Emergency information – for parents of boys with Duchenne MD
(Parent Project Muscular Dystrophy)
Date of birth: ______________________________________________________
Emergency contact: ______________________________________________
GP name: ______________________________________________________
GP contact: ____________________________________________________
If presenting at an emergency department, contact the neurology/neuromuscular team and respiratory team at: ________________________________________________________________
as soon as possible on: _____________________________________________________________
- 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 or difficulty breathing and 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).
- 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 Amby 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 ER/hospital.
GENERAL RECOMMENDATIONS AND PRECAUTIONS:
- Keep immunisations up to date and get influenza vaccine annually.
- People taking daily, long-term steroids should avoid live vaccines when possible.
- Always wear seat belts – in the car AND on the wheelchair/scooter.
- Avoid inhaled anaesthesia.
- IV anaesthesia is considered to be safe (with close monitoring).
- People with Duchenne should NOT receive succinylcholine.
- Local anaesthetics and nitrous oxide are safe for minor dental procedures.
IF VOMITING AND/OR UNABLE TO TAKE DAILY CORTICOSTEROIDS FOR 24 HOURS:
- Go to a hospital emergency room; bring the PJ Nicholoff Steroid Protocol (ParentProjectMD.org/PJ).
- Request substitute IV corticosteroid until oral medications are tolerated (6 mg of deflazacort equals 5 mg of prednisone).
- Remind clinicals that high liver enzymes (AST/ALT) are normal for people with Duchenne MD.