Neonatal seizures

Raewyn - posted on 12/28/2008 ( 2 moms have responded )

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My 17month old baby developed seizures at 6 days of age. They continued up to 3 x daily (total of 60+ seizures) until he was finally put onto Epilim. They have been well controlled but he outgrew the dose range at about 8 months and he needed his dose increased. Since then he is again outgrowing the dose range but at the moment is seizure free. We are hoping he will remain seizure free and be able to come off the medication. In addition to the seizures he has global developmental delay and at 17 months is unable to sit, crawl, walk or talk. We are hoping some? of this developmental delay may be a side effect of the Epilim but as yet after EEG, MRI, csf tap and numerous blood tests and urinalysis the doctors are unable to explain why he has seizures or developmental delay. Does anyone have a child with similar problems? Or has been on Epilim and done alot better once they were off it? Thanks

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Raewyn - posted on 01/05/2009

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Hi, thanks for your reply. I'm just back from the hospital - a routine appointment. The doctors aren't all that positive about his progress, since his problems are such an unknown - as alot of seizure processes are, I am told. They want us to wait for a few more tests before decreasing his Epilim. It will be interesting to hear how your little one does. Lots of people (including our neurodevelopmental therapist) say they do alot better off it. We still have hope. Keep in touch. Thanks

Kelly - posted on 01/03/2009

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hi my daughter is on the same medication has been for two years now,she was a bit behind for her age when she started on her meds but they said it was down to being ill and b4 they found out it was epilespy but as soon as she started on the epilim and it got in her system she has now cought up and in some ways in front for her age but as from now they are now starting to lower her meds to see if she has outgrown the epilepsy or the meds are doing there job but am so worried she will go backwards again it would be great to keep in touch so i can keep you updated on her progress and compare,as they gotta lower it slowly thanks x

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