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Myotonia Congenita Forum


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Myotonia Congenita Forum
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Just discovered this forum.

Hi there! My name is Cristi and I am the mother and wife of MC sufferers. My husband Ron was diagnosed when he was 3 or 4 and, like many of you, tried the poor treatments they had back in the 70's and 80's. In the end, he decided to just deal with his condition as best he could, and learned to work around it. Now, at 43, he has found his cramping has diminished. While he still has to be careful and cramps daily, it's more in the minor muscles of the hands, feet, and face. He hasn't had a full body attack in many years.

However, we have a 6 year old daughter who also has MC, and it's still in full force. She takes Oxcarbazepine (Trileptal) and has since she was diagnosed when she was 4 weeks old. It has helped her quite a lot and really has cut down on her cramps. Unfortunately, it doesn't take away all the cramps, so it's still a daily struggle.

In fact, that's how I discovered this forum. I remember looking for a community like this years ago when she was first diagnosed, but found nothing. So, we've been stumbling through raising a child with MC ever since. We, of course, have extra insight because my husband has it, but there are still lessons we've had to learn the hard way. Lessons like making sure to fully explain the disorder to every baby sitter or teacher. (We forgot that once when in a hurry and the baby sitter freaked out)

Delaney, our daughter, just started first grade a few weeks ago. I always take the time to meet with her teachers before school starts up so that I can explain Delaney's condition and how best to deal with the cramps when they happen. Her first grade teacher listened closely, but didn't fully understand until the second day of school when the muscles around Delaney's windpipe cramped and she stopped breathing for a few seconds. This, as is to be expected, scared the teacher, and so she did a lot of research on the disorder and found this site.

And I'm so grateful she did! The information page for school staff is amazing and I will be giving a copy to every teacher from now on. Plus, it is so nice to have a forum so that I can talk about issues that we're going through with both my Ron and Delaney.

When Delaney was first diagnosed, I had hoped to find a support group with parents who were going through what we were going through. As Delaney grew, I thought it would be amazing to have a play group with other children with MC so that she could commiserate with peers that fully understood what she was going through. One day, I may find that, but at least having this forum to express worries and fear, and joys and triumphs will be amazing. Thank you for being here.

Type of Myotonia: Thomsen's

Country: USA