Children with DMD experience the normal childhood illnesses and accidents. But, because their muscles are weaker, some things are more serious for them than other children.

What should we do in an emergency?

In an emergency, call 999. Children with DMD need expert medical treatment in an emergency. It’s dangerous to treat them yourself or rely on information on the internet.

What should you tell the emergency services?

You need to tell the emergency services that your child has DMD and, therefore, requires special treatment and:

  • Show them the DMD Alert Card – especially the information about anaesthetics
  • Tell them about your child’s steroids and other medication

Depending on the emergency, click the link below to show to the doctor:

How to prepare for emergencies:

The DMD Alert Card has detailed advice about DMD for ambulance officers, nurses and doctors so they can give your child the right treatment during an emergency.

You can download an electronic copy at: http://bit.ly/alertcard

You should prepare a documented emergency plan with your GP or neuromuscular consultant. It should cover information about medication your child is taking, any medical issues specific to your child and the contact details for their neuromuscular consultant.

In particular you need to take urgent action and doctors need to consult the DMD Standards of Care if your child:

Misses a steroid dose Give them steroids as soon as possible and seek medical advice.
Vomits and cannot take a steroid dose

Take them to a hospital emergency department and tell the doctors that the substitute, corticosteroid, by intravenous route is required until oral steroids can be taken again.

Conversion:

• 6mg defl azacort = 5mg prednisone = 20mg hydrocortisone

• Corticosteroid dose may have to be increased in an acute illness. Ask your consultant for advice

Develops a chest infection Must be treated seriously and early with antibiotics and physiotherapy.
Breaks a bone

If they break a bone, they need to go to hospital:

• Refer the doctors to the Standards of Care guide

• Avoid prolonged immobilisation whenever possible. So, internal fixation is preferable to casting as it helps to preserve muscle and speeds a return to walking

• Consider alternatives (e.g. surgery), if clinically indicated

You should also contact:

• Their neuromuscular specialist

• Their physiotherapist to ensure close follow-up

Needs an anaesthetic

Because DMD affects the breathing muscles, doctors need to make special arrangements when they administer anaesthetics:

• Intravenous only

• Local anaesthetics are safe (usually safer than inhaled anaesthetics)

• Succinylcholine must never be given

• Inhaled anaesthetics should be avoided

• Neuromuscular blocking drugs should be avoided

• Oxygen needs to be administered carefully