RE: going off seizure med

Gayann - posted on 03/18/2012

My son started having seizures at10 he was on Trileptal for 2 1/2 years...seizure free...starting weening of meds...completely off for 6 months no seizure....now 14....bad news he had a seizure. back to square one..so sad for him....my heart breaks... hopefully he will out grow these stupid seizures.



Sad Mom

Jennifer - posted on 02/16/2011

I don't have experience with going off of meds, so in that respect I cannot give you any advice. However, my daughter who is six has had seizures since she was four months old. Hers started after a reaction to a vaccine. We decided not to medicate because of much research and seeing what it has done to another family member. The medications themselves over time can cause the disorder to get worse. My daugher is now seizure free because we have worked deligently with her diet etc. We see a neurologist every three months because we did decide not to medicate. Every time her report has been good. We do not give her sugar at all except in the form of fruit and some whole grains prepared properly. We give her high doses of fish oil, coconut oil, and grassfed butter. It has worked for us. She has been completely seizure free for over a year now. The seizures started dropping dramaticly after cutting the sugar completely and no eating out unless we know the food is additive free! She is now reading and working on a second grade level of math. If you are thinking about pulling your child off of meds I recommend first starting your child on a good diet emphasising good fats without sugar. That might help the transition. Coming off of meds in the first place can cause seizures because the brain has gotten use to them. My cousin went through this but after the first month he never had a seizure again. However, it takes a no sugar diet at least for a good while.

Jackie - posted on 02/14/2011

Hi Laynette! I got to say that I know how you feel. My daughter was only 6 months old when the doc's thought it was a good time to try and go off of her seziure med. since it is the one that has a lot of development delays added to it and figured it was a good time to try. She started on this med. when she was only 3 days old. Little did they know that she would be seizure free for only a month and a half before being put onto a new med. So, far since they have done that she has been almost seizure free for 2 years now while being on the new medication. Now, I'm waiting to see what happens when we go in for our next follow-up to see if I will be like you nervous and scared once again if they decide to try it again. So, I wish you good luck and prayers too.

Meg - posted on 02/10/2011

My son went off his meds in his first year of highschool-cold turkey- i kept him home from school- the school had to give him a tutor by law- I think he had two breakthrough seizures then went back to school in 2 weeks- He hasn't had a seizure since and he is now 23 years old best thing we could of ever done- He was mainstreamed in almost all classses by his senior year

JEAN NICHOLE - posted on 02/09/2011

Dear Laynette my name is nichole and i have son named noah and he has been on tegretol 3 times a day for the past 8 years and he just recently got weened off his medicine he has done great he hasn't had a seizure since he started his medicine and has not had one since he got weened off just keep close eye on your child let school officials now I now your nervous i was too but if you have faith in your child and yourself you will be fine..

Janina - posted on 01/29/2011

Our oldest was diagnosed with Tonic-Clonic Seizures when he was eight month!
About 18 month later we started to reduce his meds and all was fine! I didn't agree in the first place as I was too scared it'll all start again, but sideeffects were too big!
He's been fine more-less for the last seven years, but doc says, the closer he comes to pubertie the greater the risk again! We'll see!
My youngest has been diagnosed with absence seizures just eight month ago, after we knew something wasn't right with him for the last five years! Very annoying! Finnaly someone put him onto an EEG and the Neurologist was shocked we didn't come earlier (What a joke.... we would've if someone would've believed us!!!!)
Anyway, he won't be off meds for at least the next 15 years, the doc said! Seizures still not under controll, every singel 'uncommon' side effect.... very frustrating!!!!!

Erica - posted on 01/25/2011

Hello laynette my 3yr old daughter is now off meds she was diagnosed at 7 months was on phenobarb for 17 months now shes off the meds and seizure free thank god and i hope she stays that way.

Torey - posted on 11/02/2010

What happened???? Did your son have any more seizures? Is he off meds. Would love to talk. Thank you.

Heather - posted on 03/28/2009

My son has tried being weaned off twice to see if he could cope without medication, he was 11 when diagnosed now 25 and the two attempts were made at perhaps 14 and 18. I don't know what kind of seizures your son has, mine has absence seizures and when his dose was about a quarter the full dose he started having seizures again and so was prescribed the full dose again. After the second time he made the decision not to try to come off again. It is worrying as a mum because if the seizures do start again you don't know when they will, whether they'll be in a place where they could hurt themselves, etc. But on the other hand if your son doesn't try you'll never know whether he could manage without, and he may be able to manage on a reduced dose which should also help to reduce the tiredness.