Hi Michelle,
Hey, don't be sorry for venting out!!! This is what this group is all about, support! A place to go bounce thoughts off others who can relate to each other.
I was on Dilantin from 1975-1988, at the time was taking it with Phenobarbital. And from 1988-2004 I was on Tegretol and other meds. In 2004 switched from Tegretol to trileptal which have allot of the same ingredients and are still on it.
So, that makes 22 years of so I've been on Tegretol and Trileptal and like I said, allot of the same ingredients. In all these years I put food in my mouth not as a pleasure to taste it, but to but the food in my mouth because that is what you have to do to survive. What I'm trying to say is that I don't eat because of the taste because I don't feel much of a taste. Yea some things like bubbled water I hate the feelings in my mouth (smile), some really spicy food I taste when very strong and won't eat it. But most foods I just put in and swallow because I have to. I'm a very active person in sports so yea I get very hungry so eat because I have to. Or have bananas to give me energy. But I don't eat it because I like the taste.
I also have a friend who is on Trileptal not for epilepsy and also doesn't have much of a taste.
So, if it is the Trileptal, he simply has to understand that, accept it and live with the situation. I don't mean to be hard but if it is Tegretol which is cutting down his seizures he then has to make a choice. He has to think and decide would I rather have little or less taste and have fewer seizures? Or, would I like my taste back more and have more seizures? I would rather eat cardboard if it was healthy and would control my seizures?
If I can help you in anyway, feel free to email me at stephenpales@
Steve
It never affected my weight. All my life I was a twig, so really couldn't have lost any more weight.
You mentioned
--- In epilepsy@yahoogroup
>
> I can tell that you are scared and have every right to be. Have you thought
> that the undesired medication might be stored in the body's fat stores. The
> fact that your son won't eat and is burning the fat with the undesired
> medication stored in it might be a factor. I know I hated it when Julia was
> on steroids and Iknow that is stored in the fat.
>
> Wendy
>
> On Sun, Jan 31, 2010 at 8:57 PM, mlauchner <oldstuff4me@
>
> >
> >
> > 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
> >
> >
> >
>
>
> [Non-text portions of this message have been removed]
>
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