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Tegretol - loving the "side effects"

Posted by on Jan. 3, 2010 at 2:57 PM
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After a lot of insisting that something "just wasn't right" I convinced my neurologist to run a 24hr EEG on my 3yr old.  He didn't want to because he said short, infrequent seizures do not harm the brain and the side effects of the medications are multiple therefore he was very conservative wtih meds.  But he agreed to do one to "allieve YOUR anxiety"

Turns out he was having frequent seizures.  Both day and night.  They put him on Tegretol and warned me of all the side effects and said they would be better by a week or two.

The only side effects I have noticed and noticed right away is a much INCREASED attention span!  The ability to listen (better) pick up toys (better) and sit still in a chair during dinner (impossible before -too "squirmy")   I think this is because he is actually getting a full nights sleep seizure free and thus can concentrate!

They said he was having complex partial seizures.  After reading about complex partial seizures these "fits" on wandering around, bumping into things, "not listening", not being able to keep his hands to himself because he was was always PICKING at things..... not the behavioral problem I was concerned about!!!! but rather the seizure.

The Neurologist diansosed him wtih ADHD and wanted him treated.  He didn't think he was having seizures because he wasn't sleepy afterwards.  

Anyone else have this experience - not sleepy after seizures?

Also anyone else on Tegretol?  How often do you see the Neuro and/or have blood work done?  His next appointment isn't until April!  I told them that was too long!  The nurse agreed and said it was probabley overlooked.  What happens when the Mom isn't on top of all this???

 

by on Jan. 3, 2010 at 2:57 PM
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Replies (1-10):
LIZARD66
by Group Owner on Jan. 3, 2010 at 5:56 PM

One or two simple partial szs didn't really affect me, but I would typically have them in large clusters which left me unable to get out of bed. Tegretol was rat poison to me, and I will NEVER take it again, but one person's rat poison is another's miracle pill.

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

SarahBethK
by on Jan. 4, 2010 at 12:21 PM

That is a great side effect!

happy2bmommy937
by Member on Jan. 4, 2010 at 11:17 PM


Quoting LIZARD66:

One or two simple partial szs didn't really affect me, but I would typically have them in large clusters which left me unable to get out of bed. Tegretol was rat poison to me, and I will NEVER take it again, but one person's rat poison is another's miracle pill.

LIZARD :)


Wow.  That's crazy how it works so differently in different people.  I feel very greatful and blessed to (hopefully) have found something so quickly!  Did you react badly right away?

LIZARD66
by Group Owner on Jan. 5, 2010 at 7:31 AM


Quoting happy2bmommy937:

 

Quoting LIZARD66:

One or two simple partial szs didn't really affect me, but I would typically have them in large clusters which left me unable to get out of bed. Tegretol was rat poison to me, and I will NEVER take it again, but one person's rat poison is another's miracle pill.

LIZARD :)


Did you react badly right away?

I think I did. I was weaned off phenobarbital (which was giving me problems because I was still "getting used to it" and had to take exams, so I didn't have six weeks to sit and be stoned and stupid. When I think back, there was a steady stream of side effects that just blurred into each other as I made the switch, so it was basically constant for about 3 years, but once I withdrew from it, in a matter of days, I noticed I had my brain and body back. :)

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

laceybug0602
by New Member on Jan. 11, 2010 at 7:16 PM

my son has had seizure   since he was 15 months old he is 4 know.and he is also on tegretol but he's not talking and i cant get him to potty train. there wanting to do a 24 hour eeg on him but i dont think that he will sit still long enough to do it

happy2bmommy937
by Member on Jan. 13, 2010 at 11:40 PM


Quoting laceybug0602:

my son has had seizure   since he was 15 months old he is 4 know.and he is also on tegretol but he's not talking and i cant get him to potty train. there wanting to do a 24 hour eeg on him but i dont think that he will sit still long enough to do it


I had the same fear but it worked out.  That day I made it a day just for him and kept him occupied the whole day.  I slept on an air matress to be sure he wouldn't rip it off but he was so exhausted that he slept like a rock!  It was an exhausting day for me but well worth knowing exactly what was going on.  I'd give it a try.

ocean10844
by New Member on Jan. 21, 2010 at 6:29 PM

I'm glad you are ok, with the side effects, my son was on Tegretol, and he was just able to get off, of it. He "out grew" his seizures..anyhow, watch his teeth. Due to the medicine, my son has the worst, stained out teeth, the dentist and dr. said it can cause that. My poor son, has just awful teeth, he is embarressed by it, we are gonna look into teeth whitening

happy2bmommy937
by Member on Jan. 22, 2010 at 9:45 AM


Quoting ocean10844:

I'm glad you are ok, with the side effects, my son was on Tegretol, and he was just able to get off, of it. He "out grew" his seizures..anyhow, watch his teeth. Due to the medicine, my son has the worst, stained out teeth, the dentist and dr. said it can cause that. My poor son, has just awful teeth, he is embarressed by it, we are gonna look into teeth whitening

Thanks!   I didn't realize that.  That med has SO many potential side effects!

billiejo79
by New Member on Feb. 6, 2010 at 9:49 PM

My oldest daughter who will be 8 in 20days was diagnosed with Atonic seizures in 2004 at the age of 2.5. She has never been sleepy after having a seizure. She even had 14 in one day and wasn't tired.

LIZARD66
by Group Owner on Feb. 7, 2010 at 8:35 AM


Quoting billiejo79:

My oldest daughter who will be 8 in 20days was diagnosed with Atonic seizures in 2004 at the age of 2.5. She has never been sleepy after having a seizure. She even had 14 in one day and wasn't tired.


Atonics generally don't make you tired. They occur when there is sudden lightheadedness and "spaghetti legs," but consciousness isn't usually disturbed, so there is no after-effect, as there would be with a more significant generlized sz.

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

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