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Myotonic muscular dystrophy type 1 - FAQ

From Parents/Families

Who gets myotonic muscular dystrophy (MMD)?

Most children who are born with the congenital form of MMD inherit it from their mother, although in general myotonic dystrophy can be inherited from a mother or a father. It is one of the most common muscular dystrophies.

My son is 10 years old and still drooling. Why is this, and is there anything we can do?

Children with congenital myotonic muscular dystrophy often have significant facial muscle weakness that may lead to drooling. Drooling can be a social barrier and will often respond to treatment. Your first step should be to consult a feeding specialist for a thorough evaluation of your son's oral abilities. Depending on results, there are several treatment options. The feeding specialist may be able to give your son strategies to alleviate drooling. If that is not successful, a visit to an otolaryngologist may be helpful for the consideration of temporary treatments to decrease drooling (botulinum toxin injections) or longer-lasting surgical treatment.

Why does my child take so many naps and have to rest after just a few minutes at the playground?

For unclear reasons, children and adults with MMD fatigue very easily. Adults will describe having to take a nap after doing simple household tasks. Although there are several medications that might be helpful for older children and adults, including stimulants and modafinil, these are rarely used in young children. Behavioral management should include keeping to set bedtimes, naptimes, and wakeup times, and planned rest periods during the day. Energy conservation is also important. The family should be encouraged to use a disability placard/plate for their car to preserve the child's energy.

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Content Last Updated: 3/2010