Tuesday, October 25, 2011

Seizures (mecp2 duplication and mecp3 triplication kids)

I remember thinking on how well Austin was doing because he had not developed seizures yet with his disorder. We were warned many times by Doctors that this was a possibility with Austin. Although he would have longer seizures when he would spike a temp with a bad illness, we thought then it was only febrile seizures. Now we have learned this is part of Austin's every day life. For so many of these kids who have been on multiple meds it is in their everyday life too. I HATE SEIZURES! I hate watching them every time Austin has one and can not imagine the stress it does on his little body. They look so violent and he has absolutely no control when they happen. I think sometimes that if if talk calmly to him or hold his hand, legs or rub his head that it will make them stop sooner. It is 7 or 8 seconds, which may not seem long, but when it can happen lots of times during the day to an 8 yr olds body is horrible. So because of these seizures we recently have added a new seizure med to one that he is already on. Please pray that this will help reduce the intensity, frequency and hopefully stop them! He is so happy even with everything he goes through, which is such a sweet blessing. He loves school and please pray that this winter has has less sick days than expected so he can stay in school! This is a very hard time of year for him so the healthier the better for this little guy! Thanks for your prayers for him and I hope everyone is enjoying this October!

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