Health emergencies are very stressful and something we hope all families can avoid. However, you never know when one will occur.
Defeat Duchenne Canada has compiled essential information you need to know in an emergency to be prepared. Please see information and resources below as adapted from our partners in the United States, Parent Project Muscular Dystrophy.
In an emergency remember to T.H.I.N.K:
Don't cut it close, take an extra dose.
- Rachael Witzke-Prendergast (Duchenne Mom), Ottawa Valley, ON
Emergency Care Guidelines
Key Points to Remember
- When you show up at an ER, hospital, or doctor’s office that is not part of your/your child’s regular care team, you are the expert!
- For children under 18 years old, try to get care in a pediatric hospital if possible.
- Call your/your child’s neuromuscular team and tell them you are going to the ER/hospital (do not depend on the ER staff to do this).
- Remember stress dosing if you/your child are on steroids.
- Take IV hydrocortisone in an emergency, during severe stress, or if you/your child can not take steroids orally.
- Keep immunization up to date, including, Pneumonia, COVID, and annual influenza (flu) vaccines.
- Always wear seat belts in the car AND chairs/wheelchairs/scooters/shower chairs.
- A fracture could be caused by a minor event.
- Know your/you child’s baselines, i.e., heart rate, blood pressure, and liver enzymes (ALT/AST- in Duchenne are higher than normal).
- Wear your medical alert bracelet, including:
- Medical condition (Duchenne muscular dystrophy)
- Medications taking (i.e., steroid dependant)
- No Succinylcholine or inhaled anesthetics
- If there is room on the ID plate, also include: Name, Birthday, and ICE medical contact info (in case of emergency)
Emergency Care Resources
Click the buttons below to read more about Duchenne muscular dystrophy emergency care protocol as created by Parent Project Muscular Dystrophy (PPMD) in the United States.
Order Emergency Care Cards
The following emergency care resources are available at no cost to Duchenne families across Canada; however, quantity limits are set to help us manage the cost associated with producing and distributing such materials. If you have additional quantity needs or to inquire about international shipping, please call us or send us an email.
While Defeat Duchenne Canada is happy to provide these resources free of charge, we always appreciate your donations to support our mission to defeat Duchenne. Click here to make a gift.
This simple yet vital card for your wallet will help you talk to doctors, nurses, and hospital administration if your child suddenly becomes sick or injured. Available in English and French.
Tearproof Information Card
The information card is larger, tearproof, and waterproof. It includes a chain for easy attachment to backpacks, scooters, strollers, wheelchairs, and other mobility devices. The card is two-sided; one emphasizes essential information for families and emergency contact information, and the other is directed towards healthcare professionals/first responders taking care of you or your child. Available in English and French.