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Old 09-11-2006, 02:34 PM #1
Kamie
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Kamie
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Default Trileptal?

Zoe started Trileptal 2 weeks ago.

Since then, she has had waking episodes of screaming uncosolably in the middle of the night again.

And she has had acne like a teenager.

She is almost 2. I
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Old 09-11-2006, 05:39 PM #2
jjbeck jjbeck is offline
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Ava is coming off the trileptal THANK GOD! It seemed to have made her more irritable and was not helping w/ seizures. In fact, I question whether it actually contributed to more. One of the things you have to keep trak of with trileptal is sodium levels. Ava's levels decreased with each trileptal increase. Each time she had a seizure, her Sodium levels were lower.
She is now tirtrating with Lamictal. Seems to be better in terms of side effects.
I hope you have good luck with the trileptal.
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Old 09-11-2006, 07:04 PM #3
Jake & Katie's Mom Jake & Katie's Mom is offline
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Katie just started Trileptal a few days ago. She's taking 1ml twice a day for a week. Then 2ml, then 2.5. No problems YET. But you know, she doesn't actually have seizures..... (she's had 3 febrile and her last EEG came back bad) I am really dreading what may happen. The first night I gave it to her, I cried like a baby. the whole time I was giving it and then like an hour after, I just bawled. I really don't want her on it, on anything.
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Old 09-11-2006, 10:34 PM #4
RathyKay RathyKay is offline
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Kamie! So good to see you. I knew your name as soon as I saw it. Just couldn't come up with it on my own. I'm glad to hear everything is going well... except for those seizures, of course. No g-tube! Yay!

Our Trileptal experience doesn't count for a lot. Tom was on Tegretol at the time. His seizures then changed from simple partials to myoclonics. Of course, *I* didn't know they were myoclonics and I didn't describe the changes well over the phone. When increasing Tegretol didn't help, our neuro switched us to Trileptal. Trileptal does NOT treat myoclonics. (I don't think it treats generalized seizures at all.) It seemed like two hours or so after his morning dose of Trileptal, Tom would have some myoclonic jerks. Trileptal was triggering the myoclonics. This didn't go on too long before we got an appointment with our neuro and I acted out the "new" seizure and we switched to a more appropriate drug. Anyway, Trileptal triggered seizures for us. We're not the only ones. LittleJT / Jake (is Amy his mom? See? Your's isn't the only name I've forgotten.) also had seizures triggered by Trileptal. I think they figured it out during a VEEG. They stopped his meds and didn't see any seizures... or something like that.

One other thought on the "acne." My brother is a psychiatrist. When I told him Tom was on Keppra, he wondered why we didn't try Lamictal. I guess he really likes Lamictal for his patients. (And, you do know that a lot of these drugs are used for other purposes? Migraines? Mood stabilizers? etc?) I told him that we were concerned about the rash. Tom has the worst ecxema of my kids... not that it's that bad. Anyway, my brother didn't seem to think the rash was such a big concern. He said there's a rash associated with Tegretol and that doesn't stop people from taking it. You just need to be aware of it and titrate up slowly. I read various people describe Trileptal as the "new, improved" Tegretol. If there's a rash for Tegretol, it makes sense there's one for Trileptal. And, a rash is a sign of an allergic reaction. With Nathaniel needing the hypoallergenic formula, odds are Zoe has her own allergies, so I'd be concerned, too.

(((Hugs))) Seizures suck, and med changes are never fun. (But, I'm so glad to see you again!)
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.
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