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New here. Thought my son was having absence seizures, but maybe it's more?

Wed, 11/14/2007 - 09:30

Don'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: New here. Thought my son was having absence seizures, but ma

Submitted by ksquared on Wed, 2008-03-05 - 06:43

Hi. I probably needed to come back and update my original thread anyway. Kyle's EEG indicated generalized absence epilepsy. The closest place for us to get treatment is Texas Children's Hospital in Houston. To see a pediatric neurologist was a 6-month wait, so we saw a nurse practitioner who specializes in pediatric neurology. We were very happy with the care he received there. She put him on Lamictal (generic: Lamotrigine), and we did a gradual dose in order to avoid a dangerous rash that is a side effect. He hasn't developed the rash and is up to two tables in the morning, two in the evening and his seizures are gone! The NP and my husband and I decided to stop at this point; that way, if he needs more medication as he grows, we have a place to go to. We couldn't be happier with the results. Now, it's just the waiting to see if he outgrows them.

 

Good luck!

Beth 

Hi. I probably needed to come back and update my original thread anyway. Kyle's EEG indicated generalized absence epilepsy. The closest place for us to get treatment is Texas Children's Hospital in Houston. To see a pediatric neurologist was a 6-month wait, so we saw a nurse practitioner who specializes in pediatric neurology. We were very happy with the care he received there. She put him on Lamictal (generic: Lamotrigine), and we did a gradual dose in order to avoid a dangerous rash that is a side effect. He hasn't developed the rash and is up to two tables in the morning, two in the evening and his seizures are gone! The NP and my husband and I decided to stop at this point; that way, if he needs more medication as he grows, we have a place to go to. We couldn't be happier with the results. Now, it's just the waiting to see if he outgrows them.

 

Good luck!

Beth 

Re: New here. Thought my son was having absence seizures, but ma

Submitted by GodivaGirl on Sun, 2008-03-30 - 14:28

Hi There,

I don't know if this will help or confuse you, but as someone way older than your son who has been dealing with seizures way longer, I thought I'd take a second and reply back to at least answer your question about the EEG, and maybe give you a little peace of mind that the whole diagnosis doesn't have to change things too much.

I was diagnosed with epilepsy (absense/peti-mal seizures) at age 5.  I'm now 33.  I was never really a brilliant student growing up but pulled off average grades.  Finished high school, got my university degree is sociology & criminology, worked in information technology & am just kinda in between career choices working a crappy call center jobs as I decide between getting my masters in social work upgrading technical certifications -- without a driver's license staying in technology is hard!! It all comes down to money, really, as I'm practically married to the great guy I've been with for 6+ years and we gotta do what's right for both of us.  He wants us to be financially secure before we get married, and with the economy going down hill in Canada we just live happily thinking we'll be in debt 'till we part. HAHA!

Anyways, moving on...now that you know epilepsy and seizures really can't impact life too much, to answer your question.  I've had more EEGs than I can count in life.  Some sleep deprived, some ambulatory, some standard.  In some of them there is activity, in some nothing and they end inconclusive.  My advise, get 2 or 3 EEGs with the same results before you worry.  In the meantime, keep what most people here would call a "seizure journal" to try to find the triggers.  As your son has a seizure what is different in life.  Did he stay up later than normal?  Did he take his meds later, or off track?  Was the weather different?  Too much caffeine?  Too much sugar?  Coming down from a sugar rush?  Hours & Hours in front of a computer/video game system with no break? Watching a really flashy movie (star wars series, matrix series for example).  Growth spirts (i.e. hormonal changes).  People have different triggers.

My triggers: inconsistency in life, stress, weather changes, hormonal changes, aspartame, caffeine, just to name a few.

All you can do is monitor things and work with the medical team, best you can.  You'll probably work with doctors lots for awhile, so find ones you trust and like.  It counts for a lot trusting the medical team.  Also, good luck with Lamictal.  Been there, it didn't work for me when I was 22, but as I say everyone is different.  Personally, I'm always on combinations - right now Topomax, Keppra & Clobazam.  Those 3 work okay, but may change in June.  Time will tell.

 Good Luck.  And remember, knowing what triggers things can help as much as anything.  Let the medical team analyze the reports - try and keep track of when things happen and what was different that day to give the medical team more to analyze.

~Erin/GG

Hi There,

I don't know if this will help or confuse you, but as someone way older than your son who has been dealing with seizures way longer, I thought I'd take a second and reply back to at least answer your question about the EEG, and maybe give you a little peace of mind that the whole diagnosis doesn't have to change things too much.

I was diagnosed with epilepsy (absense/peti-mal seizures) at age 5.  I'm now 33.  I was never really a brilliant student growing up but pulled off average grades.  Finished high school, got my university degree is sociology & criminology, worked in information technology & am just kinda in between career choices working a crappy call center jobs as I decide between getting my masters in social work upgrading technical certifications -- without a driver's license staying in technology is hard!! It all comes down to money, really, as I'm practically married to the great guy I've been with for 6+ years and we gotta do what's right for both of us.  He wants us to be financially secure before we get married, and with the economy going down hill in Canada we just live happily thinking we'll be in debt 'till we part. HAHA!

Anyways, moving on...now that you know epilepsy and seizures really can't impact life too much, to answer your question.  I've had more EEGs than I can count in life.  Some sleep deprived, some ambulatory, some standard.  In some of them there is activity, in some nothing and they end inconclusive.  My advise, get 2 or 3 EEGs with the same results before you worry.  In the meantime, keep what most people here would call a "seizure journal" to try to find the triggers.  As your son has a seizure what is different in life.  Did he stay up later than normal?  Did he take his meds later, or off track?  Was the weather different?  Too much caffeine?  Too much sugar?  Coming down from a sugar rush?  Hours & Hours in front of a computer/video game system with no break? Watching a really flashy movie (star wars series, matrix series for example).  Growth spirts (i.e. hormonal changes).  People have different triggers.

My triggers: inconsistency in life, stress, weather changes, hormonal changes, aspartame, caffeine, just to name a few.

All you can do is monitor things and work with the medical team, best you can.  You'll probably work with doctors lots for awhile, so find ones you trust and like.  It counts for a lot trusting the medical team.  Also, good luck with Lamictal.  Been there, it didn't work for me when I was 22, but as I say everyone is different.  Personally, I'm always on combinations - right now Topomax, Keppra & Clobazam.  Those 3 work okay, but may change in June.  Time will tell.

 Good Luck.  And remember, knowing what triggers things can help as much as anything.  Let the medical team analyze the reports - try and keep track of when things happen and what was different that day to give the medical team more to analyze.

~Erin/GG

My son is 5 years old. He

Submitted by sydney665 on Sun, 2018-01-28 - 12:24
My son is 5 years old. He suffered from myoclonic seizure for over a year, uncontrollably with meds. When he has one it starts where he rolls his eyes back or his eyes are staring off to nowhere, seeing he arms jerk every single night His breathing gets very shallow and his heart rate speeds up, now his not sleeping. I don't think there's any changing he started experiencing one horrible serious side effect of the medicine. I could not get an appointment with a neurologist for 5 weeks. I was filled with worry. Thank God for a wonderful doctor, i read a testimonial of someone on a website her daughter was cure from seizure using herbal medicine. I called the number that was retain at the website, i explain to doctor Lawson about my son symptom and I ordered his medicine. my son used the medicine for month now, his health has change the meds worked without any trace of side effects. For over 1 year now seizure free if you don't have this herbal product it is available. It works, wonderfully. Call him at (979 475-5130 or email dr.lawson52@gmail.com. I'm so grateful that he was able to SURVIVE it

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