Re: Stop what your doing

Posted by dhermescc on July 14, 2006 at 09:29:09 from (68.110.220.22):

In Reply to: Re: Stop what your doing posted by DJL on July 14, 2006 at 08:30:26:

Much like your son ours was "normal" until he hit three years old, then we noticed he would occasionally have an eye twitch. After a single day of testing he was diagnosed with epilepsy. For the past 4 years we've been in and out of hospitals while trying to carry on as normal of life as possible. He suffers from small seizures that can build to grand mal seizures. He displays Parkinson’s like tremors and symptoms, difficulty talking, walking, eating etc, but his mind remains clear which makes the effects all the more devastating. According to his EEG he can have as many as three seizures a minute and at times it hard to even tell when they start and stop. There are days when he can not walk or talk because he is having to many, then there are days he seems like a normal 6 year old that hates to wear his helmet while riding his bike.

Right now he has a VNS implant, he's on 4 drugs (already tried 15 others) and he's on the KETO Diet. He has improved greatly since January and spent a week at the Cleveland Clinic in June for further evaluation. Doctors have no idea why he has epilepsy since it's not genetic nor has any test shown an abnormality of any type.

I can only imagine the pain you and yours have gone through and wish to express my sympathy. These little guys can be so tough and endure treatment that would leave a grown man begging for mercy.

Replies:

• Re: Stop what your doing MACE 15:00:31 07/14/06 (1)
  • Re: Stop what your doing dhermesc 15:31:07 07/14/06 (0)

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