Stella Johnson
Active Member
SO and I couldn't find anything else to watch one day a few weeks ago. We ended up watching Discovery Health. There was a show about a little girl who started having unexplained seizures and behavior problems about the same age as difficult child did. Age 3.
Her parents took her to numerous docs including neurologists. They all said it was a seizure disorder. She had grand mal, temporal lobe and petit mal seizures just like my difficult child. She also had behavior problems and learning disabilities.
All of the docs wanted her on Depakote and one other drug that I can't remember the name of at the moment.
Her parents weren't satisfied with just knowing she had seizures. They wanted to know the cause. When difficult child started having these I searched the net and basicly they just said it's her brain mulfunctioning and there is no real "cause". This girl's parents found a study in Europe for kids with seizures. They were testing to see if it could be food allergies causing this.
Turns out the girl has celiac disease. The wheat gluten was causing the seizures. This was two years ago. The immediately took the girl off all wheat gluten. She no longer has seizures and within that year she had caught up with her peers academically.
To test for Celiac they first do blood work from what I understand. If she tests positive for the antibodies they have to put her out and use a scope to look at her intestines. I'm not very hip on having her put to sleep at such a young age though. I'm thinking of just doing the blood test and trying the diet first.
I wish I had asked "why" more often. I think I was so beaten down with all of difficult child's problems that I would tried ANYTHING and didn't ask more questions.
The Depakote has worked wonderfully for difficult child. She has been stable for a very long time now. I just worry about the long term effects of having her on this. The cognitive dulling doesn't help with her learning disabilities either.
difficult child's neuro mentioned at our last visit that we could try weaning difficult child off the medications if I wanted to. I was afraid to since school was about to start. The beginning of any change like school is usually pretty tough.
I'm going to make a neuro appointment for difficult child to discuss weaning off the medications and the celiac. What do you guys think?
Steph
Her parents took her to numerous docs including neurologists. They all said it was a seizure disorder. She had grand mal, temporal lobe and petit mal seizures just like my difficult child. She also had behavior problems and learning disabilities.
All of the docs wanted her on Depakote and one other drug that I can't remember the name of at the moment.
Her parents weren't satisfied with just knowing she had seizures. They wanted to know the cause. When difficult child started having these I searched the net and basicly they just said it's her brain mulfunctioning and there is no real "cause". This girl's parents found a study in Europe for kids with seizures. They were testing to see if it could be food allergies causing this.
Turns out the girl has celiac disease. The wheat gluten was causing the seizures. This was two years ago. The immediately took the girl off all wheat gluten. She no longer has seizures and within that year she had caught up with her peers academically.
To test for Celiac they first do blood work from what I understand. If she tests positive for the antibodies they have to put her out and use a scope to look at her intestines. I'm not very hip on having her put to sleep at such a young age though. I'm thinking of just doing the blood test and trying the diet first.
I wish I had asked "why" more often. I think I was so beaten down with all of difficult child's problems that I would tried ANYTHING and didn't ask more questions.
The Depakote has worked wonderfully for difficult child. She has been stable for a very long time now. I just worry about the long term effects of having her on this. The cognitive dulling doesn't help with her learning disabilities either.
difficult child's neuro mentioned at our last visit that we could try weaning difficult child off the medications if I wanted to. I was afraid to since school was about to start. The beginning of any change like school is usually pretty tough.
I'm going to make a neuro appointment for difficult child to discuss weaning off the medications and the celiac. What do you guys think?
Steph