NOVO NORDISK
CUSTOMER CARE CENTRE
0845 600 5055*
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REPORTING OF SIDE EFFECTS
If your child experiences any side effects, talk to your doctor,
pharmacist or nurse.
This includes any possible side effects not listed in the packaging
leaflet. You can also report side effects directly via the Yellow Card
Scheme at www.mhra.gov.uk/yellowcard
By reporting side effects you can help provide more information
on the safety of this medicine.
Changing Diabetes® and the Apis bull logo are trademarks of Novo Nordisk A/S. UK/NR/1112/0051b(1)a. Date of preparation: January 2016
Any
questions
on type 1
diabetes?
Frequent questions
and common terms
2
With you all the way is a paediatric support programme
created by Novo Nordisk, providing educational materials
for healthcare professionals, children and young people
with type 1 diabetes, and their parents.
This material has been reviewed by a panel of experts:
■ Lead Diabetes Specialist Nurse – Nicola Lewis, UK
■ Paediatric Endocrinologist – Dr. Nandu Thalange, UK
Changing Diabetes® is a global commitment by Novo Nordisk
for improving conditions for the millions of people who live
with diabetes around the world today, and for those who
are at risk of developing diabetes tomorrow.
2
This information is not designed to replace
the advice of a healthcare professional.
Please consult your diabetes care team if
you have any questions or concerns about
your child’s diabetes.
Frequently asked questions
SUDE IGDAR
Sude has type 1 diabetes
Here are some of the most common questions asked by parents
of children with diabetes:
WHY HAS MY CHILD GOT TYPE 1 DIABETES?
Your child has been diagnosed with type 1 diabetes, an
autoimmune disease. An autoimmune disease is when the body’s
immune system attacks and destroys healthy body tissue by
mistake. In type 1 diabetes, this means that the immune system is
destroying the beta cells that make insulin in the pancreas. Your
child is therefore unable to produce enough insulin to keep blood
glucose levels normal. The pancreas has many other functions in
the body which are not affected by type 1 diabetes.
Unfortunately, type 1 diabetes is not preventable. However,
research is under way to investigate whether the immune system
can be controlled to switch off the immune attack. For the time
being, there is nothing that you could have done to prevent your
child from developing type 1 diabetes.
A person’s risk of developing type 1 diabetes depends on the
particular genetic make-up of their immune system. It is believed
that the trigger for developing type 1 diabetes is most likely a viral
infection in early life – the immune system ‘tags’ the beta cells of
the pancreas as ‘virus-infected’ and starts destroying them. When
80–90% of the beta cells have been destroyed, diabetes develops.
Getting glucose levels under control as soon as possible after
diagnosis may help the surviving beta cells recover some function.
This can lead to a period of very stable blood glucose levels, which
diabetes specialists call the “honeymoon” or remission phase.
3
P.J. PIMPINELLI
P.J. has type 1 diabetes
WILL MY OTHER CHILDREN ALSO GET
TYPE 1 DIABETES?
If one of your children has type 1 diabetes,
you may worry that other siblings will
be affected too. Close family members
have similar genetic make-up. So, while
type 1 diabetes is not hereditary, family
members are genetically more at risk of
developing autoimmune diseases, such as
type 1 diabetes.
There are a number of hospitals in the UK
and worldwide conducting research which
can identify whether you or another family
member is at risk – if you are interested
in knowing more, ask your diabetes care
team. It is important to know, however,
that the risk is small – around 6–10% in
close family members.
IS THERE A CURE FOR TYPE 1
DIABETES?
Currently, there is no cure for type 1
diabetes. However, it can be managed
successfully with insulin, given either
by injections or an insulin pump, in
combination with a healthy, balanced
diet and regular physical activity.
4
WHAT ABOUT THE FUTURE OF
DIABETES MANAGEMENT?
In some countries, insulin inhalers or mouth
sprays are available, but these are not
available in Europe at the moment. Insulin
tablets are also in development.
Pancreas transplants or, more recently, beta
cell transplants have been successfully used
in adults with type 1 diabetes. However, the
effect of the transplant is usually temporary
and powerful anti-rejection drugs – with
major side-effects – are needed to stop the
immune system destroying the transplant.
There is also a severe shortage of organs and
tissue for transplantation.
To get around this, scientists have been
working to genetically engineer insulin
producing cells in the lab, using special tissue
called stem cells. Research is underway to
see if the immune process can be controlled,
either with drugs or by reprogramming
the immune system, not to destroy the
insulin-producing beta cells.
WILL MY CHILD ALWAYS HAVE TO
TAKE INSULIN?
Insulin is essential for life – you can’t do
without it. For now, this means, your child
will need to have insulin every day. This is
because their pancreas cannot produce the
insulin needed to control glucose levels.
The insulin device, whether it is a pen for
injections or a pump, will provide them with
the insulin they need.
WHAT ARE THE GOALS FOR MY
CHILD’S BLOOD GLUCOSE LEVELS?
Your child’s blood glucose levels should be
tested at least five times per day – research
shows that 7–10 tests a day are associated
with better glucose control. Ideally they
should be aiming to achieve the following
long-term blood glucose targets, although
your diabetes care team may suggest
different targets to suit individual situations.
High or low blood glucose affects
concentration, well-being and school
achievement, as well as increasing the risk
of long-term diabetes complications. It is
therefore crucial to get blood glucose levels
as close to normal (4–7 mmol/l) as possible.
These targets are difficult to achieve and
no-one has perfect control all the time
– particularly when they first start using
insulin. There can be conflict between
children and their parents or other carers
about blood glucose targets – if you struggle
to achieve target levels, your diabetes care
team will be able to give you support.
Your child will have a blood glucose meter
and testing strips which they can use to
continually test their blood glucose levels.
■ On
waking levels should be between
4–7 mmol/l
■ Before a meal levels should be between
4–7 mmol/l
■ After meals levels should be between
5–9 mmol/l
■ For older teenagers, when driving, levels should be at least 5 mmol/l
■ Before sport, or other physical activity, aim for a glucose level of around 7–10 mmol/l
5
WHAT IS CONTINUOUS GLUCOSE
MONITORING?
Some children – especially very young
children or those experiencing unpredictable
hypoglycaemia (or hypos) – may be offered
a continuous glucose monitor (CGM).
These measure blood glucose under the
skin, continually, and alarm if the glucose
level is out of range. They sense glucose
through a tiny electrode inserted through
the skin. The electrode is connected to a
small transmitter which sends the results
to a reader, or mobile phone. The electrode
is worn for 5–7 days, or more. These
monitors require regular blood glucose
checks (usually twice a day) to make sure
they are reading correctly.
Other systems for measuring glucose
without the need for regular blood checks
are available for people to buy, but are not
currently available through the NHS.
Whichever method you are using to check
glucose levels, it is important that you, your
child (if they are old enough) and other
carers know how to use it and how to take
the right steps to correct high or low blood
glucose. Your diabetes care team will help
you to understand everything you need
to know.
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HOW DO I KNOW WHEN MY CHILD’S
BLOOD GLUCOSE LEVEL IS TOO LOW?
If your child’s blood glucose level is low, they
may be experiencing a hypo. Every child is
different but the most common signs and
symptoms are:
■Hunger
■Nervousness
■Shakiness
■Sweating
■ Lip
tingling
or light–headedness
■Sleepiness
■ Behaving out of character
■Confusion
■ In extreme cases severe hypoglycaemia
with coma or seizures can occur
■ Dizziness
At first it may be hard to recognise signs,
but you and your family will get to know
them over time. If you are unsure, test their
blood glucose.
People without diabetes start to get these
symptoms when their blood glucose is below
3.1 mmol/l. Many children with diabetes do
not report any hypo symptoms above this
level, but if you find the blood glucose level
is 3.9 mmol/l or lower, you should regard
this as a hypo, and take appropriate action.
This is important, as the blood glucose level
may still be dropping, and it is important to
avoid severe hypoglycaemia.
If you are using CGM, the glucose level
shown will usually be lower than on a blood
glucose check, and will take longer to go
back to normal. If your child has a hypo
alarm on their CGM, you must do a blood
glucose check to find out what the actual
level is, and be guided by the blood glucose
level rather than the CGM.
You should encourage your child to know
their own symptoms of low blood glucose,
and encourage your child to use simple
words to describe how they are feeling,
i.e. ‘shaky’ or ‘fuzzy’.
SHOULD BLOOD GLUCOSE LEVELS
BE KEPT HIGH TO AVOID HYPOS?
No. Although hypos may sometimes
be scary, they are manageable. A small
number of children experience severe
hypos. If your child has a severe hypo,
speak to your diabetes care team. There
are a variety of ways to reduce the risk
of severe hypos happening in the future.
It is harmful to your child for blood
glucose levels to be too high. High blood
glucose in your system means you do
not have enough insulin. This can lead
to the acute, life-threatening condition,
diabetic ketoacidosis, as well as leading
to premature complications of diabetes in
the long-run. When glucose levels are out
of range – either high, or low – it affects
behaviour, mood, concentration and
school achievement.
When there is a shortage of insulin, the
body cannot use all the glucose available
and instead breaks down fat for energy,
producing chemicals called ketones.
In high levels, ketones are poisonous,
and cause diabetic ketoacidosis (DKA).
This is an emergency, and needs urgent
medical attention.
HOW DO I KNOW WHEN MY CHILD’S
BLOOD GLUCOSE LEVEL IS TOO HIGH?
Glucose is too high if it is above 7 mmol/l
before a meal and above 9 mmol/l between
2–3 hours after a meal – this is known
as hyperglycaemia. Symptoms of
hyperglycaemia include:
■ Passing more urine than normal or
bed-wetting
■ Being thirsty
■ Being very tired, or being unable to
keep up with other children doing
normal activities
■ Having headaches
■ Poor behaviour and concentration
If your child has any of these symptoms, and
their blood glucose is very high, or they are
vomiting whatever the glucose level, it is
important to check their blood ketones using
special ketone testing strips and a meter.
Blood ketone levels above 1.0 are abnormally
high and you would know to contact your
diabetes care team right away. If above 3.0,
ketoacidosis is possible.
If your child has high blood glucose levels
regularly then they may experience less
symptoms, as their body can get used to
‘running high’. By checking blood glucose
regularly you will be aware of their levels and
will be able to seek advice to reduce them.
ALEX SILVERBERG
Alex has type 1 diabetes
7
ANA MIRIAM MÈNDEZ VALDEZ
Ana has type 1 diabetes
8
DOES HAVING DIABETES MEAN MY
CHILDREN CAN’T EAT SWEET/SUGARY
FOODS?
Having diabetes doesn’t mean that your
child can’t eat any sweets as treats, but
you will need to help them to learn how
to balance food intake with insulin doses
and exercise. When you learn how your
child’s body responds to eating and taking
insulin they will be able to have sweets in
moderation, along with the appropriate
insulin and regular activity.
CAN WE STILL GO ON HOLIDAY
ABROAD?
Having diabetes will not prevent you from
going away on holiday, but it will require
some extra planning. For instance, you will
need to make sure you have enough insulin
for your stay and that your accommodation
has a fridge to store it in (if you are travelling
to a hot climate). You should also take out the
correct type of travel insurance to cover your
child’s care.
You will need to carry a letter with you –
When sweets are offered, your child should
stating the need for your child to carry insulin
explain that they have diabetes and know that with them at all times when flying. You can
they can either eat a small amount and take
get this from your healthcare team.
the rest home, or take them all home.
It is advisable for your child to carry some
form of identification stating that they have
CAN MY CHILD STILL DO SPORTS?
type 1 diabetes and require insulin – a card, a
Yes. At least 60 minutes per day of exercise is
bracelet or medical ID in their smartphone are
recommended for all children (whether they
suitable. Make sure you have contact details
have diabetes or not). Exercise helps keep
(email and phone/text numbers) for your
blood glucose levels stable, with lower insulin
diabetes care team just in case you need help
doses. You should know that exercise reduces
while you are away.
blood glucose levels, so your child may need
a snack before exercise and/or to reduce
their insulin dose for the meal before, and
sometimes after, exercise to prevent hypos.
ARE THERE ANY SPECIAL PRECAUTIONS I
SHOULD TAKE WHEN MY CHILD IS ILL?
It is vital that children continue to take insulin
(though they will need to adjust the dose
according to carbohydrate intake and blood
glucose levels), to eat and drink, and to check
blood glucose regularly. If your child has high
blood glucose levels, or is vomiting regardless
of glucose levels, it is necessary to check for
ketones using blood ketone testing strips and
a meter. High levels of ketones (above
1.0 mmol/l) indicate that they may be at
risk of diabetic ketoacidosis (DKA). This is a
medical emergency.
WHAT ABOUT WORK?
There are very few jobs that children with
diabetes will not be able to do when they
grow up; however, there are some jobs that
have restrictions preventing people with
type 1 diabetes from applying. If a job involves
driving, it is vital that an employer and the
DVLA are aware of a person’s diabetes.
It may be harder for a person with diabetes to
get certain types of insurance. Your diabetes
care team can give you more information
about this.
Your diabetes care team will guide you on
how to manage your child’s diabetes in
relation with their sport.
9
SHOULD I BE CONCERNED ABOUT
LONG-TERM COMPLICATIONS?
At least four times a year, your child’s long-term diabetes control
will be checked by a blood test which measures HbA1c levels, or
the amount of glucose that is being carried by the red blood cells
in the body. The HbA1c levels indicate the blood glucose levels for
the previous two or three months. Good blood glucose control
– therefore good HbA1c levels – are vital in preventing long-term
complications. Note that there are certain blood diseases such as
sickle cell anaemia which mean that HbA1c is not a suitable test.
Your diabetes care team will explain what alternative options
there are for monitoring long-term control.
A HbA1c target level of 48 mmol/mol (6.5%) or lower has been
scientifically proven to greatly reduce the risk of long-term
complications. In certain circumstances your child may be given
a higher HbA1c target but the lowest risk of long-term problems
is seen with near-normal glucose levels, hence aiming for
48 mmol/mol (6.5%) for most children.
In order to detect early signs of long-term complications of
diabetes, your child will have regular routine check-ups, including
height, weight, and blood pressure. They will have an annual test
of thyroid function. From age 12, they will be offered an annual
eye examination and blood and urine tests for kidney function,
cholesterol levels, etc.
10
LARS MYHRER
Lars has type 1 diabetes
Diabetes
Dictionary
When you find out your child has
diabetes, there will be a lot of
information to take in.
Over the next pages, you will find
a guide to some of the most
common terms used when talking
about diabetes.
11
TRINITY ALFARO
Trinity has type 1 diabetes
12
AUTOIMMUNE DISEASE
A disorder in which the body attacks its own
cells. In type 1 diabetes, the body mistakenly
damages beta cells in the pancreas that
make insulin, resulting in high blood glucose.
CARBOHYDRATE
Type of food that provides the body with
energy. Carbohydrates are mainly sugars and
starches that are broken down into glucose –
a simple sugar that the body’s cells use as fuel.
BASAL INSULIN
Basal (or background) insulin keeps blood
glucose levels under control between meals
and overnight. Depending on the kind of
insulin your child has, the insulin may be
mixed with another chemical to slow down
its absorption or, more commonly, the
structure has been chemically altered.
See ‘long-acting insulin analogue’.
DIABETIC KETOACIDOSIS (DKA)
A serious, life-threatening condition. If the
body is unable to use glucose for energy
because of a lack of insulin, it starts to
burn fat as fuel instead. This leads to the
production of ketones and a build-up
of acids. Above a certain level, these
are poisonous. Nausea, vomiting and
abdominal pain are typical symptoms.
Checking ketones (preferably in the blood)
can help to distinguish DKA from other
causes of vomiting such as gastroenteritis.
If blood ketone levels are above 1 seek
help immediately.
BETA CELLS
Cells in the pancreas that make insulin.
BLOOD GLUCOSE
The concentration of glucose – the body’s
main source of energy – in the blood.
BOLUS INSULIN
To keep blood glucose levels under control
after eating, bolus insulin is taken with
meals. Bolus insulin is known as short-acting
insulin or a rapid-acting analogue, as it has
to act very quickly after food is eaten.
See ‘rapid-acting analogue’ and ‘shortacting insulin’.
FASTING BLOOD GLUCOSE (FBG)
This is the blood glucose concentration
after not eating anything for at least eight
hours. This test is a good measure of the
effectiveness of your insulin overnight
(whether by injection or pump) as it is not
affected by food or exercise.
GLUCAGON
Glucagon is an emergency treatment for
severe hypoglycaemia. It occurs naturally
in the body, and it raises blood glucose
levels by releasing stored glucose (glycogen)
from the liver. Intramuscular glucagon may
be given by injection into the leg when a
child has a severe hypo. You will receive a
glucagon kit, and your diabetes care team
will show you when and how to use it.
HbA1c
The formal medical name for HbA1c is
glycated haemoglobin – the amount of
glucose carried by haemoglobin. This reflects
levels of glucose in the bloodstream over
the previous 2–3 months. It has been shown
scientifically to be a powerful predictor of
long-term diabetes complications. Good
HbA1c levels are vital to prevent long-term
complications from developing. A HbA1c
target level of 48 mmol/mol (6.5%) or lower
is ideal for minimising the risk of long-term
complications.
13
HORMONE
A hormone is a chemical released by glands
within the body (like the insulin-producing
beta cells in the pancreas), to help it control
vital body functions. Insulin is a hormone
which controls glucose levels in the
bloodstream and certain tissues like muscle
and fat.
HYPERGLYCAEMIA (OR A ‘HYPER’) –
HIGH BLOOD GLUCOSE
This term is used for high blood glucose
levels. This occurs when there is insufficient
insulin to maintain normal glucose levels.
Hyperglycaemia happens when blood
glucose levels are too high – above 7 mmol/l
before a meal and above 9 mmol/l between
2–3 hours after a meal.
HYPOGLYCAEMIA (OR A ‘HYPO’) –
LOW BLOOD GLUCOSE
This term is used for low blood glucose levels.
Hypos result from an imbalance between
insulin, food and exercise. For example,
they can be triggered by forgetting to
reduce insulin before strenuous exercise, or
inadequate food or snack intake. A blood
glucose level of 3.9 mmol/l or lower is
considered a hypo.
14
INSULIN PUMP
A device that delivers insulin via a small tube
and is inserted under the skin in the abdomen
and delivers a steady flow of rapid-acting
insulin continuously. Patients on insulin
pumps only have one kind of insulin in their
pump – bolus insulin – as the pump delivers
a small amount of insulin all the time, with
extra being needed for meals and snacks.
KETONES
Chemicals that are produced when there is
a shortage of insulin in the blood so that the
body has to break down body fat for energy.
LONG-ACTING INSULIN ANALOGUE
About half the insulin our bodies require is
to control blood glucose levels, even when
we are not eating. We call this basal insulin.
Long-acting insulin analogues are genetically
modified forms of insulin designed to be
more predictable and stable. They are
injected once or twice a day and keep
glucose levels normal between meals and
overnight. It is best to inject these at the
same time every day.
MEDIUM/LONG-ACTING HUMAN
INSULIN
This type of insulin, often called Neutral
Protamine Hagedorn (NPH), lasts around
20–24 hours and is usually given twice a day.
It has a peak action of up to 12 hours after
injection. See ‘basal insulin’.
MILLIMOLES PER MOLE (MMOL/MOL)
AND MILLIMOLES PER LITRE (MMOL/L)
The units of measurement for HbA1c, blood
glucose and ketones.
ORAL ANTIDIABETIC DRUGS (OADs)
Oral medications that help to control blood
glucose (e.g. metformin). They are used for
type 2 diabetes, sometimes in combination
with insulin. Some OADs have the potential
to be useful for type 1 diabetes, and much
research is ongoing in this area.
PANCREAS
An organ in the body that stretches across
the back of the abdomen behind the
stomach. The pancreas is where insulin and
digestive enzymes are made.
POST-PRANDIAL BLOOD GLUCOSE (PPG)
The level of blood glucose measured 2–3
hours after eating.
NOVA HOLMBERG
Nova has type 1 diabetes
15
VINCENT REVO LONDA
Vincent has type 1 diabetes
PRE-FILLED INSULIN PEN
This type of pen comes with the insulin
already in it. These pens are disposed of
when the insulin has expired (30–56 days,
depending on the type of insulin), or all the
insulin has been used.
SHORT-ACTING INSULIN
This is also sometimes called ‘regular’ or
‘neutral’ insulin and is usually taken 15–45
minutes before a meal and lasts for around
6–8 hours, with peak action at around 2–4
hours after injection. See ‘bolus insulin’.
PRE-MIXED INSULIN
A mixture of a rapid-acting analogue or
short-acting insulin and a long-acting
analogue or medium/long-acting insulin
with a peak action of 2–8 hours, usually
injected before breakfast and evening
meal. This kind of insulin is no longer
recommended for general use in children.
TYPE 1 DIABETES
This type of diabetes occurs when the body
produces little or no insulin at all. It is an
autoimmune disorder in which the body
attacks the beta cells that make insulin in
the pancreas. Type 1 diabetes is by far the
most common form of diabetes in children.
Type 1 diabetes used to be termed ‘juvenile
onset diabetes’.
RAPID-ACTING ANALOGUE
This type of insulin is fast-acting, with a
peak action of approximately 1–2 hours
after injection, and lasts for around 4
hours. It is typically given around mealtimes
to help manage blood glucose levels.
See ‘bolus insulin’.
DURABLE INSULIN PENS
This type of pen requires cartridges to be
inserted. When all the doses are used, or
the cartridge has expired, the cartridge
is replaced.
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TYPE 2 DIABETES
This kind of diabetes accounts for over
90% of adults with diabetes. In contrast
to type 1 diabetes, lifestyle factors (such
as being overweight) are usually a factor.
This type of diabetes occurs when the body
is resistant to insulin and/or not enough
insulin is being made by the beta cells to
keep glucose levels normal. Children can
develop type 2 diabetes but it is still rare in
the UK. Type 2 diabetes used to be termed
‘non-insulin-dependent diabetes’.
Key things you need to learn/do following your child’s diagnosis
of type 1 diabetes:
Please ensure that you feel confident in the following aspects of your child’s diabetes and have informed the relevant people of your child’s
diagnosis. If you have any questions or concerns, speak to a member of your diabetes care team.
ADMINISTERING INSULIN
4
BLOOD GLUCOSE MONITORING
4
Ensure you feel confident injecting
your child with insulin, or programming
their insulin pump, and know what dose
is required and when.
Ensure you feel confident using the blood
glucose meter and know when to test
and what the results mean.
MANAGING LOW BLOOD GLUCOSE
CONTACTS
You will need to ensure that you
have a supply of high glycaemic index
(rapid-acting) snacks or drinks with
you, wherever you go, to help manage
episodes of low blood glucose (hypos).
A ‘hypo box’ may be useful.
4
If you have a CGM, you will not have to
do such frequent testing, but it is still
necessary, particularly for managing low
glucose levels.
Ensure you have email, phone and text
numbers for the diabetes team.
Know who to contact in an emergency
– you (or your child) should make sure
to have this information with you at
all times.
4
MEAL PLANNING
4
Ensure you understand how
to balance food intake with
insulin doses and understand
carbohydrate counting.
WHO TO TELL
4
Ensure you inform anyone involved
in your child’s care about their diagnosis
of type 1 diabetes:
• Nursery assistants
• Other caregivers
• School teachers
• Other members of your family
Ensure your child carries identification,
such as a card or bracelet, that informs
people that they have diabetes.
17
Important information
First appointment
Date:
Time:
Doctor’s name:
Location:
Contacts
Doctor:
Nurse:
Tel:
Tel:
Insulin regimen
Insulin/device:
18
Timing of doses:
This information was developed by Novo Nordisk, a global healthcare
company with more than 90 years of innovation and leadership in
diabetes care. This heritage has given us experience and capabilities
that also enable us to help people defeat other serious chronic
conditions: haemophilia, growth disorders and obesity.
Headquartered in Denmark, Novo Nordisk employs approximately
40,300 people in 75 countries and markets its products in more
than 180 countries.
For more information about Novo Nordisk, please visit
www.novonordisk.co.uk
Other materials from the With you all the way campaign can be
accessed via www.with-you-all-the-way.co.uk
This information is not designed to replace
the advice of a healthcare professional.
Please consult your diabetes care team if
you have any questions or concerns about
your child’s diabetes.
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