Daughter just started Triliptal

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Rory D's Mommy
New Member

Date Joined Feb 2009
Total Posts : 2
   Posted 2/9/2009 10:50 PM (GMT -6)   
Hi I am new here. My daughter has a pretty severe seizure disorder due to loss of oxygen at birth. We got our official Dx of CP and epilepsy at 4mos old in 2003. We went through Pheno/Keppra/Clonopin/ACTH hormone therapy/Zonegran/ Baclofen/Diazepam/ and Ketogenic Diet for past 3 years...whew is that enough? At moment she is 36lbs on 500mg of Keppra, 0.5mg of Clonopin & we just started our latest drug I would allow after researching for months....Trileptal. Since Aurora is not verbal I can only monitor her seizures and sleepiness vs alertness to see how she is feeling. So far, 5 days into initial low dose of 120mg daily we are seeing less daily seizure activity and she seems pretty alert.
I was wondering if any of you wonderful helpful people have been on or have kids on this medication. What are neg. side effects on higher doses?
Pheno was horrible for us...keppra seems to only work so-so...diet was helpful yet not as healthy as we wanted after 3 years on it....my neuro keep talking about VNS too...scares me though for such a little girl of 6. I would appreciate any advice or questions you may have on Ketogenic diet which I am quite informed on and am always willing to share my info. Thanks! Kimberley- Mother to Aurora Dawn,(Light of our lives)

Aurora official dx: Infantile Cerebral Palsy, unspecified Epilepsy, with partial onset/ post myoclonic/ tonic/clonic seizures
we have never yet seen a seizure free day since Infantile spasms hit her at 4months old
we went from 100 seizures daily to about 10 now; still would be nice to have days or dare I wish for weeks in between seizures. Still searching, still praying, still trying to be the best mom I can be...Peace & Light- Kimberley

Regular Member

Date Joined Oct 2008
Total Posts : 103
   Posted 2/20/2009 11:50 AM (GMT -6)   

Hi There,

Cordelia here. I was on Trileptal, and was up to 700mg a day ( I have paroxysmal dyskenisia, a form of dystonia). It worked great, but I had to go off of it because it caused a rash and with me, major depression. Hope this info helps. Best to you.





"In the words of my people, may your life be an oasis surrounded by waving palms, warm breezes and spit-free camels"  Klinger

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