Michele,
My first szs were when I was carrying my 2nd and 3rd daughters. But I wasn't diagnosed until I was 30. I then had 3 daughters 2,4, and 6 plus a husband --now ex--. That was 48 years ago.
I have been on Dilantin and Phenabarb for over 20 years and am fairly well controlled. My last sz was over 2 years ago and before that it was 4 years.
I have never had problems with appetite.-- wish I did. But I don't think it is the med that makes me gain weight. It is because I was eating the wrong things-- that put in more calories than what I was working off.
Since January I have really been trying to eat the right things and eat smaller portions. I haven't lost a lot but enough that I want to keep on.
Do you listen to Dr. Oz? I am trying to follow his suggestions. I haven't gotten to walking 10,000 steps a day yet but I am working on it.
It is difficult with a son his age. But what he eats is
one thing he can control. That is what I read about eating disorders.
Millie
----- Original Message -----
From: mlauchner
To: epilepsy@yahoogroup
Sent: Sunday, January 31, 2010 8:57 PM
Subject: [epilepsy] I'm baffled
Not quite sure where to begin. I'd like to hear from parents of "older" children, ie over 20. And maybe from those who have been where my son is now. And for that matter, anybody who might be able to impart wisdom. So I guess this is to everybody.
My son (Aaron) will be 23 next month. The meds he's currently taking are Lamictal, Tegretol and Dilantin, which was added only about 4 weeks ago, which replaced Depakote. Some months ago the third med in the trio that he tried was Vimpat. It was not very effective and caused significant loss of appetite and consequently weight loss as well. At that time, the weight loss was actually a welcomed side effect since he was about 217 then and was not happy at all with his appearance. Then Vimpat was replaced with Banzel, which caused further weight loss and still not effective seizure control. December was a record seizure month for him at 18 or 19. We was not liking the loss of appetite, which did subside somewhat, but was really "digging" the weight loss. His "fat" pants were falling down around his ankles and he was pretty jazzed. He said he never ever wanted to weigh that much again and had set a target weight for himself of between 180 and 185 which is what he weighed when he graduated in 2005.
When we saw his neuro Jan 4, she was of course quite surprised by the amount of weight he had lost and told him then that he needed to not lose anymore weight. She weighed him that day and he weighed 167. I was shocked. That same day we began titrating off the Banzel and onto the Dilantin (300 mg/day). The Dilantin actually seems to be doing something positive since he only had 1 seizure last week! On Jan 18 he went in for labs to check levels and it came back showing he was quite low on all 3 drugs. Weird. During the time of getting on the Dilantin he has still not been able/willing to eat much. The Dilantin was increased to 400 mg/day.
As of this morning, my son weighs 158. I am within inches of freaking out. He just won't eat. Can't eat? Is it possible that the Banzel left behind an unwanted side effect or is it long gone from his system and we're dealing with something completely unrelated? He is somewhat immature for his age and would rather spend his money on games/movies than food. But now it's getting ridiculous. It's almost as if his ability or desire for survival has gone out the window! He's wanting to buy a PS3 on Wed so he has flat out refused to purchase any food for himself, expecting me to do that for him.
Has anyone here who takes or has taken Dilantin in the past, had it affect appetite? I have read lots of stuff about Dilantin and loss of appetite wasn't on the list. I am at whit's end. I have tried to talk to him about this and told him that maybe he needs to see the doc to rule out anything more sinister, but he flat out refuses. What can I do? He's an adult. I can't force him!
Sorry for unloading all of this in such a loooooong post. I just figured that someone here may have some insight. There are so many knowledgeable folks here. Any wisdom anyone can offer will be greatly appreciate. Thanks and God bless!
Michelle
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