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Is Trileptal Working?

Hi. I'm new to this. My 9 yr old son was diagnosed with Complex Partial Seizures with secondary generalized seizures last July. He had 2 seizures in 2 months and had a 3rd during his EEG. He was put on Trileptal (300 mg 2x day). He was tired/sleepy and is very sensitive to dosage changes. He went 110 days then had a seizure at school. Dr. increased dosage then had to increase again 'cause bloodwork showed first increase didn't get him to a high enough level (started at 10, then moved to 15 but first increase didn't get it to a 15). Doing OK after that but 4 mos later he complained of tingling hands 3 days in a row so Dr. increase meds again. He made it though that adjustment and was good until last week when he had a grand mal at home. Dr. increase meds AGAIN.

He is up to 600 mg in AM and 750 mg in pm (1350 mg/day). That is well into theraputic levels (he weighs just under 70 lbs and has grown around 3 inches this year -- Is all this growing throwing everything off?)

Is this how this goes? Just when I feel like it is working and I can relax something happens. Does anyone have any advise?

Comments

Re: Is Trileptal Working?

Hi Tracey,
Trileptal can causes low sodium for some people. If the sodium gets too low, it will cause seizures. You increasing will cause it to get worse if low sodium is the case.
When my dose of trileptal was increased, it caused more problems. WHen it was finally lowered the sodium problem went away.

I would get blood work every month to keep an eye on it. I really like trileptal for it didnt have many side effects except for the low sodium problem. WHen I started feeling auras I would drink gatorade for a day or two. That would keep my sodium level up.

And with the heat and sweating, I would loose so much sodium in the summertime. SO keep an eye on it even more.
When I would have a generalized seizure, I would go get blood work as soon as possible to see if it was low sodium causing the problem.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Is Trileptal Working?

what are the symptoms of low sodium while on trileptal? jennifer

Re: Re: Re: Is Trileptal Working?

Jennifer,
For me was, shaking of my hand(for I was starting to go into a generalized seizures). Have more complex partials, or many auras.
Or just going into a generalized seizure was my symptoms. Or I would get blood work and it really told the story.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Is Trileptal Working?

Tracy, My daughter was diagnosed with epilepsy in Feb of this year and she is also on Trileptal 2.5 mm in p.m and 2.0 mm in evening, not sure what this is in mg? she has been diong good too. except she had her hand feel shaky a couple of weeks ago so they upped her meds, and checked her level. her level was an 8. so we will see what happenes. If you ever need someone to talk with, feel free to email me. I am like you. I start to relax and something happens. wondering if this will ever stop.

Mom to Lauren age 9,

Re: Re: Is Trileptal Working?

Hi. Thanks for replying. Although I am sorry about your daughter I am happy to know of someone "in the same boat" as me. I hope we both can learn to relax and let our kids jsut be kids...

Tracey

Re: Is Trileptal Working?

Hi

I have simple partial seizures and I started on 300mg x2 as well. It worked for a while then started getting my seizures again. He upped it to 450 at night and stayed the same on the a.m. dose so then I upped the a.m dose to 450 and that didn't work. Then he upped to 600 at night and 450 in the morning and it slowly seems to be working. I'm just wondering how long til it has to be upped again.

It could be the growing thing shaking things up or it could be any of a hundred other things that kids go through in a normal day. I understand how your son feels with the increased dosage as it was making me sleepy and tired too. That is no way for a 9 year old to have to feel. I sure hope it works out for him. Maybe there's something else he could take. Maybe trilipetal just isn't that good.

Anyway, good luck to you both, I hope it gets worked out.