Meds not working... opinions on Topamax?

[Staceypt]

Hi

I'm frustrated - and I know seizure meds take a while to get straightened out, but it is still frustrating. My son was diagnosed a few months ago with absence seizures and starting taking Keppra. Didn't work - seizures got worse, they added Trileptal - and they decided he was really having partial seizures (originating in Frontal lobe) not absence seizures. (MRI negative) Got to 4ml of Trileptal twice a day - still seeing seizures. Got to 7ml twice a day - my son (almost 8 y.o) started c/o headaches and "not feeling well". Did stat bloodwork - so far everything has come back ok (still waiting on thyroid and keppra/trileptal levels). We have an neuro appt tomorrow and I believe (from e-mailing with the neuro) that she is going to put him on Topamax tomorrow and get rid of the Trileptal.

Anyone use Topamax for their kids? Any side effects I should know about? I'm a mess about these seizures. I know they aren't hurting him and he doesn't even know he is having them, but I hate to see him seize. He had 6 in one hour at karate class tonight, 5 in 15 minutes of homework. It breaks my heart. And I'm so worried he is going to get hurt on the stairs or something. I wish we could just find a med that works for him already.

Thanks for listening - any advice/etc appreciated.

We are seeing our neuro at 10:15 tomorrow morning... curious to see what her plan is.

Thanks
Stacey

 

[BensalemAngler]

It is a scary and frustrating time. My son who is 8 now started when he was 2. We spent 6 months first on tregratal uping it like every 2 weeks because it was not working, then spent time on trileptal which worked but he had break throughs whenever he was sick. At that time we were at St. Chris in Philly. We hated our dr. He never listened to us and never looked at our journal or anything. But that is another story.

In December of that same year (2006) we were switched to Depakote. (The medicine that CHOP in philly said we should be on when we went for a second opinion) and the SZ stopped (NO JINX). We switched drs. to CHOP after 2 and half years came off the meds and he had another SZ, so we went back on and this summer we will be trying again to come off.

My only advise and comment are, be happy with your dr. do not want to change if you are unhappy or just a gut feeling and two we spent 6 months of SZ and uncertainty then out of no where a med worked. All in due time.

Luck today, be strong and on a side note I grew up in Runnemede spending many days at Clementon park.

 

[Staceypt]

Thank you for your response Runnemede is right around the corner - small world!

Who do you see at CHOP? We are at CNNH (Center for Neurological and Neurobehavioral Health) in Voorhees for our neurologist - we started there initially b/c my son has an autism diagnosis as well (PDD-NOS) and have stuck with her through these seizures. Our neurologist is wonderful - listens to us, returns my calls and e-mails very quickly. I am hoping we will find something that works sooner or later.

Thanks again

 

[Nakamova]

Stacey -- below are some CWE threads about Topomax that may be of interest:

http://www.coping-with-epilepsy.com/forums/f42/topamax-8yr-old-15333/
http://www.coping-with-epilepsy.com/forums/f20/topamax-emotions-15332/
http://www.coping-with-epilepsy.com/forums/f23/so-any-good-stories-about-topamax-14649/
http://www.coping-with-epilepsy.com/forums/f23/horrendous-eyelid-twitching-since-topamax-12300/

 

[Staceypt]

Thanks!

She decided not to put him on Topamax just yet. He is also autistic and she was worried of the dopiness, word finding difficulties that come with it. So we are trying Lamictal. We'll see how that goes. Now I'm off to research that one....

 

[acpollard2010]

i have been on lamictal along time just memory problems for me and slight convulsions and getting sick and i don't like topaqmax even though i have to take it to