It is important that the condition is managed by a neurologist, and referral to one can be made by your child’s paediatrician.
Heart problems can develop with the condition, which are commonly treatable but can be serious if ignored. Speak to your child’s neurologist or paediatrician about your child having an annual electrocardiogram (ECG). This can be performed by a cardiologist.
Can my child have an anaesthetic?
Anaesthetics can be risky. It is very important that surgeons and anaesthetists are aware a child has congenital myotonic dystrophy before surgery is planned.
It is also helpful to complete a neuromuscular care plan, which contains information to alert emergency and other healthcare professionals to the specific issues that affect people living with congenital myotonic dystrophy. These are available for free from Muscular Dystrophy UK – call the freephone helpline on 0800 652 6352 or email info@musculardystrophyuk.org.
Can a child with congenital myotonic dystrophy have the usual immunisations?
Yes.