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Help I am so scared!!
Mon, 07/30/2007 - 23:22Topic: Parents & Caregivers
I had a grand mal seizure 14 years ago when I was 7 months pregnant with my daughter. My seizures started at age 7, that is when I was diagnosed with Epilepsy. Well seven years after I had her she had her first seizure. My seizures are far and few. I may have a seizure twice a year. Growing up I would have a seizure maybe 4 to 5 times a year. Although, my daughter is totally different. She has just about any seizure you can name. They have gotten worse over the past 2 months. She has had 10 seizures just during a routine EEG. Her neurologist said we should watch her during the first 90 minutes when she falls to sleep. She has her moments when she just goes into a daze, you can call her but she does not hear you. I am sorry, I know I am all over the place with this blog I just don't know what to do or how to act around her. I don't want her to feel smothered, because I remember growing up all I wanted was to be Normal! She is an excellent student she has a B average, and will be starting High School this September.
Comments
Re: Re: Help I am so scared!!
Submitted by Nyree412 on Thu, 2007-08-02 - 20:52
My daughter is on Carbatrol. She had a seizure in her sleep last night and I wasn't there. My husband and myself check on her through the night and I still missed being there. I am petrified of SUDEP and I am barely sleeping at night. Now after talking with my daughter I find out that this is not the first one she has had at night. She said she wakes up all the time to find that she has bit the inside of her mouth. What can I do. There is only one thing I can think of and that is we have to share a room. Although, I believe I am scaring the mess out of her just the way I am acting. Thank-you for listening, because I find myself breaking down between being tired, working and raising 3 other kids my brain is exhausted.
Re: Help I am so scared!!
Submitted by txrhb1 on Wed, 2007-08-01 - 00:06
I know this must be very very scary for you. My daughter has had seizures since she was 9 years old - mainly tonic/clonic seizures. She is 24 now, and mother to a beautiful 16 month old baby. Last year, we finally took her to an epileptologist at the local teaching hospital, he made 1 change to her meds, after watching her on a video EEG for a week. She has not had a seizure in 6 months now. We are so grateful for him !! If you have not seen an epileptologist (a neuro who specializes in epilepsy), Iwould highly suggest that you do if at all possible. It was a life changing experience for my daughter. I'm here if you want to talk.
((( hugs ))),
Barbie
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"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo
Re: Help I am so scared!!
Submitted by amydmitchell1973 on Tue, 2007-07-31 - 23:03
That has to be so hard... My daughter also had the seizures that last only seconds but can happen many many times during the day. Is she on medication right now? We tried Depakote and it made her feel horrible and gain weight... so then we tried topamax which worked wonders for her. Although just this past week she had a grand mal seizure which is very new to us. She had been seizure free off of meds for 2 years til this happened. It's so hard and scary to see your kiddos go through things like this.. and you just feel so helpless. I hope that things get better for your daughter and I'm happy to talk if you need someone to spill too...