hi. my names Paige and i am 11 yrs old. like your son, i was passed around like a parcel until i was finally diagnosed with Becker MC. i just wanted to let you know that you don't need to be pressured into having your son take any drugs. (that is what it is, isn't it?!) anyway, i don't take anything apart form calpol and manage perfectly fine. if you don't know anything about it because i know because its such a rare disease alot of doctors don't really know a great deal, here are a few pointers.
1. try and keep him warm, especially in winter.
2. make sure all his teachers know whats wrong, so he doesn't feel embarrassed if he goes stiff.
3. people say that potassium makes MC worse, but in my experience it doesn't, so he can eat bananas!
4. don't be alarmed if his face goes stiff or his tongue. all our muscles go stiff so this includes EVERYTHING!
OK, think im done. there are alot more things, but these are what i think, the main. thanks for listening.
see ya, luv Paige void(0);

Type of Myotonia: becker

Country: UK

I would say a big fat NO to that kind of drug at that age.

It's a disease manageable without medications of that kind of strength. It's neither progressive nor life-threatening. I would look into physical management of symptoms and mental management--a LOT can be done through the right kind of warm up, even within a single movement, and in training oneself to use the minimum effort to achieve the goal at hand--that prevents a LOT of freeze-ups.

Type of Myotonia: Thomsen's

Country: USA