A collision during powerchair hockey, a sudden high fever, a trip over an uneven step — just like any other family, parents of a child with Duchenne muscular dystrophy (DMD) might find themselves making an unexpected trip to the ER. But unlike other families, children with DMD have specific needs in the ER that parents should be aware of and prepared for.
Staff need to know your child has DMD
During the whirlwind of rushing a child to the ER, it can be easy to forget things — but it’s very important that sharing you’re child’s diagnosis isn’t one of them. Even if your child’s emergency doesn’t seem to be related to DMD, the attending doctor needs to be fully aware that they have Duchenne. This is because DMD both has special treatment needs and can lead to severe complications that doctors need to watch out for.
One example is fat embolism syndrome (FES), a condition in which a piece of fat clogs up a blood vessel and cuts off blood flow. Patients with DMD are at an increased risk of FES because of the fatty infiltration of the bone marrow; if they break a bone, a piece of fat can enter the bloodstream and block blood flow.
It is the duty of all doctors to ask about a patient’s medical history. However, during a critical emergency a doctor may be focused on stabilizing your child and overlook asking about their medical history.
To prepare for an emergency ahead of time, create an emergency card with information about DMD and your child that you can easily share with hospital staff. Medical apps for your phone are also available that serve the same function.
Read more about DMD testing and diagnosis
Bring your child’s medications and breathing equipment with you
Whenever you bring your child to see a new doctor who is not aware of your child’s medical and treatment history, it is important that you bring along all of your child’s medications. This is because certain drugs, such as corticosteroids, can cause complications that doctors need to watch out for.
In addition, if your child is admitted, your child’s DMD medications will probably be continued during the hospital stay. If there is a gap when your child’s medications are not taken as normal, complications may arise. This is especially important if they take steroids. Suddenly stopping steroids risks adrenal crisis, which can be life-threatening.
You should also bring any breathing equipment your child uses, like a cough assist machine or BiPAP. Bringing your regular equipment will mean not only that it’s on hand, but already correctly calibrated for your child.
Contact your regular doctors
Contact your child’s neuromuscular specialist and let them know that your child is experiencing an emergency. They may be able to speak with the emergency doctors treating your child and help ensure they receive the right care. In addition, this allows them to make changes to your child’s future treatment plan if necessary.
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