4 yr old daughter dx with absence seizures

[sasasmom]

Hi everyone,
My daughter was recently diagnosed with absance seizures. I also was diagnosed @ age 4 with the same type of seizures. I outgrew them @ age 19. We are now playing the medicine game and let me tell you the side effects scare me to death. They first started her on zarontin which gave her severe stomach pains. They weaned her off of that and wanted to start her on lamictal. Those side affects were worse. So now they want to start her on depakote. Has anyone had these type of experiences? and what was your outcome? I am greatfull that there is a community out there that parents like us have somewhere to turn to and know that we all feel the same way.

thanks
Robin

 

[epileric]

Welcome sasasmom

We've got a lot of moms here so there's definitely a lot of people that see things from your viewpoint.

I honestly believe that your daughter is so lucky to have a mom that would know what it feels like to be in her position, though I guess it's questionable whether it's lucky for you. Your daughter is also lucky to be diagnosed as early as she was. There are so many people here that haven't had their symptoms diagnosed for many years. I was one of the lucky ones though- diagnosed at 3 years old.

I've played the medicine game for almost half a century & still haven't found anything that will control them. Just lessens them though sometimes I wonder how bad they'd be without if what I"m having now is less.

Make yourself at home. You might want to check out "the library" to look things up & "the nursery" to see what other parents have said. No need to re-introduce yourself though just feel comfortable joining the conversation.

 

[Nakamova]

Hi sasasmom, welcome!

The medicine merry-go-round is really tough, isn't it? It's tough to know whether Depakote will be the winner -- everyone is affected differently by AEDs. You can search for info posted about Depakote by using the search tab at the top. You might also want to check out info here about alternatives like neurofeedback and nutritional approaches.

Besrt,
Nakamova

 

[RobinN]

Why not try nutritional approaches before the medical merry-go-round? There has been great success with the Modified Atkins Diet for Seizures. Perhaps there is a hereditary food sensitivity that you both share.

 

[lindinig]

My son is on depakote for his absense seizures. For him, he doesn't experience any side-effects, except a little brain fog. I have been taking him to neurofeedback since June, because he was having a breakthrough seizure, where the post-ictal effect lasted 4-5 days. He was having one every 10 weeks or so. He now hasn't had a seizure in almost 4 months and he's starting to do well in school again. He's still on the depakote. I'm hoping I get to wean him off it.

 

[ian_s]

hmmm my expirience with depakote i hated it.
at the time i was suffering manic episodes and i would get breakthrough mania with depakote.
mania has a lot of similarities with epilepsy .
depakote is also very harsh on the liver i would get jaundiced because the doctors did'nt do the bloodwork it made me feel run down all the time i just hated it, and i took it for years.
but that's only my expirience, it could be different everyone reacts differently to drugs.
the thing about depakote is if it's not at the right level it either damages your liver and has other nasty effects or it does'nt work at all at lower levels.
i took it because the alternative was insanity, stuck between two hard options.

 

[Barb S]

Hi - I am new here - My daughter was dx @ age 4 with Absence (petit mal) and the pediatrician started her on the dose for her weight and age of Zarontin...my Bible group wanted to report me as unfit Mom when my daughter appeared "drunk" out of her mind - the side effects were severe dizziness and falling/staggering which caused her to giggle insanely....upon immediate telephone to Ped. he ordered lower doses to start her gradually and increased slowly to recommended dose...!?!? I was horrified that he did that to us..I was glad my daughter was constantly supervised and had not been crossing streets etc. alone or unheld...
We did Zarontin for a lot of yrs. Ped. ordered blood work every 3 mos. to check her liver condition as well as level of med in bloodstream to assure seizure control ( which EEG dx and we only ever saw 3 sec. spaces of absence)...my daughter absolutely hated the taste of Zarontin so she always drank juice after to wash away aftertaste...
We did try another med. called Valproic acid because her platelat count was too low...once it was up back to Zarontin: caused nausea/up-chucking so new med "Lamictal" tried...it cause side effect of loss of leg control (severe shaking/unable to stand/walk) ... so she is now on "Topiramate" and she is 23 yrs. old living @ home with us on Disabilty in ONT Canada .... she, as a adult,with her Gr. 12 (B's & C's) edn. refuses to work of any sort (priorly worked @ McDonald's) and we tolerate each other now...
Barb S