Emergency Care Considerations
If your son suddenly becomes sick or injured, it is extremely important that you have the following information with you when talking to doctors, nurses, and hospital administration.
There are two easy way you can keep this information with you at all times:
- Smartphone App: If you have an Apple or Andoird smartphone, you can download the Parent Project Muscular Dystrophy App and access this emergency care information right from your phone.
- Business Card: View our Support Materials page to obtain a copy of our Emergency Info Card and keep this information in your wallet.
General Recommendations and Precautions
- Avoid inhaled anesthesia
- IV anesthesia is considered to be safe (with close monitoring)
- People with Duchenne should NOT receive succinylcholine
- Local anesthetics & Nitrous Oxide are safe for minor dental procedures
- See a complete list of Safe and Unsafe Anesthetics.
- Risk: Respiratory failure. Please only give oxygen with close monitoring of CO2 levels; breathing may need to be supported (with BiPAP, for example)
- If oxygen levels are low, assisted coughing (with cough assist machine or Ambu bag) may help
- Take your equipment (cough assist, BiPAP, etc.) with you to the hospital/emergency room (ER); alert your neuromuscular team that you are going to the ER/hospital
- Learn more about Pulmonary Care for Duchenne
Vomiting and/or Unable to Take Daily Corticosteroids for 24 Hours
- Dentistry generally can, and should, be performed with the minimal amount of anesthesia possible while providing the patient maximal physical and emotional comfort.
- Local anesthetics, nitrous oxide, and an oxygen “wash out” are safe for most patients with Duchenne, especially patients who are ambulatory with normal pulmonary function (normal breathing).
- Patients with Duchenne who have pulmonary dysfunction (abnormal breathing) should consider receiving dental care requiring general anesthesia in a hospital or surgery center staffed with an anesthesiologist, and equipped to monitor intra-operative respiratory functioning and to manage potential respiratory and cardiac emergencies.
- Learn more about dental care considerations in Duchenne.
- If ambulatory: Ask if internal fixation/surgery rather than casting, may be possible. Surgery may help preserve walking.
- If your child has had a fall or a leg injury, and has rapid onset shortness of breath/difficulty breathing, changes in alertness (confusion, agitation, disorientation) this is an emergency; go immediately to the ER and alert staff that symptoms could be due to Fat Embolism Syndrome (FES).
Fat Embolism Syndrome (FES) Following a Fall /Fracture /Trauma
- Extremely rare
- Results when fat particles enter the blood circulation, causing decreased oxygenation to the heart and/or brain
- Usually follow long bone/pelvic fractures or trauma; very rarely has occurred after orthopedic surgery
- Should be considered if the child develops shortness of breath or neurological symptoms after a fall/fracture/trauma
- See the symptoms of FES & how to care for it.
Surgery & Anesthesia
Parent Project Muscular Dystrophy App
Support Materials: Emergency Care Card