Steroids for Duchenne muscular dystrophy
This information is for tamariki (children) who are on corticosteroid medicine (‘steroids’) for Duchenne muscular dystrophy. Boys with Duchenne muscular dystrophy receive high dose steroids long term.
Steroid medicines include prednisone, prednisolone and deflazacort.
Natural steroid
The body produces a small amount of natural steroid (cortisol) every day, from 2 small glands called the adrenal glands. In times of physiological stress, such as illness or a serious accident, the adrenal glands produce an increased amount of natural steroid to help the body cope.
Steroid medicine
When someone is taking steroid medicine, this replaces the natural steroid, and the adrenal glands stop their steroid production. For this reason, it's important your child does not stop taking their prescribed steroid suddenly, particularly when sick. They could become very unwell with a condition known as an adrenal crisis. Symptoms include:
feeling weak
dizziness
vomiting and diarrhoea
muscle or tummy pains
seeming generally unwell
Your child should not stop taking their steroids, particularly when unwell.
When a child cannot take oral steroids
If your child cannot take oral steroids, for example, because of vomiting, see a doctor urgently for replacement steroids. Your child will need to have these steroids into a vein (intravenous) or into a muscle (intramuscular).
Steroid medicine when a child is unwell
Always carry a letter and tell any doctors you visit that your child takes high dose steroids and should have steroids for severe illnesses or for anaesthetics.
Mildly unwell
If your child has a respiratory or ear infection, no fever, no vomiting and no runny, watery poo (diarrhoea), and looks well:
continue normal maintenance doses of steroids
Moderately unwell
If your child is stable with a fever, and reduced activity and can take oral steroids:
continue regular steroid medicine
If your child vomits within 30 minutes of taking their steroid:
give the steroid medicine to them again
If your child cannot take oral fluids:
follow the instructions in the following 'severely unwell' section
speak to your doctor about having a supply of anti-vomiting medicine
Severely unwell
If your child is unwell with vomiting or has more than 2 watery motions (diarrhoea), is drowsy or cannot take oral steroids:
take your child to hospital urgently
If you live a distance away from medical help or are going away on holiday, talk to your doctor about having an emergency supply of intramuscular hydrocortisone. You can give this to your child if they are severely unwell and there is likely to be a delay seeking medical help.
Steroid medicine when having planned surgical procedures
If your child is having a simple planned procedure:
continue giving them their regular oral steroid medicine before they begin fasting for the procedure
If your child is having a longer procedure:
they may need to have their steroid medicine into a vein (intravenously) during the procedure
Important points about steroids
Do not stop taking steroids.
Always seek medical advice early, so that your child's healthcare team can find the underlying cause of illness and start any necessary treatment.
If you child cannot take oral steroids, they will need to have it intravenously or by intramuscular injection.
Remember an extra dose of steroid cannot cause any harm BUT missing the dose in an unwell child can be dangerous.
Acknowledgements
This content has been developed and approved by the New Zealand Paediatric Neurology Clinical Network.
