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New here. Thought my son was having absence seizures, but maybe it's more?
Wed, 11/14/2007 - 09:30Don't know if this is the place to start, but here it goes.
My name is Beth. I have two children, Kyle (8) and Katie (6 on 12/31). About a year ago, my husband and I started noticing that Kyle would "zone out" during normal conversation. It wasn't that he was distracted or daydreaming or just not listening. It was like he left us for about 10 seconds. When he'd come back, he didn't even know what had happened or why his dad and I were yelling his name.
My daughter had an undiagnosed hearing loss that led to a speech delay, so my first thought was that Kyle had a hearing problem. I took him to the audiologist in February and he passed all hearing tests with flying colors. So then I assumed that he just wasn't paying attention to us. I can't remember the frequency of episodes throughout the spring, but I know he had them. He plays baseball and when my daughter and I would meet my husband at the ballpark, he'd tell me that Kyle was in his own little world that day.
I intended to bring it up at his ped check-up in the summer, but for some reason, the incidents didn't seem so plentiful then. Maybe he was having them and we weren't noticing them because the summer is low-key around here. Maybe he wasn't having them as much because he wasn't as tired as usual (he tends to have them in the afternoon/evenings). So I didn't say anything to the ped.
When school started this year, he started having a lot of them. My mother-in-law picks the kids up from school in the afternoons and she noticed him having two or three most afternoons while she was working with him on his homework. When I went for a report card conference two weeks ago, I mentioned them to his teacher. She said that she hadn't noticed them, but that it sounded to her like a petit mal seizure.
I'm not this teacher's biggest fan, so I just filed this away. That weekend, though, Kyle had several episodes, so I Googled 'petit mal seizures.' That led me to 'absence seizures.' All of this sounded exactly like what was happening to Kyle.
I called the ped and he had an EEG yesterday. He was sleep-deprived, and had one episode before the test began. During the sleeping part of the test, I know he had at least one that I could see (the room was dark and I really couldn't see him that well at first). He makes these chewing/smacking movements with his mouth when he has them and that's what I noticed. Then they did the hyperventilation part of the EEG. Not only did he have an absence seizure, but he also had what I would call a classic seizure -- his back started arching and his hands were shaking.
We have at least two days before we get the results of the EEG. I'm fairly certain that our pediatrician will refer us to Texas Children's Hospital in Houston, since there are no pediatric neurologists in our area.
My question is, from what y'all know, does the more violent, convulsive nature of the seizure during the hyperventilation part possibly mean that Kyle has more than just absence seizures?
Just for more background, he is a healthy kid. He rarely gets sick -- during the summer, he usually gets an ear infection from all the swimming he does. He makes all As in school and is in the gifted and talented class. His behavior is good. He has never had any major head trauma that I know of. He is a boy, though, and plays outside all weekend long. But I believe that if he were ever hurt that badly, I would know about it. He doesn't complain of headaches, although he told the tech yesterday that he does get them. His birth was normal and he was full-term. To my husband's and my knowledge, no one in our families have had any sort of epilepsy or seizures on a regular basis.
This is very scary, as I'm sure y'all know. Any experiences or advice is much appreciated!!
Comments
Re: Absence Epilepsy
Submitted by susnoe1010 on Sun, 2008-02-10 - 07:03
Sue, I'm just reading your post now, but my 11y.o. daughter is following the same pattern as Erin. We have already gone thru Lamictal (Had the rash,) then Keppra, (increased the seizures when dosage increased), then Topamax and Keppra (no noted improvement), and just yesterday began with Zarontin and Keppra. I obviously don't know anyone else whose child deals with absence seizures, and am interested in the other behaviors you mentioned. I see those, too. And I share the sports concern as well.
Thanks, Susan
Sue, I'm just reading your post now, but my 11y.o. daughter is following the same pattern as Erin. We have already gone thru Lamictal (Had the rash,) then Keppra, (increased the seizures when dosage increased), then Topamax and Keppra (no noted improvement), and just yesterday began with Zarontin and Keppra. I obviously don't know anyone else whose child deals with absence seizures, and am interested in the other behaviors you mentioned. I see those, too. And I share the sports concern as well.
Thanks, Susan
Absence Epilepsy
Submitted by scotting on Thu, 2008-01-10 - 11:10
Hi, my name is sue and my daughter erin just had an eeg yesterday to diagnose the extent of her absence epilepsy. My daughter does have some learning disabilities regarding her auditory processing, but I am just finding out about her epilepsy. She is 8 years old and a few months ago was complaining that her brain was hurting and she did not feel like herself. She kept writing me letters to tell me this as she has some trouble communicating verbally. I contacted the school whom recommended I see a neurologist. I waited about 4 months and didn't think much of it. She was not sleeping well at all and had difficulty even falling asleep. I had witnessed some unusual behaviors and noticed her being very compulsive about certain things (ie. hand washing, sleeping on her bed which she kept saying was dirty, etc.) My husband and I took her to two child psychiatrists and they immediately medicated her w/Lamictal (a drug usually used for epileptics)(Keep in mind at this point I had no knowledge of any form of epilepsy) They informed me she had adhd.
My daughter had a rash from the drug and after taking it for about a week discontinued usage of it. She looked horrible. She was pale and just not herself. Within about a month she completely stopped her compulsive behaviors and was sleeping somewhat better. Honestly, the medication had no bearing b/c she was not on it long enough. Anyhow, in the meantime a few weeks later her speech teacher informed she had witnessed some unusual mannerisms that my daughter had displayed just around the time she had taken the meds. She had said her eyes rolled and she seemed a little out of it and had no recollection of what the teacher had just taught. She told me she had informed the principal, but I was never notified. I told the pediatrician and in the meantime was awaiting my neurologists appt.
Once at the neurologist, he had sort of dismissed why I was there. He had administered a vector test and my daughter went into a petit mal seizure right before my eyes. It was a bit freaky. He told me she has absence epilepsy and we are awaiting our eeg results to see if she needs to be medicated and to what extent. I told him she had been on Lamictal for adhd and he said that could increase her chances of having a seizure. It all sort of made sense. I had never witnessed I seizure to my knowledge but have seen her spaced out sometimes and I would lose patience with her when I thought she was not listening.
I am concerned b/c my 6 year old has already had a seizure at birth and 3 febrile seizures by age 5. Her seizures were more convulsive in nature (ie. shaking, teeth chattering). I never really thought much of them but am now concerned for her as well. Keep in mind I have no family history of epilepsy(I do have a nephew whom was just diagnosed in the autism spectrum)(the neuro said there can be a familial link between the two). My husband is adopted and we have no history.
Do I start having her tested now as well? I wonder if my older daughter will have to discontinue her favorite sports? I am trying not to tell her too much and get her upset w/out knowing the extent of it.
Thanks for letting me vent!
Hi, my name is sue and my daughter erin just had an eeg yesterday to diagnose the extent of her absence epilepsy. My daughter does have some learning disabilities regarding her auditory processing, but I am just finding out about her epilepsy. She is 8 years old and a few months ago was complaining that her brain was hurting and she did not feel like herself. She kept writing me letters to tell me this as she has some trouble communicating verbally. I contacted the school whom recommended I see a neurologist. I waited about 4 months and didn't think much of it. She was not sleeping well at all and had difficulty even falling asleep. I had witnessed some unusual behaviors and noticed her being very compulsive about certain things (ie. hand washing, sleeping on her bed which she kept saying was dirty, etc.) My husband and I took her to two child psychiatrists and they immediately medicated her w/Lamictal (a drug usually used for epileptics)(Keep in mind at this point I had no knowledge of any form of epilepsy) They informed me she had adhd.
My daughter had a rash from the drug and after taking it for about a week discontinued usage of it. She looked horrible. She was pale and just not herself. Within about a month she completely stopped her compulsive behaviors and was sleeping somewhat better. Honestly, the medication had no bearing b/c she was not on it long enough. Anyhow, in the meantime a few weeks later her speech teacher informed she had witnessed some unusual mannerisms that my daughter had displayed just around the time she had taken the meds. She had said her eyes rolled and she seemed a little out of it and had no recollection of what the teacher had just taught. She told me she had informed the principal, but I was never notified. I told the pediatrician and in the meantime was awaiting my neurologists appt.
Once at the neurologist, he had sort of dismissed why I was there. He had administered a vector test and my daughter went into a petit mal seizure right before my eyes. It was a bit freaky. He told me she has absence epilepsy and we are awaiting our eeg results to see if she needs to be medicated and to what extent. I told him she had been on Lamictal for adhd and he said that could increase her chances of having a seizure. It all sort of made sense. I had never witnessed I seizure to my knowledge but have seen her spaced out sometimes and I would lose patience with her when I thought she was not listening.
I am concerned b/c my 6 year old has already had a seizure at birth and 3 febrile seizures by age 5. Her seizures were more convulsive in nature (ie. shaking, teeth chattering). I never really thought much of them but am now concerned for her as well. Keep in mind I have no family history of epilepsy(I do have a nephew whom was just diagnosed in the autism spectrum)(the neuro said there can be a familial link between the two). My husband is adopted and we have no history.
Do I start having her tested now as well? I wonder if my older daughter will have to discontinue her favorite sports? I am trying not to tell her too much and get her upset w/out knowing the extent of it.
Thanks for letting me vent!