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anyone have experience of myotonic dystrophy?

(4 Posts)
dontmentionit Sat 15-Mar-14 07:33:20

Hi there trying to get a dx for my little boy. The consultant has suggested md as a possibility, whilst waiting for the tests, can anyone advise their experiences of children , ie behavioural emotional symptoms please?

Does he have the classic 'look'? Children with Congenital Myotonic dystrophy have a sort of tent shaped mouth that hangs open , weak muscle tone with an inability to let go (myotonia = stiffness)..hands don't open again easily if asked to squeeze. My son was tested for this (he had the face shape..still does but less so with age)

If he has it then usually the mother does too to a milder degree, and I was tested too.

I also happen to work with a child who has myotonic dystrophy. He has learning difficulties too, but has MD quite severely..his mum doesn't. He can be very stubborn but is otherwise not very difficult, although I know behavioural difficulties are quite common.

dontmentionit Sat 22-Mar-14 22:54:04

Thanks medusa, he does have the open mouthed expression, interesting what you you say about the stubbornness. Will check with the hands tomorrow thanks again

dontmentionit Sat 22-Mar-14 22:54:31

Thanks medusa, he does have the open mouthed expression, interesting what you you say about the stubbornness. Will check with the hands tomorrow thanks again

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