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BREATHING PROBLEMS
If you/your child is having problems with breathing (shortness of breath, difficulty breathing, etc.), remember:
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).
Risk of 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.
Learn more about the symptoms of FES & how to care for it.
DENTAL PROCEDURES
If you/your child is having a dental procedure, remember:
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.
PAIN
If you/your child is having severe pain, remember:
SURGERY
If you/your child is scheduled for surgery, or having emergency surgery, remember:
Call your neuromuscular specialist and let them know you are going to the emergency room and why
Go to a hospital emergency room; bring the PJ Nicholoff Steroid Protocol (download)
Request substitute IV corticosteroid until oral medications are tolerated (6 mg of deflazacort equals 5 mg of prednisone)
Remind clinicians that high liver enzymes (AST/ALT) are normal for people with Duchenne
Learn more about steroids
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