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Topamax, please help!!
Thu, 03/03/2005 - 10:56Topic: 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: RE: RE: Topamax, please help!!
Submitted by AmyQ on Fri, 2005-02-11 - 17:19
Rachel,It sounds like you have a good neurologist. A doctor who hesitates to give kids drugs is a good one (in my opinion)... too many are quick with the implementation of drugs. Also, it sounds like she's "treating the child and not the eeg" (also important).Good luck,AmyQ
RE: Topamax, please help!!
Submitted by rhosgirl on Tue, 2005-03-01 - 09:02
My experience was the same with the drug. I was depressed and cried all the time for awhile but as time went on, I got better. Not to mention as stuck-up or sickening as this seems, it was the best drug for me after I wasn't depressed anymore. I had gained a lot of weight when I was on Depakote and when I was put on Topamax, I lost a lot of that weight and I felt so good about myself. I was taken off of the drug once it stopped working but I felt so good about myself, I almost didn't care despite the fact that I had lost a lot of weight for my body frame. I'm just a 20 yr old who wishes that she was still on that drug for that purpose and I know that is self-centered of me but I had the best time and more energy than I will ever have in my entire life.
RE: RE: Topamax, please help!!
Submitted by blondie1 on Thu, 2005-02-10 - 09:35
Thank you all for your advice and good wishes. I did call my neurologist, and she agreed with my request to wean her off the Topamax. She also doesnt want to try another med unless she has more seizures (remember, she only had one witnessed seizure, one abnormal EEG and one normal EEG). So we are just taking her off the drug and watching and waiting. I feel so bad for those of you who deal with seizures on a regular basis, it must be heartbreaking to see your children! And it's picking the lesser of two evils when it comes to the medicine. Seizures are bad but so many of the meds are too! I am praying so hard that she doesn't have any more. If she does I will be able to come here and cry about it online!
Hugs to you all
Rachel
Thank you all for your advice and good wishes. I did call my neurologist, and she agreed with my request to wean her off the Topamax. She also doesnt want to try another med unless she has more seizures (remember, she only had one witnessed seizure, one abnormal EEG and one normal EEG). So we are just taking her off the drug and watching and waiting. I feel so bad for those of you who deal with seizures on a regular basis, it must be heartbreaking to see your children! And it's picking the lesser of two evils when it comes to the medicine. Seizures are bad but so many of the meds are too! I am praying so hard that she doesn't have any more. If she does I will be able to come here and cry about it online!
Hugs to you all
Rachel