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I can't believe I'm here, but I am (Absence Seizures)
Tue, 06/26/2007 - 19:39Topic: Parents & Caregivers
My daughter has just been diagnosed with something, I don't know for sure yet but assume it's absence seizures. She's 4.5 yrs old.
Right after diagnosis on Friday the neurologist went on vacation so I won't hear the actual term until July 10th but she seems text book absence with multiple seizures during her EEG.
She started on Topamax on Saturday and was taken off today due to bad side effects. We start on Zonagran tomorrow. I am so saddened by the side effects I've seen so far and am not hopeful at all at the moment.
Has anyone decided not to medicate? I am so anxious to find the pro's and con's and learn all about this. Because I don't understand how the seizures are affecting her, It's hard to see why medication is necessary. But as I said, I am new to this and will learn a lot I'm sure in the near future.
Susan
Comments
Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I can't believe I'm here
Submitted by Boomers Mom on Tue, 2007-11-06 - 13:37
This is my first time replying on the site. My son is 18 today and he was diagnosed 15 years ago last week. He has run the spectrum of medications. Currently he is taking Lamictal and Zonegran. We have run into our share of side effects over the last 15 years. He actually still has numerous baby teeth because the Dilantin caused his gums to grow over his teeth. We waited a long time before we were diagnosed because we too believed that he was just ignoring us. As it turns out he can hear during his seizures. He just can't speak to us. He is now seizure free but not completely aura free. He finally got his driver's permit a few months ago. Now we are receiving acceptance letters to colleges. 18 years later and I'm still scared to death. His auras are very prominent and I know that he could get to the side of the road but it still worries me. I worry about him going off to college and having a drink. I worry about him not getting enough sleep. He too has always had a seizure before getting sick. It is very scary. We have been on medications that have caused him to be sleepy, fuzzy and not be able to speak. He has been on these medications now for 2 years and this has been a great combination. He is an A/B student who is in the top 100 of his class. The best advice that I can tell all the new parents is to keep a copybook of all the information that the doctor tells you. Write down every appointment, every change in medication, every thing that surrounds a seizure, every test and every change that the doctor tells you about. It makes life a lot easier.
Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: I can't believe I'm here
Submitted by bernardcwe on Wed, 2007-10-17 - 11:01
My wife used to have multiple daily absence seizures as an adult. She hasn't had any in over a decade now since she finished 5-6 months of EEG neurofeedback sessions. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Check out my chart of alternative epilepsy treatments.