Okay, LONG story but i'll keep it as short as possible. My 6 year old son was diagnosed in March 2009 with Complex Partial seizures because he suddenly started having seizures a few times a week and occasionally 2x a day. They lasted anywhere from 5 minutes to 45 min. We, of course called an ambulance every time and he spent 5 days at Egleston in Atlanta. They did an MRI, an EEG, an EKG and various other X-Rays and blood tests.They could find no cause for the seizures which I guess happens a LOT with epilepsy. Anyway, he was put on Trileptal *3cc/5ml 2xdaily*. His seizures stopped until the end of June when he had two within 12 hours. After those, he was seizure free until November. (Just to add some info; In August, his new teacher suggested I have him tested for ADD because he couldn't focus in school and was having a hard time keeping up educationally because of it. His doctor put him on 5mg of Adderall in the a.m. for 2 months, then increased to Adderall XR10mg-We only gave him that medicine during the week when he had to be at school)
In November his seizures came back. He was having one approx. every other day for about 2 wks, then they started occurring multiple times a day until finally in december, his neurologist suggested we put him into the hospital if he had another one. That same afternoon, he went into a seizure that lasted for 35 minutes so we took him to the ER where they contacted his neurologist and . they gave him Ativan and Keppra (*250 I.v.) At this point, his seizures started happening for about 1-5 minutes, every 5 minutes. He was transferred to Egleston where they continued the Keppra and Ativan. He had a BAD reaction to the Ativan and started hallucinating about skeletons coming out of the wall, etc.. so they quit giving him that, Thank God! His seizures actually stopped during the night though..supposedly..It seemed more like they just started coming in a different form! He seemed almost narcoleptic because he just kept dropping out of consciousness every 5 minutes for about 24 hours. I was told it was the side effects of the Ativan wearing off and that it would stop within a day or so. The next a.m. (while still under the effects of the Ativan) they did another extended EEG, still nothing!
Well, they said they saw a little seizure activity on the right side of his brain but didn't tell me much else. For the next two days we stayed at the hospital because he kept having these strange seizure/narcoleptic episodes. They finally said that it was the Keppra and that it should wear off and we should follow up in 3-4 weeks. Over the next day or so, I realized that during these episodes, he would try to curl into the fetal position, refuses to look toward any source of bright light (even with his eyes squeezed shut) and would become aggressive afterward. My normally sweet, loving child was now saying "Don't touch me!" and trying to hit and bite me! About 2 days after we got home I had to take my daughter to their pediatrician for a check up and my son went with us. His doctor witnessed two of these strange unconscious episodes" and had him taken to Scottish Rite by ambulance. Once there, I was told it was just medication side effects and to take a B6 supplement to counteract the "Keppra Rage"....They did another EEG and sent us home to follow up this week to allow the Keppra time to get into his system and any side effects to subside.
This week, I called. He is still having these odd episodes a couple of times a day. They have increased his Keppra again but he still has them. He is completely unconscious at first but after a few minutes he can hear me but cannot talk, open his eyes or move his body any more than to twitch his fingers or move his head a tiny amount on command. I'm confused by all this! We have withdrawn him from school this week and are now homeschooling him so he will no longer be taking any ADD medicine--I haven't given it to him since the last week of November because he wasn't attending school. Anyone have any thoughts on why his seizures may have changed? His neurologist is okay I guess. She def knows her stuff (even graduated from Johns Hopkins) but should I seek another opinion? I hate not knowing whats wrong with him or if he will grow out of it. I also HATE the fact that he has to just keep taking more and more medicine!! Thoughts? Advice? Opinions?
**His stomach ALWAYS hurts and he feels nauseas before and after a seizure. Could it be an "Aura"?
**He once told me , while crying about it, thta he hears bad words over and over in his head and his brain wants him to say it out loud but his heart knows he shouldn't so he tries not too. **
In November his seizures came back. He was having one approx. every other day for about 2 wks, then they started occurring multiple times a day until finally in december, his neurologist suggested we put him into the hospital if he had another one. That same afternoon, he went into a seizure that lasted for 35 minutes so we took him to the ER where they contacted his neurologist and . they gave him Ativan and Keppra (*250 I.v.) At this point, his seizures started happening for about 1-5 minutes, every 5 minutes. He was transferred to Egleston where they continued the Keppra and Ativan. He had a BAD reaction to the Ativan and started hallucinating about skeletons coming out of the wall, etc.. so they quit giving him that, Thank God! His seizures actually stopped during the night though..supposedly..It seemed more like they just started coming in a different form! He seemed almost narcoleptic because he just kept dropping out of consciousness every 5 minutes for about 24 hours. I was told it was the side effects of the Ativan wearing off and that it would stop within a day or so. The next a.m. (while still under the effects of the Ativan) they did another extended EEG, still nothing!
Well, they said they saw a little seizure activity on the right side of his brain but didn't tell me much else. For the next two days we stayed at the hospital because he kept having these strange seizure/narcoleptic episodes. They finally said that it was the Keppra and that it should wear off and we should follow up in 3-4 weeks. Over the next day or so, I realized that during these episodes, he would try to curl into the fetal position, refuses to look toward any source of bright light (even with his eyes squeezed shut) and would become aggressive afterward. My normally sweet, loving child was now saying "Don't touch me!" and trying to hit and bite me! About 2 days after we got home I had to take my daughter to their pediatrician for a check up and my son went with us. His doctor witnessed two of these strange unconscious episodes" and had him taken to Scottish Rite by ambulance. Once there, I was told it was just medication side effects and to take a B6 supplement to counteract the "Keppra Rage"....They did another EEG and sent us home to follow up this week to allow the Keppra time to get into his system and any side effects to subside.
This week, I called. He is still having these odd episodes a couple of times a day. They have increased his Keppra again but he still has them. He is completely unconscious at first but after a few minutes he can hear me but cannot talk, open his eyes or move his body any more than to twitch his fingers or move his head a tiny amount on command. I'm confused by all this! We have withdrawn him from school this week and are now homeschooling him so he will no longer be taking any ADD medicine--I haven't given it to him since the last week of November because he wasn't attending school. Anyone have any thoughts on why his seizures may have changed? His neurologist is okay I guess. She def knows her stuff (even graduated from Johns Hopkins) but should I seek another opinion? I hate not knowing whats wrong with him or if he will grow out of it. I also HATE the fact that he has to just keep taking more and more medicine!! Thoughts? Advice? Opinions?
**His stomach ALWAYS hurts and he feels nauseas before and after a seizure. Could it be an "Aura"?
**He once told me , while crying about it, thta he hears bad words over and over in his head and his brain wants him to say it out loud but his heart knows he shouldn't so he tries not too. **
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