Post by Amy Lombardi on Apr 24, 2009 15:58:39 GMT -5
Subject: breaking through zonegran
Posted by: lincldad
Mar 13th, 2009 - 3:34 AM
We've skated by for many years on zonegran, however I think we are breaking through. My daughter's seizure activity begins roughly 4-6 hrs between doses. I am currently adjusting the timing, it seems to progress worse as the day goes on (does that sound about right?). No problems through the night. I am waiting for her regular neuro to get back from vacation to push things further, also if I can control it by adjusting timing, all the better.
Here's the question: After zonegran has run its course, what is the next med? Currently we are on 450mg zonegran. Of course there are a thingytail of other drugs, but I have pinned the problem to this one, I hope. Any comments?
LINCL F 10 non-ambulatory
laura butenhoff
Mar 13th, 2009 - 4:01 AM
Depakote (valproic acid)worked best for our son late infantile.
nvigil
Mar 13th, 2009 - 6:19 AM
My daughther has LINCL as well, though she is much younger than your daughter. She will be six in May. We have been on a combo of Topamax, Keppra and Klonopin for quite a while now with pretty good success. We struggle with the myoclonic activity, but she hasn't had a bigger break through seizure since early September and it was May before that.
Lincldad
Mar 13th, 2009 - 6:42 AM
Topomax, I'll be that's the one I'm thinking of.
Currently our thingytail consists of Zonegran, Baclofen, clonopen, depakote valproic acid (i'm sure I didn't spell a one of those correctly).
We've just about topped out on all of them, so I'm sure we'll be changing at least one or more with this episode.
Thanks.
katarina Calderon
Mar 13th, 2009 - 6:47 AM
we had a combo of topamax and keppra which worked well for years...........
Tami
Mar 13th, 2009 - 1:17 PM
We had Brittni on Depakote and Zonegran for years, we didn't want to keep increasing the Depakote, so we took her off of the Zonegran and put her on Topamax. The combo has been working well, with the occasional break thru sezuires. We have had to increase the Topamax a few times.
Dawn Collins
Mar 13th, 2009 - 5:30 PM
My daughter, Becca, is nine with Infantile. She's been on Depakote(Valproic Acid) and Topamax for a few years. She hasn't had a seizure in two years.
Pat
Mar 17th, 2009 - 10:56 AM
My daughter is 16 (JNCL), so it's a bit different, but we found that depakote made her gain 40 pounds; the Topamax made her "lose" her words; and Lamictal gave her a bad allergic reaction that put her in the hospital;zonegran made her walk crooked. Currently she is only on Ativan and Risperdal, which I am thankful for. Although she is mostly wheelchair bound, she does still get up several times a day to walk to the bathroom, and at school she takes long walks with her teacher, always with lots of hand-holding support.
I have always tried to give her the least amount of medication necessary to help her get through her day. While she is still cognizant, I don't want her "doped up", I want her to have full participation in the family and at school. Though it's very hard to understand her, she has made a huge impact on the people at her school, teachers and students alike. It's just amazing to me!
Every parent has to decide which is best for their children; I feel as long as they are happy, or as happy as they can be, and not seizing all the time, then you're doing your job.
Good luck!
Posted by: lincldad
Mar 13th, 2009 - 3:34 AM
We've skated by for many years on zonegran, however I think we are breaking through. My daughter's seizure activity begins roughly 4-6 hrs between doses. I am currently adjusting the timing, it seems to progress worse as the day goes on (does that sound about right?). No problems through the night. I am waiting for her regular neuro to get back from vacation to push things further, also if I can control it by adjusting timing, all the better.
Here's the question: After zonegran has run its course, what is the next med? Currently we are on 450mg zonegran. Of course there are a thingytail of other drugs, but I have pinned the problem to this one, I hope. Any comments?
LINCL F 10 non-ambulatory
laura butenhoff
Mar 13th, 2009 - 4:01 AM
Depakote (valproic acid)worked best for our son late infantile.
nvigil
Mar 13th, 2009 - 6:19 AM
My daughther has LINCL as well, though she is much younger than your daughter. She will be six in May. We have been on a combo of Topamax, Keppra and Klonopin for quite a while now with pretty good success. We struggle with the myoclonic activity, but she hasn't had a bigger break through seizure since early September and it was May before that.
Lincldad
Mar 13th, 2009 - 6:42 AM
Topomax, I'll be that's the one I'm thinking of.
Currently our thingytail consists of Zonegran, Baclofen, clonopen, depakote valproic acid (i'm sure I didn't spell a one of those correctly).
We've just about topped out on all of them, so I'm sure we'll be changing at least one or more with this episode.
Thanks.
katarina Calderon
Mar 13th, 2009 - 6:47 AM
we had a combo of topamax and keppra which worked well for years...........
Tami
Mar 13th, 2009 - 1:17 PM
We had Brittni on Depakote and Zonegran for years, we didn't want to keep increasing the Depakote, so we took her off of the Zonegran and put her on Topamax. The combo has been working well, with the occasional break thru sezuires. We have had to increase the Topamax a few times.
Dawn Collins
Mar 13th, 2009 - 5:30 PM
My daughter, Becca, is nine with Infantile. She's been on Depakote(Valproic Acid) and Topamax for a few years. She hasn't had a seizure in two years.
Pat
Mar 17th, 2009 - 10:56 AM
My daughter is 16 (JNCL), so it's a bit different, but we found that depakote made her gain 40 pounds; the Topamax made her "lose" her words; and Lamictal gave her a bad allergic reaction that put her in the hospital;zonegran made her walk crooked. Currently she is only on Ativan and Risperdal, which I am thankful for. Although she is mostly wheelchair bound, she does still get up several times a day to walk to the bathroom, and at school she takes long walks with her teacher, always with lots of hand-holding support.
I have always tried to give her the least amount of medication necessary to help her get through her day. While she is still cognizant, I don't want her "doped up", I want her to have full participation in the family and at school. Though it's very hard to understand her, she has made a huge impact on the people at her school, teachers and students alike. It's just amazing to me!
Every parent has to decide which is best for their children; I feel as long as they are happy, or as happy as they can be, and not seizing all the time, then you're doing your job.
Good luck!