"judy my daughter was on potiga and after 6 months we got her off it. it made her toxic and she was not herself. now after the new side affects coming out with fda i would not try it again. very scary side affects"
"Small world,.. my daughter also has a speech disorder. We had an iep for it since it was so severe. Then got additional 504 for epilepsy. Personally I would push for iep for his epilepsy so that you can push for assistant to help him.…"
"Darby I am so sorry you are going thru this. I am in the same boat as you. My daughter was 17 when she had her first Tonic Clonic. She was first put on Keppra and she kept having breakthrough seizures so after she was at highest…"
"My daughter started potiga around Christmas. She hasn't told me about the dreams. I'll ask her tonight when she gets out of classes. She loves potiga. We took her off zonzimide to. Add potiga. She felt…"
"My daughter is going to start a new drug over college Christmas break. We are going to remove zonzimide due to memory loss. We will keep vns,limital and vimpat and we are adding new drug Potiga. Anyone have any experience with this new med? From the…"
my daughter had the vns implanted last year.it has been the best. she still has seizures but not the tonic clonics she feels so much more in control. she is almost 19 and she had it implanted about a year ago last month. she did have…"
my daughter was driving a year before her seizures started. she hasnt driven since. dr told us that she will never be able to drive again. at first it was real depressing for her but now she understands it is safer for all if she doesnt…"
I can relate to you. My daughter has intractable generalized epilepsy. She is almost 19 and she was 17 and 1 month when she had her first grand mal. I think the internal seizures started the prior month. My daughter…"
"sheri, go for it. my 18 yr old daughter has intractable generalized epilepsy. She is currently on 3 meds all at the highest doses. She still had break thru seizures. We went for 2nd opinion and they only gave us a 20% chance of it working with her.…"
"Graduate and go to college. Her seizures have been hard to control. Between her meds and grand mals she had a lot of memory loss. We weren't sure she would even graduate. Grades went from a's to c,d,f's. After. 1 1/2 years of med…"
"I agree with Michelle. My Dr told us that zonzimide is not a stand alone drug. Give zonzimide a chance with the keppra. Yes you have to be careful of the "keppra rage" to to help we added a high dose of vitamin B and the rage went away.…"
"My daughter was on keppra first and when that didn't control the seizures they added Zonzimide it helped but didn't fully control the seizures so they added vimpat. That was our miracle 3 drug combo for awhile then we added limital. Then…"
Dorothy, your post was like reading my own biography. My daughter was diagnosed w/ epilepsy 4 days before turning 18, after five years of misdiagnosis by multiple docs.Long story short some medications can have effects on memory. When my daughter was on a certain dose of depakote and lamictal- she started forgetting things alot, she would do her homework and then forget she had done it. She would eat dinner and 2 hours later as what we were having for dinner.
What I am trying to say is it could be how she is metabolizing her meds and not the epilepsy itself. Be firm with your neuro and demand a blood test. My daughter is in the college of her dreams and although her form of epilepsy is lifelong and I worry about 18 hours a day - for the first time in a year I can sleep now, and she is doing well. You can drop me a note via this site anytime you want. Hang in there and God bless