sick child
Special comfort for a sick child
Helping your child in pain
PART 3 - HIV stages & treatment
You need to take FOUR THINGS with you when you take a child to
hospital:
1. Bring some food and drink for your child as there may be a
long wait before he or she is seen by a doctor, or even
admitted.
2. Bring your child’s toothbrush and a flannel (face-cloth) and
soap
3. Be ready to show the clinic card, ID, letters from the clinic and
any letters or notes about the medicines your child is taking.
4. Bring any medicines that your child has been given to take
daily such as co-trimoxazole (Bactrim ®), medicines for TB,
perhaps, or ARVs if your child has been prescribed them.
You are responsible for seeing that your child takes these
medicines daily, and you need to talk to the hospital staff
about the best way to see that this is done.
3. Opportunistic infections
Skin infections
Head and throat
Chest
Lower body
4. Anti-retroviral Treatment
What about ART for my child?
Learning about ARV drugs
How can I help my child stick to taking the drugs?
Some possible problems and what to do
5. If my child is very ill – what can I do at the end?
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UNDERSTANDING HIV AND THE PATH
(STAGES) IT FOLLOWS
In the following pages we look at how HIV develops and the path it
follows. We also look at the different care and treatments your child
may need along the way.
Each child is different, so no one can know what problems your child
may have. But at different points on the path, different sicknesses are
more common for many children with HIV. There will be different
opportunistic infections depending on how much HIV your child has in
his or her blood, and how weak he or she has become.
STAGES OF HIV and AIDS
The doctors and nurses may talk about different “stages” but in fact
HIV follows a sloping path downwards, changing slowly, and does not
suddenly move down in steps or stages. But thinking of the path or
progression of HIV in stages helps health care workers to manage a
person’s treatment. Doctors and health workers will be able to tell
how far along the HIV path your child has travelled, by checking for
“opportunistic infections”, and seeing
HOW SICK your child gets (how strong or severe the infection is),
HOW LONG the sickness lasts and
HOW OFTEN your child gets sick.
These stages also help health care workers to know what care and
treatment to provide for your child to keep him or her as well as
possible for as long as possible.
Opportunistic infections:
An adult person or child living with the HIV virus gets weaker and so
gets more “opportunistic” infections (OIs). These are sicknesses that
use the opportunity, or take the chance, given them, by the
weakness of the HIV positive person, to infect the person.
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South Africa and the World Health Organisation are now using FOUR
stages to think about HIV and AIDS in adults and in children.
STAGE ONE
STAGE TWO
STAGE THREE
STAGE FOUR
–
–
–
–
person has HIV and is well
person gets a bit sick
person gets more sick, more often
without treatment that person can get
very sick and not get well easily
Certain health problems are more likely to happen at different stages.
Some health problems are considered AIDS defining. Once a person
has an AIDS defining illness, they will be treated for AIDS even though
they may get better and be well. An example of an AIDS-defining
illness is the special chest infection called PCP, which is a type of
pneumonia.
Different people with HIV move along this path at different speeds.
Some people will stay well with HIV for a long time, others may move
to becoming sick more quickly. Children become sick more seriously
and more quickly than adults. The section below gives more
information on what happens in each stage.
Stage One – the child seems quite well, but might have long-lasting
swellings in the neck or under the arms, or other small signs of illness.
When children are first infected with HIV they may seem quite well.
Even though they have HIV, they may have no signs or symptoms as a
result of the infection. They seem healthy although the HIV is building
up in their bodies.
Stage Two – health problems are starting to come up that need
medical care and medicines. The immune system is not working well.
The child will have more health problems, more often and take longer
to get over them. These are called opportunistic infections (OIs) and
they include mouth, stomach, ear and skin infections.
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With treatment he or she recovers quite quickly at first. Babies with HIV,
however, usually show signs of being infected very early, almost from
birth, and often become very ill soon after. When they do become ill, they
become seriously ill more often.
you, your child and the health worker how strong your child’s protection
is against infections.
Most health workers use percentages for children up to 6 years old, but
some continue to use these until children are 12 years old.
What is happening is that the child’s protection (CD4 count) is starting to
get lower and the amount of HIV in the blood (viral load) is increasing.
Stage Three – the child becomes thinner, losing weight because of not
taking in the goodness of the food, although he or she is eating healthy
meals. Loss of weight may also come from the long-lasting diarrhoea
(runny stools) that happens at this stage. There may also be long-lasting
fevers (high temperatures), and TB of the lungs or other chest problems.
The child may have to stay in hospital from time to time.
PART 3 - HIV stages & treatment
Stage Four – without treatment, the child often becomes extremely thin
and may be very sick. In this stage, people may get illnesses called
AIDS-related illnesses – such as some cancers like “Karposis”, thrush
infections in the breathing tubes and lungs or tube leading to the stomach, the pneumonia or lung infection called PCP, severe shingles, infections of the brain and others.
Also remember that people can stay at the last stage for a long time,
living active lives. Many people who were severely ill have started taking
anti-retrovirals (ARVs) and in their own words “have come back alive”.
In South Africa, the Health Department has said children should have
anti-retroviral treatment (ART) if the child:
• has moderate or severe opportunistic infections OR
• has been admitted to hospital for AIDS related illnesses for
long periods (usually more than 2 weeks at a time) OR
• has been admitted to hospital more than twice in the past
year OR
• has a very low CD4 percentage or count.
CD4 test measures how strong your child’s immune system is. It tells
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CARING FOR YOUR CHILD’S HEALTH
FROM STAGE 2 ONWARDS
Get treatment early
It is very important that children living with HIV get treated as soon as
infections start. Early treatment will prevent more serious illness from
developing.
We describe some of the health problems that children may have at this
time so that you can recognise them, know when to get the child
checked, and so that you can get proper treatment for your child.
We offer advice for the prevention and care of these health problems,
and also describe the medicines that may be given the child at the clinic.
We hope you will find this information on “treatment literacy” useful, but
please follow the nurse’s and doctor’s orders!
When to take your child to the clinic or hospital?
There are some things that you can do at home, or teachers can do at
school for children, but there are times when health workers need to
help you care for your child. Here is a list and in the next pages more
information on each of these problems.
Emergency care NOW
Drop everything else and get help at once if the child has
diarrhoea and dehydration (drying up)
breathing problems
high fever
seems very ill, sleepy or is not waking up
if the soft spot on baby’s head is bulging or sunken
if the child is vomiting everything or not taking any feeds at all
Urgent care SOON
Get help today or tomorrow, as soon as you can if the child
has a dry, itchy skin and a rash or a painful ear or discharge
from the ear.
Not urgent, but very important
When the condition is not improvingis or is gradually getting
worse, you can wait another week before getting help for your
child? You may be worried about your child’s slow development,
swellinggs, on-going low fever, and loss of weight.
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EMERGENCY CARE, ACT NOW – take your child
immediately to the clinic or hospital if your child has:
Diarrhoea
Loose, watery or slimy stools more than 3 times a day
Loose stools for more than 2 weeks.
Blood in the stools
Diarrhoea with high fever or if also very ill
Seems sleepy all the time (lethargic) or is unconscious,
The eyes are sunken
He or she is unable or refuses to drink
The skin, when pinched, stays pinched-looking for more than 2
seconds
Breathing problems
Panting (breathing very fast), or the stomach may go in and out
(instead of the chest)
The nostrils may move outwards (flare) at every breath
The child may need to sit up to breathe
Breathing may also be noisy and harsh
High fever
If your child has a fever this is an important warning sign. Your
child’s skin will feel hot when you place your cheek against his or
her face or chest, and will seem weak and not move much. If
the child is very hot he or she may have a fit – or may seem not
to understand what is happening around him or her.
Cover the child with a loose light cover and dress him or her in
light clothes because warm clothes or blankets make the body
hotter. Give water or other drinks often.
Give the child paracetamol (Panado) to bring the temperature
down but if the fever stays high, take the child to the clinic.
Seems very ill, sleepy or not waking up.
Soft spot on baby’s head is bulging or sunken
Vomiting everything or not taking any feeds at all
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2
Dry, itchy skin and a rash.
If these problems are not sorted out early on they can become bigger
problems. Sometimes you can care for them yourself. Sometimes your
child will need help from the clinic or hospital. See the section on skin
problems for more information.
Painful ear or discharge from the ear.
The child will most probably
show signs of pain, perhaps
crying and rubbing the ear. He
or she will also be hot and run
a temperature. If the eardrum
bursts, you may see thick
yellow pus coming out of the
ears. If there is pus, wipe the
outside of the ear gently. Do
not poke or “dig” into the ear as
you can damage it. The doctor
may give your child an
antibiotic medicine to cure this
infection and prevent others.
The medicine will most
probably be Amoxycillin.
If your child is in pain or discomfort, ask also for a painkiller for your
child. It is likely that you will be given paracetamol. Do NOT give
aspirin to a child.
weight, or may be not growing like other children of the same age.
Is there any change, lasting for more than a few days, in the way the
child is playing, eating, sleeping or passing urine or having bowel
movements?
Notice particularly if the child stops developing or goes back.
Here are a few things to watch out for:
• Baby over 2 months: Does your baby smile and try to talk?
Does your baby notice bright lights or a loud sound? Does
your baby try to sit up?
• One year old: Does your child crawl and try to stand alone?
Can your child pick things up with a thumb and one finger?
Is your child saying two or three words and understanding
more?
• At 2 years can your child talk in short sentences (2 or 3
words)? Feed himself or herself? Carry something while
walking? Point to hair, ears and nose when asked to do this?
• At 4 years can your child play simple games with others?
Ask questions? Answer simple questions? Wash hands
alone?
• At 5 years does your child speak clearly? Can your child
dress without help? Can your child throw a ball and kick it?
• Older children: Does your child have problems learning at
school?
If you think your child is not developing well you need to take the child
to the clinic and talk to a doctor or nurse. Slow development can be a
sign of HIV infection in the brain. It is possible to help children with
these developmental delays. The help works best if the problem is
found and treated early.
NOT URGENT – but very important
Slow development.
Watch your child carefully every day to make sure he or she is healthy.
Over time you may notice that your child does not seem to be gaining
You, yourself, and your family also need to encourage your child to
smile and talk and play and to use his or her hands and eyes and ears!
Everything a child enjoys seeing and hearing and touching and doing
helps the brain to develop.
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PART 3 - HIV stages & treatment
URGENT CARE – act soon – today or tomorrow
You may notice swellings, usually in the neck, but also perhaps
under the arms or in the groin – where the leg joins the body.
These are not a bad sign as they show that the child’s immune
system is fighting the HIV. But if these swellings become very
hard, red and sore you should take your child to the clinic, as it
means that there may be problem that needs treatment.
A big, swollen stomach may be seen because the liver and
spleen are working extra hard to keep your child well – they are
busy helping to make new CD4 cells.
The swellings in the neck, under the arms and in the groin happen in
the lymph glands that are part of the immune system of the body.
These glands help to fight infection.
Lymph glands – these are rather like little bags that act as sieves, to
help fight infection in the body. They are found throughout the body, but
can often be felt as swellings in the neck, under the arms or in the groin
when the body is infected. They might become swollen and red.
Immune system – all the parts of the body that fight infection together,
especially the “guard” cells in the blood (CD4 cells) and the lymph
glands.
Fever or high temperature
If your child has a fever this is a warning sign. The child will feel
hot when you place your cheek against his or her face or chest,
and will seem weak and not interested in doing anything. If the
child is very hot he or she may have a fit – or may seem not to
understand what is happening around him or her.
Cover the child with a loose light cover and dress him or her in light
clothes because warm clothes or blankets make the body hotter.
Give water or other drinks often.
Give the child paracetamol (Panado ®) to bring the temperature down
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but if the fever comes back the next day, take the child to the clinic.
At a later stage the fever may keep coming back for a month or
longer, and last for days.
Loss of weight
A child living with HIV often becomes very thin, even though he or
she is eating healthy food. The body is just not taking in or
“absorbing” the goodness from the food that is eaten.
The child may be given a food supplement at the clinic. If the child
is on anti-retroviral treatment (ARVs) he or she should also be
given the food called Philani or Philani with Zymune.
Worms
Worms in the stomach and gut are serious as they prevent children
from absorbing (taking up) food that has been eaten. When children
are living with HIV, they are already having problems in absorbing
food because of the HIV, and the worms make this worse.
Prevention: Worms are spread from the stools (faeces) of both
animals and humans. Very strict rules on washing hands and
keeping clean are important. All children of the family should be
treated regularly for worms.
Treatment: Children 1 year and older need de-worming every 6
months.
For children younger than 2 years old the medicine is mebendazole
For children older than 2 years old the medicine is albendazole.
Weak blood (anaemia)
Your child may be found to have weak blood (anaemia) after a
blood test. If so the clinic will give medicines to help and will also
advise you on a good diet.
Other possible health problems are described in the section on
OPPORTUNISTIC INFECTIONS (page 90).
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Swellings
Medicines may have several names. There is the general scientific name or “generic”
name. Then there are the names given the medicine by the drug companies – these
are the brand names. The brand name is usually better known as this is the name on
the box or bottle we buy.
In this booklet we give the generic name first and then the brand name in brackets
after it.
The brand name is registered with the Patent Office and may not be copied and sold
cheaply. Any brand name article is usually very expensive – think of expensive
brands of shoes or sunglasses!
For example: paracetamol is the generic name for Panado or other similar brands.
The brand name for a medicine called co-trimoxazole is Bactrim.
A generic drug is much cheaper – like a “no-name” brand of soap or sugar or
mealie-meal in a supermarket.
Anything for sale that has a registered brand name may have a © or ® next to its
name – or may say “TM” for ‘trade mark” .
Special care in feeding a sick child
Persuade children to eat
Children, who are not well, often do not feel hungry, but your child
needs to be persuaded to eat. Losing weight and getting too thin is
one of the biggest problems in a child living with HIV.
Make the food look and taste good.
Give small helpings but offer food more often – 6 or more times a
day.
Have a pleasant setting for the meal. A clean and neat table or
tray and a comfortable seat for the child will help make the meal
enjoyable.
Make mealtimes a pleasant and friendly time for the child. If possible,
and if it is part of your culture, eat the main meal as a family.
Other children eating with your child will help him to enjoy his meal
and want to eat.
If you are alone with your child, you can make mealtimes pleasant
by telling stories, singing songs and playing games.
When children are not hungry and refuse to eat, make sure they
drink more during the day, especially a “food drink” such as sour
milk (amasi), milk, custard, yoghurt, soup or fruit juice.
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Sores in the mouth that stop a child eating
Your child may have sores in the mouth or throat that make it
painful for the child to swallow. But even if it is painful, the child
MUST eat enough of the foods described under general advice on
GOOD FOODS – in the chapter on Making Good Food Better.
Some things to try, to help your child eat:
• Give paracetamol (Panado) half an hour before feeds to reduce
the pain.
• Give soothing drinks to the child like sour milk, yoghurt and thin
porridge. Avoid acidic (sour) cold drinks like orange juice, and
sour food like tomatoes or spinach.
• Soft and mashed food will be easier to eat.
• Give food that is warm but not too hot.
• Give the child cold food such as ice-cream, or ice-lollies and ice
cubes to suck.
• Give food that is not too spicy. Plain food without even salt is best.
• Do not give curried food or chillies as they will make the pain worse.
If your child has difficulty in
feeding himself or herself
Children living with HIV may
become clumsy and lose the skills
they used to have in feeding
themselves.
You may need to cut food up small,
or make porridge thicker or use a
smaller spoon – anything that will make it easier for the child.
PART 3 - HIV stages & treatment
Note about the names of medicines:
You will also have to help the child more, yourself, to make sure
that he or she gets enough to eat.
Nausea and vomiting – how to prevent this
Remember that the child has to eat even though he does not feel
like it.
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Give food that the child likes. Let children eat small meals and rest
after eating. They should drink fluids between meals and not with
meals.
Cold foods such as jelly or iced juice might be better than warm
cooked foods.
Bread, thick porridge and rice should be eaten plain, without gravy,
if they make the child feel sick.
Extra fluids must be drunk, to replace losses from diarrhoea or
vomiting.
A very good mixture to help children not to get dried out (dehydrated)
is the mixture called Sugar Salt Solution. (see prge 104)
Dry toast, rusks and dry crackers may help to relieve nausea.
Do not give food that is too sweet or too fatty as they may make
the child feel worse.
Until the child is better, do not give tea or coffee, or milk and milk
products (such as yoghurt) or very salty or spicy foods.
Special comfort for a sick child
These children have a particular need for loving care and someone
who can help them cope with discomfort and pain.
Make sure the clinic or hospice gives painkillers so that you can
keep your child comfortable.
Sometimes if a child is in bed for a long time they may get bed
sores. These can be prevented. Every two hours, change the
position of the child in bed, even at night. As often as possible get
the child out of bed and let them sit in a soft chair. Bath the person
every day, and rub gently with baby oil. Straighten the sheets often,
as wrinkles can hurt the skin. Use cushions or pillows to prevent
bony parts from rubbing.
It is very stressful for you to see your child so ill, so see if you can
get help from family or friends.
Children cannot always tell you if they are in pain, so watch your child
carefully for signs of pain:
• A child in pain may be fretful and unhappy and clinging.
• A child may also rub an ear or side of the head (earache or
toothache).
• Pain can also cause restless movements such as shaking the
head, moving the arms or legs, wriggling the body and refusing to
lie still to rest or sleep.
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Most pain can be treated or made less. Ask for help for your child’s
pain if the health workers seem to be treating the illness but not the
pain. Severe itchiness can also cause distress and needs to be
treated.
Try to find the cause of the pain. If you can not work out what is
causing the pain, ask for help from your health care worker. The
best treatment is to remove the cause. Different causes have different
treatments.
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Helping your child in pain
Persuading the child with diarrhoea to eat and drink:
Persuade the child to drink enough fluids and give Sugar Salt
Solution that you mix yourself, or use the Oral Rehydration
Solution if you have been given this.
Make sure the child has a drink every time he or she has to go to
the toilet (passes a stool).
The child has to eat even though he doesn’t feel like it (especially
bread, rice, pap and porridge).
Do not give the child the
skin and pips of fruit and
do not give vegetables (no
peas and beans for example)
until the diarrhoea stops.
Do not give food that is left
over from the previous day,
such as stale or old bread
or porridge. Feed freshly
prepared food.
How much pain do you feel?
Ask your child to talk about these pictures showing someone in pain.
Ask which of the faces shows no pain? Which face shows the worst
pain? Which faces show that the pain is not too bad.
When the child is in pain, ask him or her to point to the face that shows
how sore the pain is for them.
Talking about the pain helps the child to feel in control.
You should use the word for showing pain that the child knows –
“Ouch” or “Itsch” or “Eina” and so on.
Where is the pain?
Use pictures such as the following, or
a doll to help a small child talk about
where the pain is.
Help your child tell the nurses and doctors about the pain
Use the pictures opposite when you take the child to a clinic or health
centre, so that you can help your child describe:
Where the pain is.
How much there is or how strong it is.
What it is like: sharp, dull, sore, aching, burning…
Believe your child when he or she tells
you about feeling pain, whether it is
physical pain or hurt feelings, worry or
fear.
Remember that inner feelings can
cause headaches, stomach pains and
other physical symptoms.
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Some ideas for you to try, to help your child feel less pain or itchiness:
Hold your child and rock him or her.
Stay next to your child and hold his or her hand.
Stroke the skin above or below the pain.
Put something cold on the place that hurts.
Offer cold foods or ice to suck for mouth pain.
Help to get his or her mind off the pain by telling or reading stories,
listening to music, looking at pictures or blowing bubbles.
You can make the child a lump of soft play-dough using a little flour,
water and salt mixed together with a very little vaseline or oil. Rolling
and squeezing the dough is very soothing.
Perhaps he or she can watch TV, listen to the radio or play games with
you or with friends.
Encourage your child to relax by doing deep breathing or imagining a
favourite place or happy activity. Ask how it feels to be in that happy
place and ask what it might look like; what sounds might be heard and
even how it smells.
Some parents get a child to talk to his or her body, especially the part
that is troublesome, to tell it to get well and strong! This makes the
child feel less helpless.
You might suggest that the child “takes the horrible pain and throws it
away!” The child decides where and how to throw away the pain. Pull
faces as you play this game and try to get the child to laugh – laughter
is relaxing and healing.
Your stress is felt by your child; so try to relax yourself.
Tell the doctors and nurses the words you child uses to talk about pain.
Always tell your child the truth about tests or treatments that will hurt.
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• Frowning and screwing up the eyes can also show pain.
• Hunching the shoulders and pulling the legs up towards the chest
may show stomach-ache.
• The cries of a painful child are restless and seem to come and go
without reason.
• When in extreme pain, a child may go very quiet.
Adapted by the Children’s Rights Centre for educational purposes, with acknowledgement to The
François-Xavier Bagnoud Center.
Give medicine for pain as directed by the nurse or doctor
It is not right to leave a child suffering pain when there are medicines
that will help.
If you visit the clinic once a month, ask for enough painkillers for the
next month.
If your child finds a syrup easier to take than a pill, ask for the syrup.
If the clinic tells you to give medicine every 4 hours for pain, then do
this, looking at a clock. Do not wait for the child to be in pain before
giving the medicine, as the painkiller may take up to half an hour to
work. Also once the pain is felt, it is more difficult to make it stop
hurting. Preventing is best.
Ask if you can give an extra dose at night to help the child to sleep
through the night.
Ask if you can give an extra dose in between the set times, if the child
is still in pain.
Ask if the painkiller will make the child constipated, and if so what you
can give for this.
Severe pain:
• Morphine syrup (available in clinics).
• Morphine injections (only in hospitals).
Opioids (morphine) do NOT usually result in addiction. Morphine is
the best way to control severe pain. If morphine is reduced or stopped
this should be done gradually, making the dose smaller and smaller.
Morphine will also help with diarrhoea and coughs that do not respond
to other medicines.
Addiction – this happens when someone becomes dependent on a
drug and cannot manage without it – addiction to alcohol means that
the body is so used to alcohol that it cannot function well without
alcohol. An addicted person has a craving that he or she cannot
control.
Side-effects
Some medicines may have side-effects. A side-effect is something
bad that the medicine causes “on the side” to the patient, as well as
the good it is doing.
Some medicines make one sleepy, others can cause stomach cramps
and vomiting. Some may cause headaches or other pains.
The side-effects often do not last for more than a short time, and if
they are very bad, then other medicine can be used to help. For
example there are medicines to control vomiting and nausea.
Side-effects should not stop someone from taking life-saving
medicines, unless your health care worker has told you to stop.
Recommended drugs
Mild pain:
• Paracetamol syrup (Panado is one brand of paracetamol drugs)
• Ibuprofen can be used to reduce swelling.
Moderate pain:
• Tilidine (brand name Valoron). But this is not good for children
under a year.
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Make sure doctors and nurses do the same.
Find out ahead what tests or treatments will be done and what will
happen. Talk to your child ahead of time about it. Help your child think
of ways to get through the test.
It is a great help to young children for them to play-act the treatment –
let the child be the doctor or nurse and either have a doll or teddy as a
patient or you or another child can be the patient.
POSSIBLE HEALTH PROBLEMS –
OPPORTUNISTIC INFECTIONS
SKIN INFECTIONS
There are different types of skin problems. It is important to be able to
tell the difference, because different problems need to be treated in
different ways.
Take a good look at the skin –
Are there small spots or sores?
Do they form a circle shape?
How much of the body is covered by the skin problem?
Where on the child’s body is the problem – one place? All over?
Is it dry? Or wet? Or neither?
How does it feel – painful? Itchy?
Each problem needs a special treatment. Ointments given for one skin
problem should not be used on others unless a doctor or nurse says
they can.
Find out if the ointment should be rubbed in, or put on gently, dabbing
with cotton wool. Should the problem part be covered with a bandage
or plaster, or not?
are not disinfected in this way.
Keep dry skin from cracking by using a skin-lotion or skin-cream.
Use an “aqueous cream” instead of soap on a baby’s skin. Or use a
very gentle baby soap.
Do not use Vaseline or other petroleum jellies if there is a rash with
pimples, as it sometimes makes a rash worse.
Keep your own hands very clean, washing them often.
Boil nappies or soak them in a Jik or other bleach mixture (see chapter
on Keeping Clean page 49).
Treatment of sores
The clinic is likely to give you gentian violet or mercurochrome to be
put on the sores to prevent them spreading.
The doctor may give an antibiotic if there is redness round the sore, or
if there is any pus (thick yellow or green fluid) coming out of the sore.
This is a sign of germs in the blood. The doctor or nurse may also give
an antibiotic medicine for the child to swallow that gets rid of germs.
A cream to be smoothed onto the sore may be given. This may be a
hydrocortisone cream to be gently smoothed on the skin where the
eczema is seen.
If this does not work, bring the child back to the clinic where the doctor
will try other ointments such as betamethazone valerate, andnystatin or
terramycin, with a steroid. These attack the germs in the sore.
DRY, ITCHY SKIN AND SPOTS, RASHES AND SORES
The skin may be dry and itchy. There may be a rash (pimples or spots
close together). The skin may peel and form cracks and sores (eczema).
Prevention
See the chapter on Keeping Clean, especially Protecting the Skin on
page 47 and not using a face-cloth unless it is washed with soap daily
and left to dry in the sun. Damp cloths often spread infections if they
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3
IMPETIGO
Impetigo forms sores that have crusts on the skin, usually around the
mouth or nose. Deeper sores are usually on the legs. These sores can
be more severe and recur more often in children with HIV.
In KwaZulu-Natal they are often known as “Natal Sores”.
Prevention
Keep your family and home very clean. Keep nails short. Clean any
cuts or insect bites with a mixture of water and savlon, dettol or other
suitable disinfectant.
Treatment
You and your family should wash hands with disinfectant soap if
anyone has impetigo. It is goes from one person to another and
spreads to many people easily.
Children with impetigo need an antibiotic medicine. This is usually
given by mouth. This may be erythromycin OR cloxacillin OR cefalexin.
A cream such as terramycin or another antibiotic (Bactroban ®) will
need to be put onto the sores.
RINGWORM, also known as Tinea, and other fungal infections
“Ringworm” is seen as a circle with a red, raised edge. They are often
found on the scalp and cause bald patches. They are also found on
the body. They often become infected.
Fungal infections may also be found under the fingernails and toenails.
Prevention
Keep the child’s hair short and clean. Keep fingernails and toenails
short and clean.
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Treatment
Ringworm on the body can be treated with Whitfield’s ointment.
The child may be given a medicine to take by mouth for 6 weeks. Its
name is griseofulvin. The cream to be applied to the sores is
imidazole.
CHICKENPOX AND SHINGLES, also called herpes zoster
Red pimples and itchy blisters all over the body are most probably
chickenpox. Children with HIV can get this more severely and more
than once. Children with HIV can also get shingles (herpes zoster).
Shingles usually brings out a rash like the chickenpox rash, but in a
band, on one side of the body, only. Shingles only occurs when the
body is weak, and not able to fight infections well.
Treatment
Calamine lotion may help to stop the itching. The doctor may
give anti-histamine or even a cortisone cream if the rash is very
troublesome.
A treatment called acyclovir should be given. Acyclovir can help the
chickenpox or shingles to heal more quickly, and so prevent further
problems. It should be started in the first three days. If your clinic or
hospital does not have it, then ask the doctor for a prescription and, if
at all possible, buy it from a private pharmacy. It is expensive, but if
taken early enough it can prevent other problems and make the pain
less severe.
One problem is infection of the blisters that can come from the child
scratching them. During the day try to give the child something to play
with, to keep the hands busy. At night you can put socks or gloves on
his or her hands to prevent scratching.
If the blisters get infected other medicines might be needed such as
amoxycilin, flucloxacillin and maybe antibiotics to go on the skin.
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If these do not work then the child may be given medicine to take by
mouth as well - antibiotics or prednisolone.
WARTS
HEAD AND THROAT
MOLLUSCA CONTAGIOSUM
These are small rubbery pimples often with a dent in the centre,
usually found on the face, around the mouth and nose. Sometimes
these can be quite big. They may cause problems if they are on the
eyelid. It is not necessary to treat them if they are small and just a few,
but, if they trouble the child, ask for him or her to be referred and sent
to see a skin specialist.
“HEAD COLDS” AND INFECTIONS OF THE EARS AND EYES
Children living with HIV often get long-lasting colds and infections of
the throat, nose, ears and eyes.
Noses may be blocked and run.
Ears may be painful and there may be a yellow discharge. This should
be wiped away, but do not poke into the ear, or put any drops in the ear
unless the doctor has prescribed them.
Eyes may have yellow crusts on the lids and be red and sore. Wipe
them gently with clean wet cottonwool and throw it away afterwards. If
you use a cloth, make sure that it is washed with soap and hot water
and hung in the sun to dry.
If not treated, these infections may get worse and also spread to the
throat and chest, so take the child to the clinic as soon as possible.
Treatment
Nose-drops, eye-drops and ear-drops may be given. If your child is not
on co-trimoxazole (Bactrim) this would be a good opportunity to ask for
it. Extra medicines may be given .
Discharge. When an infected ear has yellow pus coming out of it, this
is called a discharge. The nose and eyes and open sores may also
have a discharge if they are infected, and so too may the private parts.
Pus is made up of dead blood cells and is often full of germs. It may
be white or grey or yellow, and may have blood in it.
FEVER BLISTERS OR ‘COLD SORES’ (ALSO CALLED HERPES)
These are sores in and on the mouth. They start as clear blisters, but
become crusted with hard skin and turn into sores. They can be very
painful.
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Sometimes children can get very flat warts usually on the forehead.
These are usually mild and do not require treatment. If your child
develops severe warts, especially in the genital area, you should ask
for him or her to be sent to see a skin specialist.
THRUSH
Watch out for white or red patches
in the mouth or throat.
Thrush may make the child eat or
drink less because swallowing is
difficult and painful. This may
cause the child to dribble from the
mouth.
Note, however, that newly born
babies often get thrush in the mouth or nappy rash, and this warning
does not apply to them unless it is very bad – for example if it stops
them eating or swallowing properly.
Treatment
The best medicine you can get from the clinic is nystatin (Mycostatin)
drops. They are given half an hour after feeds, which should be about 6
times a day. This should be done for 7 days.
If the thrush does not clear, miconazole (Daktarin) cream can be
applied 4-6 hourly to the inside of the mouth for 7-14 days.
If the clinic cannot give you the above medicines, the staff may give
you gentian violet, to be put on the white patches, gently, after meals.
Give paracetamol (Panado ®) to relieve the pain. There are also
pain-killing mouthwashes or cream, choline salicylate gel (Tegel‚
Bonjela) or benzymadine mouthwash (Andolex).
If the mouth thrush refuses to clear, or if there is thrush in the throat,
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then the health worker is likely to give fluconazole, which will need to
be taken for 21 days.
If the baby is being breast-fed, the health worker should check the
mother for breast thrush and treat if necessary.
Extra treatment
Ask to be sent to a hospital if the clinic does not have the right
medicines or if the child is unable to feed, has difficulty swallowing, or
is vomiting all feeds.
In hospital fluconazole can be given into the child’s blood through a
needle from a “drip”.
Intravenously – into a vein, straight into the blood, through a hollow
needle. The needle is joined by a tube to a bag with the mixture
needed by the sick person. It is often called “a drip”.
TEETH
Black marks may appear on the teeth, showing decay with holes
(dental caries). Take the child to a dental clinic. Regular check-ups
are needed. Ulcers (infected sores) may form on the gums round the
teeth.
Prevention
Teeth should be brushed morning and evening and after every meal.
Use a soft toothbrush and a little toothpaste. Give your child clean
water to drink after a milky or sweet drink. Wipe the inside of a baby’s
mouth after a feed, with a clean, soft cloth.
BRAIN INFECTION
Watch out for the following signs of a brain infection and take your child
for treatment if he or she has them:
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Treatment
Do not use ointment.
Gentian violet is available from clinics, and sores should be treated
when they first start.
If possible get a medicine called Acyclovir, which is on the “Essential
Drug List” for all clinics. But it may not given by government clinics if
they run short, and you may have to buy it from the chemist. It is
expensive, but can bring great relief.
Severe headaches
Headaches may be caused by an infection of the fluid round the brain
(meningitis). Early treatment is important. Bring your child to the doctor
or the nurse.
Changes in behaviour
Your child may have difficulty in walking or doing usual activities, and
dizziness or trembling of the hands or feet. These are also warning
signs of an infection in the brain. The child may also become anxious
and frightened for no reason.
Treatment
The child will need urgent help to ease the breathing, and then
medicines such as antibiotics in hospital. Your child is likely to be asked
to come back to see the doctor after two days. If the child gets worse
suddenly, bring the child back immediately to the hospital or clinic.
Prevention
Your child should be taking the medicine co-trimoxazole (Bactrim ®).
This is very important as it helps prevent chest infections. A child who
is found to have HIV needs co-trimoxazole daily for his or her whole
life.
Early treatment is important.
TB or Tuberculosis
CHEST INFECTIONS AND BREATHING PROBLEMS
Chest infections may last longer than usual, and keep coming back.
The child is likely to have a sore throat, a wet cough, and a blocked
nose.
If the child has breathing problems, take him or her immediately to
the clinic.
Signs of breathing problems may be that the child complains that
his or her chest is “tight” and finds breathing difficult or painful.
Other signs of breathing problems are that the child is panting
(breathing very fast), or the stomach may go in and out (instead of
the chest), or the nostrils may move outwards (flare) at every
breath, or the child may need to sit up to breathe.
Breathing may also be noisy and harsh. In severe case the child
might move about very little, seem very tired, and even become
unconscious.
HIV and TB go hand in hand very often. You should take the child to
the clinic for TB tests if any of these are happening:
• An adult living in your family has active TB
• Your child has a fever that lasts longer than one week
• Your child has an on-going cough
• Your child has on-going weight loss or poor weight gain
(checking with the Road-to-Health chart)
A doctor should check your child for TB. It is not easy to find out
whether a child has TB or not and different tests will be done.
Any child, even if they do not have HIV, who has been in close contact
with someone who has TB of the lungs needs protection with the drug
INH. This will need to be given for 6 months.
This may be due to pneumonia, a chest infection where the lungs
cannot work properly. There is a severe form of pneumonia that is
common among those living with HIV called PCP.
The doctor will look at all the following:
• Signs of illness in the child
• A skin test (tuberculin test) – a patch put on the child’s skin to
see if it goes red. This is not a sure test by itself, on children
with HIV
• Chest X-ray
• Finding out if the child has had contact with an adult who has
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CHEST
What you can do if your child has TB
Make sure that the child takes the medicines every day at the same
time, for 6 months. If you stop the medicines when the child seems
better, after a few months, the TB will return, and the same medicines
may not help anymore (drug resistance).
Check other members of the family in case they also have TB.
Treatment
Your child will be given medicine to take for 6 months and you must
make sure that he or she does not stop before the end of the 6
months.
In most cases for the first 2 months your child will be given a
combination of Rifampicin/INH and Pyrazinamiin. Then for 4 more
months your child will have Rifampicin/INH only.
You may hear that your child is on DOTS. This is a course of medicine
where someone watches to make sure the medicine is taken. It stands
for ‘Directly Observed Treatment Short-course’.
If your child has a severe form of TB, he or she will be admitted to
hospital, and have treatment for at least 9 months.
Stopping the treatment is dangerous as the TB might come back in
a stronger and more dangerous way – it might be drug resistant.
Drug resistance – an infection can grow stronger if it has only small
amounts of medicine to fight, or it only has to fight medicine for a short
time. It then gets used to the medicine and that medicine will not work
again against it. We say the infection is resistant to the drug
(stronger than the drug).
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Prevention
If your child has had close contact with someone who has TB, he or
she needs medicine to prevent TB. This is especially important for
children under 5 years old. The clinic will give them INH for 6 months.
TB Meningitis
Children with other kinds of TB such as TB of the brain (meningitis)
need hospital treatment. This treatment involves several medicines
and usually lasts 9 months. TB meningitis can cause permanent brain
damage and it is important for a caregiver to take a child for treatment
as soon as possible. Symptoms can be a severe headache, stiff neck,
a fit, or loss of consciousness for a short time.
If your child is in pain, try to make sure that the health care workers
are giving pain medication.
Extra food and vitamins for children with TB
All children with TB need extra food and vitamins. Nine food parcels
are included in the TB control programme during the first 2 months of
treatment.
You should ask at the clinic for
your child to be included on
the food supplementation
programme, the Protein
Energy Malnutrition (PEM)
scheme. If this is not possible,
ask about other state or
community food
programmes, and get advice
on the best food possible. Ask
the clinic for general vitamin
pills or syrup for your child.
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active TB of the lungs
• Tests of spit (saliva) from the child’s mouth and throat, and
tests of the juices from the child’s stomach
DIARRHOEA – “RUNNY TUMMY”
Sometimes diarrhoea or the runny tummy can be treated at home;
sometimes you may need to take the child to the clinic; other times a
child will need to go to hospital.
You can help your child by:
Knowing when to get help
Giving extra drinks right away
Making sure your child continues to eat small amounts so that
they will not get weaker
Sometimes a runny tummy can be very serious and then you should
not wait to get help. Take your child to the clinic immediately if he or
she has:
Loose, watery or slimy stools more than 3 times a day
Loose stools for more than 2 weeks
Blood in the stools
Diarrhoea with high fever or if also very ill
Seems sleepy all the time (lethargic) or is unconscious
The eyes are sunken
He or she is unable or refuses to drink
The skin, when pinched, stays pinched-looking for more than 2
seconds.
If your child is not very sick, you get help at the “Outpatients”
clinic.
If your child is not sleepy, and drinks thirstily, this is good. In this case
the clinic will most probably give you a special drink to give your child
while you stay at the clinic, over the next 4 hours. Give the amount the
nurse tells you, and more if the child wants it.
If the child vomits, wait for 10 minutes, warm the drink slightly if
possible and continue giving the drink.
You will be encouraged to continue breast-feeding, if your baby is
breast-fed, or you can give any other fluid (any drink).
After 4 hours, if the child is worse, he or she should be admitted to
hospital. If the child is no worse and no better, you will be asked to
continue the special drink for another 4 hours or so.
If there are no signs of drying up (dehydration) or the signs have
disappeared with the above treatment, you will be allowed to take the
child home.
Blood in the stools (dysentery)
If your child is very sick, he or she will be admitted to hospital.
If your child is getting dried up (dehydrated) it is very dangerous. In
Take your child to the clinic at once if there is any blood in the stools.
If the child is drying up (dehydrated) the treatment will be the same as
for diarrhoea if the child is over one year old. Children under one year
with dysentery should be admitted to hospital.
If your child is over 1 year, and you are told to treat him or her at
home, make sure the child continues to eat, small amounts, frequently.
If the child vomits the medicine every time, or there are signs of drying
out such as sunken eyes, sleepiness, refusal to drink and wrinkled skin
(as described above under diarrhoea), bring the child back as he or
she should be admitted to hospital.
In any case, you will need to bring the child back after two days for the
health workers to see.
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You will also need to take your child to a health care worker if the child
has loose stools for two weeks or more.
Treatment
The treatment will depend on how sick your child is.
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hospital your child will most probably be put on a “drip” – a tube that
takes water from a plastic bag straight into your child’s body.
Special treatment is also needed, if a child with diarrhoea is very ill
with a high fever, or has had diarrhoea for more than 14 days.
LOWER BODY
Prevention of diarrhoea
Cleanliness and good food will help prevent diarrhoea (see page 47).
The child must continue eating
Stomach infections may stop your child’s body from using or absorbing
food properly, stopping the body from making good use of the food that
has been eaten. HIV already stops your child from growing fat and
healthy, and diarrhoea makes it worse. This is why the child living with
HIV MUST CONTINUE EATING even with a stomach infection. Give
your child small amounts of food, and give food often. Give whatever
is easily available, cheap and what the child is used to.
To prevent dehydration
SUGAR SALT SOLUTION
Clean a one-litre bottle
Fill with clean water. It is best to boil the water, then cool it
Add 8 teaspoons of sugar
Add half a teaspoon of salt
Stir to mix well (dissolve)
Taste to see if it tastes like tears – not too salty
Offer a little at a time
Oral means to take by mouth.
Rehydration
- re means again
- hydrate means adding the water that is needed.
Oral rehydration salts may be given to you by the clinic or a chemist.
They must be mixed with cooled boiled water as instructed. Give to
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the child or baby often if he or she has diarrhoea.
VERY THIN PORRIDGE is also good for re-hydration. Boil a little
mealie-meal in water and add a pinch of salt.
Sugar-Salt-Solution or ORS should be given as follows:
For children up to 2 years old – give between 2 tablespoons and half a
cup for each loose stool (50 ml -100 ml).
For children over 2 years old – give between half a cup to a cup for
each loose stool (100 ml to 200 ml).
BLADDER INFECTION
Pain or burning when urinating and frequent urination are symptoms of
a bladder infection. If untreated the kidneys may get infected too.
Treatment
Encourage the child to drink plenty of water to weaken the acid in the
urine. Citro-salt can be mixed as a drink, and may be given for the
child, at the clinic, as well as an antibiotic medicine.
VAGINAL THRUSH IN GIRLS
White patches that itch and burn the genital area in girls are signs of
thrush (candidiasis). There may be redness, as well.
Treatment
The clinic may give the child nystatin (Mycostatin) medicine to take
daily for about a week. There is also a cream, miconazole (Daktarin)
which can be smoothed onto the white patches.
If the clinic cannot give you the above medicines, the staff may give
you gentian violet, to be put on the white patches, gently.
If the thrush refuses to clear the health worker is likely to give
fluconazole, which will need to be taken for 21 days.
Give paracetamol (Panado ®) to relieve the pain. A warm bath with a
teaspoon of bicarbonate added to the water is soothing if it is itching.
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Treatment of dysentery
The clinic will give you the medicine nalidixic acid to be taken by the
child 4 times a day for 5 days. The clinic will also give your child an
extra dose of Vitamin A, unless the child has had a dose of Vitamin A
during the previous month.
ANTI-RETROVIRAL TREATMENT (ART)
WHAT ABOUT ANTI-RETROVIRAL TREATMENT (ART) FOR
MY CHILD?
Why give your child ARVs?
At some stage children start to be sick more often, unless they have
ARV treatment, and are often very sick. Their body defences are very
weak. They may have to stay in bed for several days. They will
recover more slowly than usual from coughs and colds or other infections. Even older children will not be able to care for themselves and
will need to be washed and fed.
ARV treatment (anti-retroviral medicines) will help children with HIV to
become stronger – the CD4 count (the number of guard cells in the
blood) will go up, and the amount of HIV germs (virus) in the blood will
go down – often until is cannot be seen at all in the tests (undetectable
level). The child will gain energy and weight and appetite.
ARVs do not cure HIV and AIDS, but they help the body to fight the
virus and keep it at a low level.
Talk to your child’s health care provider to see if he or she needs to
start ART. If the health facility that you go to does not offer it, ask for
the closest one that does.
If you cannot get your child to a facility and want help to get your child
on to ART then in South Africa contact:
Treatment Action Campaign – telephone 021 788 3507
Children’s Rights Centre – telephone 031 307 6075
ARVs stands for Anti-RetroViral medicines.
ART stands for Anti-Retroviral Treatment. Sometimes it is called
HAART or Highly Active Anti-Retroviral Treatment when more than
one drug is used.
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The government of South Africa has promised that ART will be offered
for all who need it, as soon as possible. For free treatment at state
clinics and hospitals, find out your nearest approved site where antiretroviral treatment is being given.
At present (2007) children are only being treated for free at state
hospitals – not clinics – but we hope that they will soon be treated at
all sites.
How the doctors decide when a child should start ARV treatment
Not every child living with HIV needs ART.
The doctor has to decide whether the child should have ART or not.
The doctor will look at two things –
(1) the health signs in the child
(2) whether the child will be getting on-going support from his or
her family.
The doctor will look at the following health signs:
• Has the child got moderate or severe infections
• Has the child been hospitalised for AIDS related illnesses for
long periods or been admitted more than twice?
• Has the child a very low CD4 percentage?
The doctor will look at the child’s family or care givers.
The doctor must be satisfied that the child will “adhere” to the drugs.
That is, that all the drugs will be taken daily, at the right time, in the
right way, in the right amounts, for the rest of the child’s life.
There should be at least one care giver who is able to supervise the
child and make sure that he or she is taking the medicines, in the right
way, or who will give the medicines to the child. If possible there
should be another adult or responsible person living in the same house
(or a neighbour) to help with the child’s ART, in case the care giver falls
ill or travels.
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4
Adherence – what is it?
Adherence means that the drugs will be taken every day, without fail,
at the right time, in the right way, in the right amounts, for the rest of
the child’s life.
A virus that does not respond to a drug is called “drug resistant”.
Why is adherence important?
ARVs do NOT cure HIV and AIDS. They help to stop the virus from
making copies of itself and spreading in the body. If the child stops
taking the drugs, the virus immediately starts spreading again.
What is more, the virus may have become resistant to those ARVs,
and then they cannot be used any more. Other different ARVs must be
given instead to the child (Second Line Drugs on page 109). These
may not work so well – and there are no others on the list at state
hospitals, at present.
LEARNING ABOUT ARV DRUGS
It is very important for you to know what treatments you or your child are
taking. Learn the names, how often they must be taken, and the amount
that needs to be given every time. This is called the “medicine schedule”.
It is also important to know what side-effects may happen with each drug
so that you can expect them, and know what will help, if they do happen.
FIRST LINE DRUGS - In public health facilities, the following drugs
may be used first:
For children 6 months old up to 3 years
Stavudine also called D4t or Zerit ®
For children older than 3 years and
over 10 kg
Lamivudine also called 3TC or Epivir ®
Stavudine also called D4t or Zerit ®
Lopinavir and Ritonavir ® also called
Kaletra ®
Lamivudine also called 3TC or Epivir ®
Efavirenz also called EFV or Sustiva ®
The drugs used by private doctors may be different. At the time that you
are using this book the public health facilities may be using different drugs.
If the names of the first line drugs are different from those above, you,
or your child, can write them down here:
Teenagers need special care because they have a growth spurt
(period of very rapid growth) and change in body shape and weight
(start of puberty). This means that the drugs must be changed from
child-doses to adultdoses.
2.
3.
SECOND LINE DRUGS - Sometimes your child’s drugs will be
changed. The doctor may change the drugs if the first drugs are not
working well or if there have been side-effects.
For children 6 months old up to 3 years
Treatment of mothers,
care givers and other
family members
Didanosine also called ddl or Videx ®
Zidovudine also called AZT or Retrovir ®
EITHER
Didanosine also called ddl Or Videx ®
Nevirapine also called NVP or Viramune ®
Lopinavir and Ritonavir ® also called
Kaletra ®
OR
The government has
promised that mothers
and other family members
will get the health care
they need, and this
includes ART if needed.
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Zidovudine also called AZT or Retrovir ®
For children older than 3 years and
over 10 kg
Efavirenz also called EFV or Sustiva ®
You, or your child, can write the names of the second line drugs here:
1.
2.
3.
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1.
There are many ARVs but these are the ones used in South Africa at
present.
Stavudine (d4T) syrup needs to be kept in a fridge. If you have no fridge,
pills may be given instead of the syrup, or a capsule. The
capsule is opened and the amount of medicine your child needs is taken
out of this and mixed with water and given to him or her to drink. The
rest of the medicine must be thrown away. Make sure you understand
clearly how to open, dissolve and give the right amount. If you are not
sure, ask the doctor or nurse or pharmacist to explain again.
Didanosine (ddI) must be taken alone, on an empty stomach. It must
be taken at least an hour before a meal, or two hours after a meal.
Tablets should be dissolved in at least 30 mls (6 teaspoons) of water.
Look to see how big the tablets are – if your child is told to take
100 grams and the tablets are only 50 grams, then, of course, he or
she will need two tablets.
HOW CAN I HELP MY CHILD STICK TO TAKING THE DRUGS
(ADHERENCE)?
Learn all you can about giving your child the ARVs.
Make a plan to help you remember the drugs – how many, when
and how?
Make sure you understand the way each medicine must be given – the
Medicine Schedule. Write down and learn which medicine, how much,
when and how it should be given – before or after meals and so on.
Do not give more medicine than the health-worker has told you
– this is an “overdose” and it can harm your child.
Do not share medicines meant for one child with other family members
– this is also dangerous.
Getting it right
If the doctors, nurses and other clinic team members feel that your
child is not getting the medicines properly, they may stop giving your
child the medicines in order to stop the HIV becoming resistant. This
will be a last resort!
You can see how important it is that you make SURE that your child
gets the medication exactly as you have been taught.
Sometimes the medicines may have side-effects or the treatment may
not be working as well as expected – and then the team may decide to
change the medication. If this happens, make sure you learn about the
new treatments and how to give them properly.
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Breaking pills. Ask the
nurse to show you how to
“score” or mark a pill
heavily, so that it breaks
along that mark.
PART 3 - HIV stages & treatment
Your child’s life depends on the drugs being taken correctly and
regularly, every day. If there is a break in taking the drugs, the HIV
may grow resistant and the drugs will not longer work.
Drinking a liquid medicine. Make sure you
know how to measure
very carefully a
liquid medicine that has
to be drunk.
You and your child with HIV - Living positively
111
Syringe. For babies it is best to squirt medicine into their mouths
using a syringe. You need to be taught how to do this at the hospital or
health centre. There are various ways you can try. When the medicine
is at the back of the mouth, the baby will usually suck on a dummy and
swallow the medicine without much of a problem.
Not a bottle. Do not to mix the medicines in a bottle feed, because if
the baby does not finish the bottle you will not know how much
medicine was swallowed.
Getting used to it. Babies quickly get used to taking medicines. If
children have medication from when they are tiny then it doesn’t seem
to be any problem in getting them to swallow it, as they are used to it.
Giving medicines to older children
Try different ways to give the medicine, to see which is the best way
for you and your child. Try to let the child choose how to take the
medicine as this makes them feel they are partners in their own health
care.
Ask the nurse about the various ways medicines can be given:
Can it be dissolved and mixed with water or milk or juice?
Can it be crushed and added to something sweet?
Or can it be mixed with tasty, savoury food like peanut butter?
Big tablets can be broken into pieces if the child prefers to
swallow them that way.
Or you may be able to get a syrup instead of tablets. Usually
the children, even the young ones, seem to prefer the tablets to
the syrups.
Routine. Children who have taken medication for a long time are in a
routine and so it is no hassle. Starting older children can be much
more difficult, but try to make it just another routine in their lives.
Do not threaten or punish children who refuse to take medicine – this
will put them under stress and make them more likely to vomit or
choke.
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No rewards. It is better not to bribe children or offer rewards – do not
forget that they will need to take medicines for the rest of their lives.
Clear message. If a child refuses to take medicine, stop all other
activities for the child until he or she agrees. It is “time out” – no play,
no other food or drink and no chatting. This sends the message that
the medicines are essential. Ask all members of the family to
cooperate in this.
But usually, taking the treatment is not a problem, as the child can see
that taking the medicine makes him or her feel better.
Encourage the child to keep a diary, to record all doses taken. You can
draw a star if all doses are taken correctly for a week!
Keep a diary – for your child, or with your child, to mark off the
days as the medicine is taken. Perhaps you and your child can
make a picture or checklist as a worksheet, so that the child, and other
family members, understand this “Medicine Schedule” (see next page
for an example).
Encourage your child to understand why he or she has to take the
drugs.
Form a support group or buddy system, especially for older children
and teenagers – where children can encourage each other to keep
taking the drugs.
Make sure you have a support group or buddy for yourself, too!
AS SOON AS THE CHILD IS OLD ENOUGH,
ASK HIM OR HER TO HELP YOU REMEMBER
THE MEDICINES!
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PART 3 - HIV stages & treatment
Giving medicines to babies
Note down whether the medicine is given once, twice or 3 times a day.
Must it be given before a meal or with food or after food?
If it must be taken on an empty stomach, how long before a meal?
Make a plan to give the medicine at the same time every day.
Write down or draw a picture of how many pills or drops of medicine
must be given.
Write down if it must be given with water or food or by itself.
Does the drug need to be refridgerated?
Any other notes:
Medicine Schedule
Name of medicine ONE:
What does it look like?
How often is it given?
When is it given?
How much is given?
How is it given?
Name of medicine TWO:
What does it look like?
When is it given?
How much is given?
How is it given?
QUESTIONS TO ASK THE HEALTH WORKER
Name of medicine THREE:
• What to do if the child vomits the medicine?
• Must the drug be kept in a fridge?
• Can other medicines be given at the same time, such as
paracetamol (Panado) or an antacid or anti-histamine?
• Do any of these drugs have side-effects, for example affecting
birth-control pills for older teenagers?
• Do these pills affect malaria or TB treatment – can they be
taken together?
• What should I do if the child does miss taking a dose?
What does it look like?
How often is it given?
When is it given?
How much is given?
How is it given?
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PART 3 - HIV stages & treatment
How often is it given?
MORE PLANS
Make sure you know what side-effects need special attention.
Plan what to do over weekends and holidays when the routine is
different – what can help you to remember?
Plan how to fit in this schedule to your life especially if you go to work.
Plan how it will fit into your child’s life if he or she goes to school or to
a crèche or day-care centre.
What other people need to be told and how will you tell them?
What will you tell your child to encourage him or her to take the drugs?
(See page 26 Telling my child )
If the side-effects cause a great deal of discomfort or if they continue
for more than a few weeks, take the child back to the clinic – the doctor
may decide to change one of the drugs.
Children are very good at hiding pills they do not want to swallow –
someone must WATCH them swallow the pills. They must not hold
them in the mouth and then spit them out, later!
Perhaps use a story or song to help the child.
Give choices when possible – ask which tablet he or she wants to take
first!
When someone watches the person take his or her medicine, this is
called the DIRECT OBSERVATION TREATMENT SHORTCOURSE
(DOTS).
If DOTS is used for all medication, your child will stick to taking the
drugs.
My child refuses to take medicines – what can I do?
Encourage your child from an early age to be a partner in his or her
own health care. Explain why it is important that they take the ARV
medicines regularly and do not miss out on a single dose:
The ARV medicines do not last long in the blood, and the HIV will start
spreading again unless the amount of medicine in the blood is kept
strong. The virus will also get a chance to change and become
stronger if the medicine is weak.
If you are worried about the medicines, your child will also get worried.
You must find out all you can about the drugs, and ask the doctor, the
nurse or the counsellor questions so that you feel happy your child is
getting these ARVs.
Side-effects
Side-effects are most common when a person first starts taking ART.
They usually disappear after a short while.
Most of the time, side-effects such as nausea, dizziness, tiredness, or
a slight rash only last a week or so – encourage the child to persevere.
These are likely to be mild and only last a short while. Ask at the clinic
what will help with any side-effects.
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So what can you do if the child vomits up the medicine, chokes on it or
simply refuses to take it?
Calm attitude. You can make sure that taking drugs is seen as part of
the normal everyday routine for the child – like washing and eating –
and children can help keep themselves well.
No fuss should be made. Help the child to feel happy and relaxed.
You and your child with HIV - Living positively
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PART 3 - HIV stages & treatment
SOME POSSIBLE PROBLEMS WITH GIVING MEDICINES
TO CHILDREN
NOTE: if your child is vomiting a lot, complains of bad stomach pains,
develops a rash or if the eyes become yellow, you must take him or her
urgently to the clinic for help – these may be signs of serious problems
with the ARVs.
Copying others. Seeing other children take their medicine is also
helpful to a child. HIV support groups for mothers and small children,
and peer support groups for older children are most useful.
Try talking to other mothers who have to give kids medication. They
can help you with ideas about how to do this.
VOMITING AND NAUSEA
Vomiting up the drugs
Drugs that can be taken with food are less likely to be vomited up or
cause choking – but check at the clinic that this is all right. There
are drugs that need to be given on an empty stomach.
Some drugs themselves make a child feel nauseous and the child
may vomit. Ask about other medicine to help control nausea when
ARV is prescribed.
Preventing vomiting and nausea
Let the child eat before taking medication (if allowed) – as suggested
above.
Dry toast, rusks and dry crackers may help to relieve nausea.
Avoid foods that are too sweet or fatty. They will make the child
feel worse.
Avoid tea and coffee, milk and milk products (such as yoghurt)
and very salty and spicy foods until the child feels better.
Cold water or ice to suck may help the child not to feel nauseous.
Help the child to feel relaxed. Singing or deep breathing or a
game might help.
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After vomiting or choking
It is difficult to tell how much medicine has stayed down when a
child vomits or spits up the medicine after choking!
But if the vomiting occurred as soon as the child swallowed, and
you can see the pill or medicine there in the vomit, you should give
the child another dose as soon as he or she feels less nauseous.
If the vomiting occurred 1 hour after the child has swallowed, it is
usually better NOT to give him or her another dose – but speak to
the doctor or nurse about this and follow their advice.
Try the following – let the child take the tablet with ‘heavy food’ (pap,
rice, pasta, potato) or with cold drink to prevent vomiting.
If the child still cannot keep the drugs down, after 2 days, ask for
help and advice from the doctor or nurse. They may give the child
tablets against vomiting, to be taken about an hour before the
medicine is taken.
OTHER POSSIBLE PROBLEMS WITH ADHERENCE
There are other problems that can make it difficult to stick to the
Medicine Schedule.
Discuss problems like this with the doctor or nurse, or with counselling
staff at the HIV and AIDS centre or home-based care group in your
community:
Can you get refills easily when the drugs run out?
Do you have enough food and clean water at home?
Do you have transport problems when the child needs to come
to the clinic?
Do you have personal support from family and friends?
Do you need more explanations about HIV and AIDS and what
you can do for your child?
Do you need help in explaining HIV to the child?
Are you discouraged? (Find support for yourself!)
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PART 3 - HIV stages & treatment
Any stress or excitement will make the child more likely to vomit, to
choke or even to refuse to take medicine. Ask all other family
members to help you with keeping a calm and cheerful atmosphere at
these times.
5
IF MY CHILD IS VERY ILL, WHAT CAN I DO
AT THE END?
PART 4
In this year, 2007, babies and children are getting very ill from HIV and
AIDS, and many of them are dying.
We hope with all our hearts that there will soon be ART for all children,
and that all parents and care givers will have children tested and
treated early to prevent harm and suffering.
For most children, ART helps children stay healthier and happier for
longer.
But even ART will not save the lives of all children. Some children on
ART will live much longer. Some children on ART will live some time
longer. But for a few children ART may not work.
REFERRALS FOR SPECIFIC PROBLEMS
This part of the book tells you about the following:
1. Dealing with discrimination
If your child is very ill, what can you do to help him or her?
2. If a child has HIV as a result of rape or sexual assault
It is very sad, but there may come a time when you and your health
care worker, doctor or nurse, must decide that your child should not
have any more uncomfortable treatment, or drugs that make him or her
feel sick.
Instead the child should only have treatment that will make him or her
comfortable and free from pain for the last days of their life.
You have a right to help make this decision – do not let a nurse or doctor tell you what you must do. Make the decision together.
Stay with your child in hospital, or take him or her home with you if the
doctor agrees.
Show the child love and care, touch, caress your child, and speak tenderly to him or her to help him or her to die in comfort and peace, feeling your love around him or her.
3. Crisis centres and other resource organisations
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PART4 - Referrals
Doing these last things for your child can bring you great sorrow, but
they will also bring some comfort and peace to you, yourself.
DEALING WITH DISCRIMINATION
What do I do if people treat me or my child badly because of HIV?
It is wrong for anyone to treat another badly because they or a family
member is living with AIDS. This is the law – every person has the
right to respect.
But HIV and AIDS still carries stigma in many of our communities.
Many people still think it is a disgrace and a shame.
Help people understand RIGHT FROM WRONG
Unkind behaviour, pointing fingers or treating people badly because
they are HIV positive is WRONG.
It is WRONG to think or say that HIV is a punishment for bad
behaviour.
It is NOT TRUE that you can catch HIV by touching that person or
sharing a house with them.
We all need to work together to make sure that people understand the
truth about HIV and AIDS. People living with HIV should be accepted
in homes, in schools and in communities. Parents, teachers and even
other pupils should not be afraid of having a child living with HIV at the
school or day-care centre. We should be able to talk about HIV and
AIDS openly.
You will need to decide who to tell about your child, and how to tell the
child as well. You will need to prepare them for possible discrimination.
Children who are kept in the dark may become worried and anxious
and often believe they are being punished for being “bad”. Children
who know that they have HIV are ready to be partners in their own
health. They understand the cause of HIV and the treatment for it.
They are confident and do not accept bullying from others.
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If you and your child experience discrimination or bad treatment
because of AIDS, you will need to look for friends and organisations
that will help support and protect you and your family.
The organisations listed below may be able to help. For example, if
children are refused entry to a school, you, the parent, can take the
school to court. It is against the law to discriminate against children
with HIV.
For general information and support
The Treatment Action Campaign (TAC)
Tel: 021 788 3507 for your local branches.
For legal help
The AIDS Law Project
Lawyers for Human Rights
Tel: 011 717 8600
Tel: 033 342 1130
Help to stop discrimination against people with HIV
• We all need to work for fair treatment for people, including
children, living with HIV.
• We can help people understand the facts about HIV and AIDS.
• We can help people understand that it is an ILLNESS, and that
children with HIV have a right and need for special love and
care, like adults.
• We can join those who work to fulfill health rights including the
right that anti-retroviral treatment be available for all who need
it.
• When everyone who needs it can get treatment, and HIV is
seen as just another life-long (chronic) disease, then the
stigma will go away.
You and your child with HIV - Living positively
123
PART4 - Referrals
1
ARVs for all who need them
2
All who need ARVs have an equal right to them, even if they are living
with a disability, or if they are in a children’s home, or if they are in jail.
Refugees – note that the Department of Health has confirmed that
refugees who satisfy the medical criteria for starting ARV treatment are
entitled to access ARV treatment at any designated site. If you
encounter any problems, contact ARESTA on 021 630 1215.
For information or assistance for human trafficking victims, call the
toll-free number 0800 555 999.
IF A CHILD HAS HIV AS A RESULT OF
RAPE OR SEXUAL ASSAULT
Unfortunately many people’s sexual experiences may be forced or
coerced (that is persuaded). This is particularly true for young girls.
Remember that boys can also be sexually abused and can also be
infected with HIV. They need the same love, support and care as
girls do.
When the parent or care giver discovers the rape or sexual attack they
can make the child even more upset if they cry and shout! The child is
likely to become even more frightened and anxious.
After any hurt, a child needs to be helped to feel safe and
protected.
Young children
Usually rape or sexual abuse has a different meaning to a young child.
Although sexual abuse may be physically painful for a small child, he
or she does not have the same feelings or ideas about sex that an
adult does.
A young girl does not feel upset about “loss of virginity” as an adult
might.
But they often feel a sense of betrayal that an older person has not
protected them but abused them.
Do your best not to make a fuss about concerns that you may have,
especially if the child has not raised these.
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125
PART4 - Referrals
Keep calm on the outside. Show your child love and care. Hug your
child or hold your child’s hand if he or she wants this.
Help him or her to see that the incident is over and that they are
survivors.
Make sure they know that you love them and that they are safe with
you.
used to prevent HIV infection. It does not help a person who already
has HIV to take these two medicines for a short time.
Do not assume that your teenager has been “bad” to be infected
with HIV.
Do not blame them or become angry with them. She or he needs your
love and support.
Teenagers need to know that you love them and that you will
stand by them in this difficult time.
Bear in mind that persuasion and pressure on a child to have sex,
especially by someone 2 or more years older than the child, is a form
of sexual assault.
You and your child need support and help from an organisation
such as ChildLine, LifeLine, or other counsellors.
See page 129 for CRISIS LINE NUMBERS
SPECIAL ARV TREATMENT IMMEDIATELY AFTER A RAPE CAN
HELP STOP A PERSON GETTING HIV
There are medicines that help prevent HIV infection after rape
and sexual assault.
The treatment is called Post Exposure Prophylaxis (PEP).
The medication will only work if it is started before 3 days have
passed – that is within 72 hours – of an assault.
The treatment usually consists of two anti-retroviral (ARV) medicines
that need to be taken for 1 month. Only a doctor can prescribe this
medicine for a month. Sometimes a 3-day pack is given at a trauma
unit and the child has to return to the doctor for the rest of the full
one-month course.
Once the medication is started, it is important for the course to be
completed. There may be some feelings of sickness, dizziness,
headache, nausea and stomach cramps as a result of the medicines,
but usually only for a few days.
Any person, adult or child, boy or girl, who has been sexually assaulted
can get free anti-retroviral treatment for one month to help PREVENT
HIV infection, if it is within 72 hours of the assault taking place.
The parent or caregiver of children under 14 must give their consent
for the HIV test. They must be counselled first. If the parent or care
giver is not available, the medical superintendent at the hospital can
give consent.
If children are put onto a course of PEP, it is recommended that they
be told that it is to stop infection (stop “baddies getting into the blood”).
HIV and AIDS need not be mentioned if the children do not raise this
as an issue. You may however want to tell them about the risk of HIV
infection, to make sure that they stick to taking the drugs even if – as is
likely – they make them feel sick for some time.
Post
– after.
Exposure
– open to risk.
Prophylaxis – treatment to prevent infection
(pronounced: pro-fee-lacks-is).
Exposure
– an experience that “opens the way” for HIV
infection, such as sexual assault or being pricked
with a needle carrying blood with HIV.
Anti
– against.
CRISIS CENTRES & OTHER RESOURCE
Retrovirals – special viruses such as HIV.
ORGANISATIONS
The medicine will only be given to someone if he or she is tested for
HIV and is found to have a negative test result. This is because PEP is
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127
PART4 - Referrals
TEENAGERS AND HIV
3
CRISIS CENTRES AND OTHER
RESOURCE ORGANISATIONS
ChildLine
– for advice and help for abused children and
their families
– for prevention programmes and other services
ChildLine toll-free crisis telephone – 08000 55 555
ChildLine Regional Offices near you:
Eastern Cape
Free State
Gauteng
KwaZulu-Natal
Mpumalanga
North West
Western Cape
453
430
645
312
752
297
762
0441
3311
2050
0904
8444
4411
8198
the main offices – for advice in a crisis
011 728 1347
012 342 2222
(Mmabatho)
018 381 4263
(Pietermaritzburg)
033 394 4444
031 312 2323
(Richard’s Bay)
035 797 3250
(Welkom)
057 352 2212
(Cape Town)
021 461 1111
(Port Elizatbeth)
041 585 8565
(Windhoek)
[00 624] 61 23 2221
(Gaborone)
[00 267] 3911 270
TAC – Treatment Action Committee
National Office
(Cape Town)
Gauteng
Western Cape
KwaZulu-Natal
Eastern Cape
Limpopo
Mpumalanga
021
011
021
031
043
015
013
Aresta
021 630 1215
128
We are most grateful for the patience and support of the
AIDS Law Project and American Jewish World Service
who supported the first printing;
and we acknowledge with gratitude the contribution of the
Royal Netherlands Embassy to this publication,
and the South Africa Development Fund
who supported development of the text.
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364
304
722
556
755
3507
8421
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PART4 - Referrals
LIFELINE – some of
Gauteng
Pretoria
North West
KwaZulu-Natal
(Durban)
Zululand
Free State
W Cape
E Cape
Namibia
Botswana
041
051
011
031
013
018
021
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