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Old 05-08-2002, 08:04 PM   #1
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Join Date: May 2002
Location: Ohio
Posts: 92
Beth's Mom HB User
Post Felbatol and Neurontin / Was on Depakote

Hello All!
My first night on this message board. Hoping to learn things that will help our Beth but also to impart anything I have learned in the last 23 yrs. that might be of help to any of you.
Beth was born with brain damage. She had her first seizure at age 4 mo. and was put on Depakote. By the time she reached her mid teens (1994) she was changed to Felbatol. We were at our summer cottage in Michigan and having an awful time with the side effects. She had previously gained too much weight on the Depakote (250 lb.) but in 3 mo. on Felbatol lost over 100 lb. which was too quick...she nearly died...it took 6 mo. of home nursing and a neutritionist to get her back to eating. Eventually we had to introduce some Nuerontin and also Ambian to get her to sleep weeknights when we have to go to work and she goes to a sheltered workshop. Beth has seizures once or twice a week, but twice lately she has had the tonic seizures that drop her cold to the floor causing injury.
We have learned to keep her on a strict schedule with her meds and sleep. She does not have diet pop and we avoid direct sunlight when we suspect seizures coming. She often holds her left wrist before seizures and becomes more difficult and uncooperative...less talkative. She cannot verbalize how she feels, but she does respond when asked if she wants something. She can say a few sentences.
We have a college age son who wants to be a doctor and also find answers for Beth. We have learned that Beth is a true blessing in all our lives. If we are down we only have to be in her company and observe the stress free way that she strings beads or cuts paper to feel we are in the presence of angels. My husband and I have been school teachers for over 2o years each and I think that she has also given us more than the average compassion for our profession. She has been humanizing for our son as well, though he did go through a rough time of wanting to be his own person and the teen hate your parents no matter what they do stuff. Our main goal now is to seek more answers for her and to be as healthy as we can to keep Beth from ending up in a nursing home for as long as we can.
My heart goes out to all of you who in varying degrees are concerned about seizures. With God's help we can all find our answers in our messages on this board.
I pray that you will all form a type of support group here that will be of benefit to all who come.
Please accept me for the genuine concern I have for all of you as well as our family.
Beth's Mom

[This message has been edited by Beth's Mom (edited 05-08-2002).]

 
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Old 05-11-2002, 01:27 AM   #2
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Join Date: Apr 2002
Location: Williams, Az.usa
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Kokopelli HB User
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Hi beths mom,

I did not realize beths problems until I saw this msg.. I am hoping I can help you find some answers hon.. I remember when I was young for the longest time I just wanted to do more research on epilepsy.. I have had both good neuro's and bad.. One dr. who I wish I still had told me to live life to it's fullest I can do nothing but thank him for that. I have done alot that people say epileptics can't do.. Since you are a teacher though promise me one thing watch the kids so many children have petit mals that go unseen by anyone. I was called a daydreamer in school by my teachers, it's simply because they didn't have the knowledge to see this in their students as they were not taught the signs of a seizure disorder in young kids. Anyway, bethangel, she has alot more seizures then I do sounds like it's left her where she relys on mom to do alot for her bless her heart. The first thing I stopped was the cola too and I stopped chocolate as well.. I still have my coffee (shame on me) but I am pretty good most stuff.. I don't drink or do drugs or any of that junk. Theres something I was reading a while back and even ordered a brochure on it. A computer basically that is implanted in your chest (like a pacemaker) and it sends off little shocks through your body I forget what it's called but it sounded real interesting.. I don't want to give you wrong info on it so if you goto epilepsy association of america (i think) something like that.. it will show the device... I'll see if I can find it for you...

Hugs
Koko
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Koko

 
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