absence/petit mal- to treat or not to treat?

[sncmom]

Hi all,
I'm actually writing this for a friend whose otherwise healthy 2-yr-old was just dx'd with petit mal szs. Their neuro has rec'd medication. I have seen that several mamas on here do not treat absence szs and I was wondering why or if you have any books or websites I could point her to.
Thanks,
Rachel

[Lilypie32]

My son has absence seizures. His neurologist advised not using medication as the side effects were more dangerous than the benefits at this point. He is having seizures a few times per day.

[heatherdeg]

We only opted not to treat because a 48 (or 72?) hour EEG didn't show any activity and we had a really hard time medicating with it not showing up. Of course, they made it really clear that the next one could leave him in bad shape, but we really have a hard time with medication--especially with no solid evidence to back up the need. We had captured the absence seizures on film and he'd had one obvious seizure prior, but nothing else.

If the EEG had shown activity, I'm not sure we'd have made the same choice. Ds was 2yo at the time.

[dbsam]

My answer may not help your friend; I'm not sure there is a clear cut answer about medicating for seizures.

We medicate my daughter's seizures. She has focal seizures that turn into generalized seizures. The seizures, usually not visible, sometimes result in trembling or 'spacing out'. I did not want to medicate. She had them for a couple of years without diagnosis (There were no developmental delays so the ped did not believe she was having seizures. I eventually demanded an EEG to make sure. Her one hour and 48 hour EEG's showed tons of seizure activity day and night.) The neuro's had many reasons we should medicate - most of which were not sufficient for me. But then they told me left untreated seizures often increase in frequency and intensity and can cause permanent damage or death. So I agreed to the Depakote. My daughter is 5.5yo and has been on the meds for almost three years. I am more afraid of the side effects of the drugs than the seizures; but am also nervous about taking her off the meds. We are planning/hoping to start weaning her off the meds in April but we need a neuro's help to take her off the meds. We've seen four neuros and all felt she s/b medicated. (lilypie32...where is your neuro...I'd like to take my daughter to see him/her.)

[Lilypie32]

MY son goes to Dr. Parrish Winesett in St. Petersburg, Florida. He is at All Childrens Hospital. He is very nice and will sit and talk with you about your concerns, etc.

[dbsam]

Originally Posted by Lilypie32

MY son goes to Dr. Parrish Winesett in St. Petersburg, Florida. He is at All Childrens Hospital. He is very nice and will sit and talk with you about your concerns, etc.

Thank you. I will call Dr. Parrish for an appt. Although we live in IN, our first two neuros were in Chicago, our current neuro in Minnesota, and the wonderful neuro specializing in one of my son's conditions is in Detroit. I will travel to find good doctors - and in our experience, it is rare to find a neurologist who doesn't jump to meds. (I should add, my daughter's last two short EEG's were clean so we feel more comfortable taking her off the meds.)

Sorry OP, for getting OT.

[theretohere]

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Edited by theretohere - 1/23/12 at 5:38pm