Understanding and Caring for Lungs
fact sheet for Duchenne Muscular Dystrophy (Duchenne)
The information on this fact sheet represents the recommended standard of care for Duchenne. If you
don’t understand any of the medical terms and concept, ask your healthcare providers. Take notes and ask
questions during your clinical visits.
Lung Facts
to Remember
1.Your son will need
antibiotics, extra
breathing tests, and
extra help coughing if
he has an infection.
2.Your son should
never have inhaled
anesthesia, the drug
succinylcholine or
any derivative of
succinylcholine.
3.If your son’s oxygen
level drops when he
is sick or injured, your
doctor must be very
careful giving him
oxygen. 4.Your son’s lung function
should be checked
before surgery. Meeting the complex needs of a person with Duchenne involves the whole family
and may sometimes be a challenge. Finding resources, knowing what to expect, and
planning for the future can help. Parent Project Muscular Dystrophy is your “go-to”
resource for the latest information on caring for the person in your life affected by
Duchenne.*
WHAT TO EXPECT
Duchenne affects your son’s muscles—including those important for breathing. Your
son’s lung muscles will get weaker as he grows older. Eventually, he will have trouble
breathing (hypoventilation).
Your son will probably not have trouble breathing and coughing while he is still
walking. After he stops walking, he may have trouble coughing. When he becomes a
teenager, he will need help to be able to cough and may need to use a cough assist
machine. As a teenager, he will start to have trouble breathing at night (nocturnal
hypoventilation) and may need to use a BiPAP or CPAP machine to help him take a
deep breath. When he is an older teenager or young adult, it will be hard for him to
breathe on his own (hypoventilation) and he will need to use a BiPAP or CPAP, or an
external ventilation machine to help him breathe. In addition, your son may need
extra help when he has a chest infection or surgery. He may temporarily need to use
CoughAssist or a breathing machine (ventilator).
If your son has one or more of the following symptoms, he may have trouble
breathing. Take him to a doctor that specializes in caring for the lungs
(pulmonologist) if you see any of these symptoms.
»» He seems very tired all of the time.
»» He is short of breath, or seems unable to catch his breath.
»» He has headaches in the morning or throughout the day.
»» He is often sleepy for no reason.
»» He has difficulty paying attention.
»» He has trouble sleeping, wakes up a lot during the night, has trouble waking up
in the morning, or often has nightmares.
»» As he wakes up, he tries to catch his breath.
»» As he wakes up, he can feel his heart pounding.
For more information about what you can do to care for your son’s lungs, see the
back of this sheet.
ParentProjectMD.org
*The published care recommendations focus on Duchenne. Most of the care recommendations also apply to Becker muscular
dystrophy, but at older ages. Most, but not all, people with Duchenne are males—but the care recommendations apply to both
males and females with Duchenne.
What you can do to
care for your child’s lungs
fact sheet for Duchenne Muscular Dystrophy (Duchenne)
This fact sheet shows recommended standard care. Talk to your son’s doctor about care options that go
above standard care.
while he is walking
»» At least once a year, take him to a doctor to have a breathing test called forced
vital capacity (FVC).
»» Keep a copy of his latest breathing tests to show the other healthcare
professionals who take care of him.
»» Make sure he gets all of the recommended childhood shots.
»» Take him to get a flu shot every year, starting when he is 6 months old.
»» When he is 2 years old, take him to get a pneumonia shot.
»» If he gets sick, especially with a cold or chest infection, make sure he receives
antibiotics, extra breathing tests, and extra help coughing.
»» If he needs surgery or goes to the emergency room, tell the doctors not to give
him inhaled anesthesia or succinylcholine. They also need to be very careful
giving him oxygen.
when he is in a wheelchair
»» Make sure your son has breathing tests to measure how well he is coughing and
breathing at least every six months, before he has surgery, and when he has a
chest infection. »» Make sure your healthcare team includes a doctor and a therapist who know
how to take care of people with weak breathing muscles.
»» Talk to your doctor about how you can help your son cough and breathe more
easily.
»» Keep a copy of his latest breathing tests to show the other healthcare
professionals who take care of him.
»» Make sure he gets a flu and pneumonia shot.
Additional
Resources
For more information
about caring for
Duchenne, visit
ParentProjectMD.org/
Care.
healthcare team
Duchenne requires
coordinated care. Your
healthcare team may
include many different
professionals, including
those listed below. One
doctor should coordinate
your son’s overall care.
»» neuromuscular
(nerves and muscles)
»» physical therapy
(muscles and
stretching)
»» cardiologist (heart)
»» rehabilitation (nerve,
muscles, bone, brain)
»» gastrointestinal
(throat and stomach)
»» nutritionist (diet/
nutrition) »» psychologist (social
and mental health)
»» orthopedic surgeon
(bones)
»» respiratory (lungs)
You are also a critical
member of your son’s
healthcare team. You
are the best person to
tell your doctors how
your son is doing. As
your son becomes older,
he should become more
involved in talking to
his healthcare team.
»» If he uses a breathing machine at night, he may now also need it in the daytime. Make sure your son knows about using cough assist and breathing machines
before he has surgery.
»» If he gets sick, especially if he has a cold or chest infection, make sure he
receives antibiotics, breathing tests, and extra help coughing. He may also need
to use a breathing machine (ventilator) for a while. »» If he needs surgery or goes to the emergency room, tell the doctors not to give
him inhaled anesthesia or succinylcholine. They also need to be very careful
giving him oxygen. ParentProjectMD.org