My dd has epilepsy....anyone else out there with son/daughter??

[sheryl]

My almost 9 yo dd has epilepsy. She had her first seizure 3/15/07 (just a bit away from turning 8) at our bible study.

Ironically her "symptoms" did not become visually obvious again until May. From May to Dec 07 she worsened with absence seizures/staring spells that last 1-3 seconds in duration. Her worst peak was 3 days in the first week of Dec she had approx. 50-75!!

Up to that time and afterwards she hovered at around 10-25 a day. Now that she is on 2 meds she is down to an average of 5-10 a day. The neurologist, of course, is hoping and "working" towards 0 seizures. They are very encouraged she will outgrow it because of the "type" she has and the other variables. There is an 85% chance she will outgrow it, but only time will tell.

This is heart wrenching. It's mentally, physically, emotionally draining. However, when I give it over to God it becomes bearable. This condition just has it's trying moments. My husband and I have noticed that her brain has to have a release or an outlet. That's why we think when she was reading a book a week, kids full novels, last summer at the age of 8 years and a couple of months..it's what she needed to do to calm her brain by "working out" symptoms in another form instead of a seizure!!! We've noticed that if she does NOT have a high seizure day, her brain compensates by having a bad behavior day. REALLY BAD!!

Just wanted to share my thoughts!
If you have anything to share, I'd love to hear from you.

Sheryl
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[Sasharowan]

No real help, just want to say that you have company, although my two are don't have as frequent as your dd. I have a 8yo dd that started seizing just before she turned 5. She goes on a pattern of 2-3 months free, a few staring episodes that get more frequent and culminate in a grand mal. She has been on Trileptal since she was 5. She has finally reached a point of being almost 20 mos. free.

I also have a 6yo ds that started seizing about 3 yo, approximately 6 mos. after his sister started. He has only had 5-6 seizures total. He was put on Tegretol right away and has been on it since. He has what they call break-through seizures whenever he hits a growth spurt and they have to increase his meds. He made it to 22 mos. seizure free and we thought he was done and then he had one. I really hate this med for him cause it knocks him out and interferes with schooling. It would be impossible if we weren't homeschoolers.

My dd has bad behavior, especially disrespect and talking back. I just figured it was pre-puberty kicking in. Especially since her older brother got real bad around that age.

Just wanted to let you know you are not alone.

[godpoetry]

My son is 10 and has been having seizures that we know of since he was 8. The doctor said he was probably having them earlier than that, but we did not recognize them. He has simple complex seizures. He can have any kind of seizure at any moment. He is on high doses of 2 different kinds of medicines. He currently is down to some seizures, depending on circumstances. It is very scary still, even after two years of dealing with it. He does have some behavior issues too that I have noticed. He is being tested next week by an neuro-psychologist because his neurologist feels that he may have a form of autism. He has a hard time with his memory also. They say that is due to his seizures.

[Ottakee]

My 2 girls have seizures.

My 12dd has complex-partial seizures. Hers also affect her speech a great deal. When her med levels are right, she is almost stutter free, when the levels are off she has a very severe case of stuttering. She is on Tegretol XR 800mg am, 400mg afternoon, and 800mg evening. Then she is on Lamictal 325mg am and 300mg pm (going up). These are VERY high doses as she is very tiny--wears size 7/8 clothes in young girls sizes.

11dd has a Chiari I malformation and had one big seizure and then had drop seizures which we first thought were due to her mild CP. Since on meds though her migraines and "falling down" stuff has disappeared. She is on Lamictal but only 50mg am and 37.5mg pm and she is almost the same size as her sister.

Both girls also have POLG-1 and Lebers---Nuclear DNA and mitochondrial DNA mutations. The POLG-1 has seizures as one of the symptoms. They also both have mood disorders which is another symptom.