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Anyone have experience with complex partial or absence seizures?


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My dd had absence siezures. In fact, at the time of diagnosis, she was have hundreds a day, as picked up on a 48 hour eeg. I was only noticing ones that were longer than 30 seconds. I was noticing about 7 a day by the time we were able to see a neurologist.

 

The neurologist said she'd be on drugs the rest of her life and did not attempt to think very hard about causes.

 

Turns out dd has celiac. Her seizures were a result of the effect of severe nutritional deficiencies on her brain chemistry. I never witnessed another siezure after being going on the gluten free diet. dd was taken on the siezure medication (gradually--can't do that cold turkey). eeg found she was siezure free.

 

We've been gluten free 7 years. I had to seriously bug doctors to test her for celiac. All doctors said it was remote the siezures were caused by celiac and didn't want to test. If we'd stayed the course with the siezure drugs and followed the first neurologist's advice I am certain dd would have suffered serious liver damage--due to celiac dd had very little intestines working. The drugs were getting dumped directly into her bloodstream and bloodtesting should her liver was taxed by the amount the doctor was prescribing.

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My dd has both & has had them since she was 6.

 

They aren't harmless in the sense that they effect her learning. Her complex-partial seizures were diagnosed first and the meds for those didn't stop the absence seizures. Now she is on a med that is supposed to stop them both.

 

She takes 2-3 times as long to do her school work as her brother. If I think about it too much, I get sick inside. I wonder how she'll/we'll ever get through high school.

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My ds13 had them as a result of Shaken Baby Syndrome. He would check out for seconds at a time. A nuerologist described what it probably felt like for Philip. Say he was counting, he'd think 1,2,3,4,4,4,4,4,5, 6, etc.

 

At the very poor advice of a whacked out psychiatrist, he was on all sorts of meds. We got him off of all of the meds and he grew out of the seizures. He hasn't had one in 4 years. He has ADD, but seems to manage well w/o meds. It's hard to tell in a 13 yo boy. Those of you that have one, you know what I'm talking about. He acts so clueless sometimes, but I really believe it's his age.

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please check into neurofeedback. There is a father in NH whose daughter was SO sick from seizures and meds weren't helping enough. They feared for her life. He did a ton of research and discovered neurofeedback. He bought his own equipment and got training on it and used it on his daughter. She now lives a normal life. She is still on meds but is doing well, minus the learning disturbances.

 

My daughter was diagnosed with both over a year ago but the diagnose was wrong. She's had no issues in 13 months but we still can't figure out why her lips/nose turn blue at times. We've been to a cardiologist, 4 neurologists and 3 pediatricians and still don't have an answer. Thankfully it doesn't happen often and when it does she no longer feels like she's going to pass out.

 

I was sold on neurofeedback to help her but was going to take her to someone instead of doing the work myself.

 

Denise

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That is just what it's like. You finish part of a thought and then go back and think it again, and again, and again.

 

There are many potential causes and therefore a few potentional cures. How often do you think your dc has been having them?

 

I've only noticed it maybe 3-4 times a week for the past month. He will come to me to tell me something and then just stop, mid-sentence/thought like a pause button has been hit. Physically, he will still be moving, but mentally he is on pause and doesn't speak. It will last for maybe 5-8 seconds.

 

When they first started happening I thought it was his hearing, because there would be occasions where I would call his name over and over (while standing a few feet away), but he did not realize it.

 

Today he missed one word on his spelling test - he didn't spell it wrong, he just left it out entirely, and I wonder if maybe he had one then, too. All the other words were perfect.

 

The pediatrician is setting up an EEG for him and an appt with a neurologist.

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That is just what it's like. You finish part of a thought and then go back and think it again, and again, and again.

 

There are many potential causes and therefore a few potentional cures. How often do you think your dc has been having them?

 

For me, I think since birth. She would have staring episodes and the ped. said babies do that. I think those were little seizures.

 

Her complex-partial were diagnosed when she was 6. She was in seizing with no breaks for hours (status epilepticus) non-responsive, lips-smacking and her right side shaking. In the ER their first thought was brain bleed, tumor or lesion.

 

Thank God it wasn't that.

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I've only noticed it maybe 3-4 times a week for the past month. He will come to me to tell me something and then just stop, mid-sentence/thought like a pause button has been hit. Physically, he will still be moving, but mentally he is on pause and doesn't speak. It will last for maybe 5-8 seconds.

 

When they first started happening I thought it was his hearing, because there would be occasions where I would call his name over and over (while standing a few feet away), but he did not realize it.

 

Today he missed one word on his spelling test - he didn't spell it wrong, he just left it out entirely, and I wonder if maybe he had one then, too. All the other words were perfect.

The pediatrician is setting up an EEG for him and an appt with a neurologist.

 

My daughter would leave things blank on worksheets when she was very young (K & 1st) and then say she didn't see it. I think it was the seizures. As she got older, she learned to check her paper before she considered it "done" but sometimes she'd still leave problems blank.

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Yes, my dd had absence seizures all of 2008. They are under control now. You may want to consider posting this on the special needs board. That's where you'll find many of us post on our special needs kids/issues.

 

More than likely your pediatrician may not be the one to determine if your child has epilepsy. You need to find a "pediatric neurologist" and start the procedure of addressing your concerns with this type of speciality doctor.

 

HTH! Sheryl

 

PS...there are many different types of seizures and only a neurologist is trained to identify.

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I just saw this... I don't keep up with the boards very well.

 

My son has complex partial seizures. He had his first in August at the pool, and we were very lucky that he wasn't in the water when it happened. I actually thought he had hit his head on the side of the pool or something because he lost consciousness. Trip to the ER revealed nothing (EKG, electrolytes).

 

I took him to the ped because I was worried (he has an autism spectrum disorder so anything that might cause him to zone out scares me). The ped recommended an EEG to rule out anything. We went for the EEG and by the time we got home, the neurologist on call had read the EEG and called my ped who had called us a couple of times. Austin was having seizure activity on the EEG, a number of times in the 20 minute EEG.

 

We started meds the next day, which was scary because I hesitate to give even tylenol or motrin and here I was giving him meds that can have liver effects. We saw the neurologist, who is great! Austin had one more complex partial in October, but hasn't had any since. We had to up his meds after that 2nd complex partial, but he is still on a very low dose.

 

The neuro wants him on the meds for a few years, and then we'll try to wean off when it's time to start driving to see if the seizures go away. I think for the general population, the chances of them going away are quite good. I think his autism changes that a bit, but we're praying that since they have responded so well to the meds that we'll be OK. I understand that puberty can be a trigger for a first seizure in children who are prone.

 

I had not noticed any periods of zoning out for a few seconds before that, but even when he was having them during the EEG there was no noticeable change in his behavior. And because of the Aspergers, it's just kind of difficult to really tell what's typical behavior! LOL I will say that his learning has progressed a bit better this year since he's been on the meds, and I wonder if he's been having seizures (not the complex partials where he loses consciousness, but just the simple partials) for awhile and we never knew it. All of his testing he has gone through over the last few years for aspergers has always yielded 'unusual patterns of results'. We sort of joked about it, but it has me wondering. And his processing speed was so low during his IQ testing that it dramatically affected his IQ score.

 

I hope you get some answers... that was the worst part. Not knowing what was going on. I'm doing much better than I was in September and October. I'm not quite so scared anymore.

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