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Topamax, please help!!

Thu, 03/03/2005 - 10:56
Topic: Medication Issues
I have just started my daughter on Topomax for newly diagnosed "Generalized Epilepsy". Some of you may remember me---she had one seizure at home and an abnormal EEG in the ER that day. A repeat EEG (sleep deprived) a week later was normal, but the neuro told me she thinks my daughter is at high risk (75%) for more seizures. So reluctantly we put her on the Topamax. It has been a week and a half, and she is only taking half of her full dose because we are titrating her up. But I notice such a big change in her. She is sleepy, seems depressed, normally she is a bright cheery ray of sunshine, but not now. She cries at the drop of a hat. And I got a note from her teacher that she is not following oral directions well, seems tired, and is having trouble gettting her assignments in on time (before she was a straight A student and no trouble at all).The info on Topamax from my MD says these side effects are only temporarywith the inituatuib if treatment and usually go away. But I want the truth from you all. Is it true? Is it just temporary? Every fiber of me wants to stop the meds and get my little girl back. She just had one seizure. Maybe she will never have another one. I know a lot of kids have problems in school before being medicated, but what about after? This is just what I was afraid of, my little girl becoming someone else, someone unhappy, someone having problems in school.Please tell me your experiences. Right now, I would risk her having another seizure rather than see her like this. I can't take it. Let me know if it gets better please!Thank youRachel

Comments

RE: Topamax, please help!!

Submitted by wrless on Thu, 2005-02-10 - 04:59

Hi,

I feel for you.  We are new to epilepsy, too.  My 8yr. old son had an abnormal EEG Dec. 28.  The effect you descibed happened to him on Trileptol.  It was a nightmare.  My husband insisted we try it for 3 weeks.  During that time my son (also autistic) became nonfuctional and is no longer at grade level in school. 

We told the neurologist after the 3 weeks and I requested we switch to Lamictal based on my research.  We are in our second week of that and so far so good.

How long has your daughter been on the Topamax?  Have you contacted your neurologist?  From what I've read you may have to try a number of different drugs before you find the right one.   I say trust your mother's instinct and see if you can switch now.  You need to check with the dr. before you stop the med, there may be a weaning process, even after a short time.

Good luck.  I'm sure with the right med your daughter will come back.  My son is on his way back and I am so relieved and happy. 

Susan

Hi,

I feel for you.  We are new to epilepsy, too.  My 8yr. old son had an abnormal EEG Dec. 28.  The effect you descibed happened to him on Trileptol.  It was a nightmare.  My husband insisted we try it for 3 weeks.  During that time my son (also autistic) became nonfuctional and is no longer at grade level in school. 

We told the neurologist after the 3 weeks and I requested we switch to Lamictal based on my research.  We are in our second week of that and so far so good.

How long has your daughter been on the Topamax?  Have you contacted your neurologist?  From what I've read you may have to try a number of different drugs before you find the right one.   I say trust your mother's instinct and see if you can switch now.  You need to check with the dr. before you stop the med, there may be a weaning process, even after a short time.

Good luck.  I'm sure with the right med your daughter will come back.  My son is on his way back and I am so relieved and happy. 

Susan

RE: RE: Topamax, please help!!

Submitted by mom1tex on Thu, 2005-02-10 - 05:57

Hello! Sorry to hear all your problems. I can truely relate to them. My name is Tina. My daughter, Jessica is 7 yrs old. She started having seizures in 2000. She has been on so many meds since then. She was on Topamax about a yr ago. She was on it for almost 2 yrs. She still had seizures so they up it and finally change to something else. It worked ok for a while than just stopped I guess. She has seizures 24/7 anyway so I don't know if anything will ever help stop them completely! Keep your head up and keep trying!!

Good luck and you all are in our prayers,

Tina and Jessica

Hello! Sorry to hear all your problems. I can truely relate to them. My name is Tina. My daughter, Jessica is 7 yrs old. She started having seizures in 2000. She has been on so many meds since then. She was on Topamax about a yr ago. She was on it for almost 2 yrs. She still had seizures so they up it and finally change to something else. It worked ok for a while than just stopped I guess. She has seizures 24/7 anyway so I don't know if anything will ever help stop them completely! Keep your head up and keep trying!!

Good luck and you all are in our prayers,

Tina and Jessica

RE: Topamax, please help!!

Submitted by robpatti on Thu, 2005-02-10 - 08:33
HI, My son is on topamax(200mg) and topamax(150mg and 100mg) and he is on keppra (1500mg )two times aday. Just give it a try of that doesn't work just call the doctor and tell them what is going on with her. My son is down to a surzure 1 to 3 times a month. They told me to give it a month to really help and it is helping him. He's been on so many meds and this is the only ones that well work for him. You may have to try other meds to find the one that really works. But you said that she only had the one surzure I would have more tests done. My son had a grandmal surzure and he had it for 3 days start. He was in a coma for 15 days. And now he has brain damage and is in a wheelchair please have more tests done just is see how bad thay are. You are they boss you tell them that you went more tests done. She may not need to be one any meds at all. Just be safe and find out and have tests done. Patt.

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