Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

How often does your child have to switch seizure meds?

Posted by   + Show Post

How many times do you think your kids have had to change their seizure meds?

I ask because we went to the doctors the other day and one of the questions asked was what different seizure meds have been tried with my son. I couldn't do anything but stare blankly with my mouth open. I had no clue. I still can't tell you all the seizures meds he's been on. We are constantly switching them trying to find that 'magic' combination. Which is sad because he's not even four years old.

How many times do you think your kids have had to switch meds?

by on Nov. 1, 2008 at 3:37 PM
Replies (21-30):
cornflakegirl3
by Member on Nov. 30, 2010 at 11:50 AM

Well my DD was diagnosed this pat week.  her first seizure was in August and they thought it was from a virus.  She was on Phenobarb and Depakot, which she is allergic to both,  Her seizure where under control with Keppra and Clonazepam, and now they just added Topamax because she had a grand mal seizure which landed her back into the PICU.

I'm hoping this works, she was doing so good before this last episode.  We see the DR on Thursday!

kitkat_08865
by Member on Dec. 15, 2010 at 11:17 AM

Woow i thought i was alone with the continous battle for the right drug or combination. We have been on Phenbarb, carbatrol( two diff types) depakote, zonegran,tranzene, lamictal and after todays visit we add another one... ugh!!

ruthie11617
by Member on Dec. 16, 2010 at 2:38 AM

In one year (first tonic clonic was 11/18/09, but we realize now that he was having absence seizures for a month or so prior...started meds on 12/4/09), we have been on:

* Keppra

* Keppra and Ethosuximide

* Ethosuximide and Lamictal

* Ethosuximide and Zonegran

* Ethosuximide and Topamax

* Ethosuximide and Depakote

And we still don't have them controlled enough. He has averaged anywhere from 20 to over 100 seizures (atypical absence) in a day. We've been on that last combo for three weeks and still increasing the Depakote slowly, but I have yet to see him dip below that 20 a day mark. And unfortunately, he has other issues (PDD-NOS/ADHD/sensory dysfunction possibly, in any combination) that doctors/specialists won't touch with an official diagnosis until his seizures are under control. Meanwhile, we are stuck with no help in dealing with his many issues. It has been the most frustrating year of my life and I have yet to see the light at the end of the tunnel.

            


        

autumnsmom1128
by New Member on Dec. 16, 2010 at 10:01 AM

we have had my daughter on 5 different one and they still don't work. she has been on keppra, vapolric acid, topamax,zanagran, and another i can't remember. she is 3 now and has been having myoclonic and grand mal seizures since she was 2 at least that's when we started recognizing them. i pray that they find a med that works for your son it is an awful thing to watch your child have seizures , i know my daughter has anywhere between 2-4 a day. God bless you and your family dear. 

devtdbosombuddy
by on Dec. 16, 2010 at 8:38 PM

well i dont have kids, BUT i was diagnosed with epilepsy when i was 18 months old and have had 2 brain surgeries.  my meds were changed several times, but to be honest i don't think the doctors were doing it for my own good.  they did it more just to see what worked and what didnt.  i took and still take a form of tegretal.  they tried topamax on me which helped quite a bit with my auras.  and i was on dilantin briefly but it gave me double vision and made me sick.  It like all meds.  there are multiples of every kind, and everyone's different.  you do the math.

devtdbosombuddy
by on Dec. 16, 2010 at 8:40 PM

Have you tried tegretal/carbomeizipine?  that is the only med that has consistantly worked for me and i've been taking it since i was 2.

alyssaravensmom
by on Jan. 6, 2011 at 10:50 PM

we've only tried two so far and neither have worked well.

dsebastian23
by Member on Jan. 6, 2011 at 10:51 PM

He is on his second medicine and thank god seems to be working.

dsebastian23
by Member on Jan. 6, 2011 at 11:02 PM

Hello I seen where you had posted that your son has LGS. My son has epilepsy and in my heart I think he has LGS. His Doctor said his eeg and mri showed it but that his outward signs like walking and talking did not. Im torn with this do you think I need to get a second opinion? What were your sons major signs besides the seizures. My son will be 4 on April 16th he also has multiple type of seizures. Thanks so much! ~Donna

Quoting lacyndarella:

My son has LGS.  Which means often.

He's 3.

He has been on topamax, topamax and keppra, keppra, keppra and depakote, depakote, keppra added again, keppra and zonegran, and now keppra, zonegran, and banzel.  And that is not as many as some people I know.


epilepsy awareness ribbon 20 Questions On Epilepsy

ScreamrInAisle3
by New Member on Jun. 7, 2013 at 4:41 PM

 My daughter was just diagnosed last week so we are on our first medication.  She takes Keppra.  Her "goal dose" is 2 mL 2x a day.  Right now we are at 1 mL 2x a day, working our way up slowly.  I belong to a group on facebook for parents of children with epilepsy, and I have noticed that a lot of kids have to go through several different medications before they find "the right one" so to speak.  With my daughter having Left Temporal Lobe Epilepsy with almost constant Complex Partial and Nocturnal Seizures, I know that sadly we will also be switching around a lot and may never find "the perfect combination". 


Check out my blog!      Follow me on Facebook!                                                       

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)