Hard timed

[Melissa Hawaii]

Aloha everyone! Ive been reading all of your interesting postings. Sometimes ... These are this is what helps me get through the day Im a mommy if a eleven year old boy who had seizures from 9 years old. Again, they don't know why. Mid january is when is when the seizures came back in full force. It was controlled with tegeretol and keppra for about a year. Except, he would have numbing in all his extremities once a day. He was still functionable. January came and he started dropping at school. And now he having absence seizures. Like one a week, sometimes two. They kept increasing the keppra but it didnt help. He would feel the numbing come on then know his seizure is coming. Sometimes deep breathing helps. But not always. Then, the tegeretol was increased because I told the doctors keppra was changing my little boys moods. He wasnt being himself. Last tuesday he had a seizure at school. Before it happened he had a numbing srnsensation and ran to the healthroom. Immediately after sitting down he had a seuzure. He looked like he was sleeping sitting up. It lasted 20 min. I took him to the hospital and everything came out normal. They added Dilantin to the mix of meds. Hes now on 600mg.of tegeretol, 800mg of keppra, and 150 mg. of dilantin. His neurologist said hes going to decreade and then take him off the keppra. This morning he had another 20 minute seizure...so does that mean even all three meds arent working? Isnt five days enough time to tell?
This weekend there was this huge brain fair on oahu. My husband took my son. Our prayers were answered when the only epileptoligist in hawaii said he would check my son out and give us a second opinion He doesnt usually take kids but he will take our boy. I figure it wouldnt hurt. He came highly recommended...dr.alan stein is his name. Were so scared to send him to school. But he loves school and wants to go. The funny thing is his grades have improved since his seizures started coming back! He tells me all the time that he will be okay, and not to worry. What an example of endurance,and not letting this bring him down. He continues to be rascal as ever! Hes just bummed because hes not able to go diving for fish with his dad lately.
Any input I would so appreciate!! This forum is awsome!

[Nakamova]

Hi Melissa Hawaii, welcome!

It's terrific that you will be getting a second opinion from the epileptologist. Maybe he can re-evaluate and even reduce the number of meds your son is on. Dilantin can control many kinds of seizures -- but is NOT considered effective against absence seizures. And Tegretol can sometimes make absence seizures worse, so that might also be problematic. Have you considered a nutritional approach? Absence seizures often respond to high-fat diets like the ketogenic or Modified Atkins Diet. You can read about it here http://www.medscape.com/viewarticle/728208 and here http://www.atkinsforseizures.com/story.html Ask Dr. Stein about the dietary option if it seems appropriate.

Best,
Nakamova

[Melissa Hawaii]

Thank you Nakamova,
I'm hoping that they can reduce it. Yah, I heard Dilantin has been around a long time. His neurologist said that when he sees my son next week, he's going to try and lower one of the medications and they take him completely off of it. He doesn't like putting children on three different types of meds. But the weird thing is, because he doesn't know which medication to take him off of...He asked me to make that decision. He asked me which medication do I feel that is least working for him. I don't know...I think all the medication isn't working for him, since he's still having seizures! I'm going to look into those two different diet plans. I do notice though that since he's been on dilantin after the second day, his apetite became a lot smaller. And my son loves to eat. So I'm right when I'm calling what I witnessed an Absence Seizure. Looking like he's sleeping, not jerking of the hands or anything, but very loose, and not responsive? Thank you so much for those two links...You take care

[Nakamova]

Yes, what you describe definitely sounds like an absence seizure.

And Dilantin can be an appetite suppressant, so you're spot on with noticing your son's decreased appetite. As for which med to decrease -- I agree, none of them seem to be perfect for your son, especially because NONE of them are ordinarily used for absence seizures. One med that does have a decent track record against absence seizures is Lamictal, but you have to ramp up on it very slowly, so it can take several months to see results. Zarontin is another one that works against absences.