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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: Re: Help I am so scared!!
Submitted by jacksmom on Thu, 2007-08-02 - 22:42
I just saw your comments about an Epileptologist. It is hard to find, and they are usually under neurologist. If you check your local hospitals and see if they have a neurology dept. Then you can call and see if they have any neurologist who specialize in epilepsy. I also had trouble looking them up and had someone refer me to one.
I think I have read about some people on this site that live in the New Jersey area that are seeing an epi specialist. Maybe they will see this and respond.
Good luck and I hope your daughter has seizure free days ahead!
Take care,
Sheri (Jacks mom)
Re: Re: Re: Re: Help I am so scared!!
Submitted by Nyree412 on Tue, 2007-08-07 - 20:07
Well I found an Epileptologist. We had our first appointment today. The doctors name is Lorraine Lazar. I really like her. She took up the time to explain everything and also set up our plan of action. The first thing we are going to do is the Video EEG. She said they will watch her between 3-5 days. She is going to reduce the medication to see exactly what part of the brain is actually affected. This way she will be able to take her off of the Carbatrol and put her on something else. I feel so much better after talking to her she let me know that there is HOPE and this is not the end, only the beginning there is so much that can be done.
Re: Re: Help I am so scared!!
Submitted by Nyree412 on Thu, 2007-08-02 - 21:00
After I saw your advice to find an Epileptologist, I started looking. It is really hard to find one. I even called Cigna, they said they don't have any listing for that type of doctor. I did a search on the internet and they don't specify Epileptogist. Where would be a good place to look? We reside in Central New Jersey. My daughter goes to see her Neurologist tomorrow after she gets more blood work done. I really have to find someone who is going to help us. I can't continue to take days off from work all the time because of doctor's appointments without loosing my job, and we can't afford that. So we really have to try to get this under some type of control.