should my son come off epilepsy drugs?

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Hello, my son (now age 6) was diagnosed with epilepsy 2 and half years ago, with focal seizures, he was having up to 50 in a 24 hour period. His character completely changed too, he turned very hyperactive and aggressive. 

Within 10 days of his medication (carbamazpine 5ml twice daily) he never had another. Our consultant is insisting it is normal to take him off the medication after being free of seizures after 2 years. I managed to persuade him to let him stay on it a little longer as his father was going through cancer treatment and I didn't need extra worry. Next appointment is in May, I know he wants to take him off meds (slowly) I just wondered if this is normal? Our consultant is just a peadiatrician, though he said he has an interest in epilepsy.

My main concern is him having a full seizure once off meds, or the meds not working second time round. Any advice greatly appreciated. Thanks for reading.


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  • Posted

    I am Margarets Husband. I cannot rearly give you any advice. My Wife is now 80 years old and as now been suffering from Alzhiemers for 5 years. she still takes 100mg of Phenytoin twice daily for Epilepsy and has done since she was 18 years old.

    I can tell you my daughter-in law took Epilepsy tablets for 2 years, and was eventualy weened of the drugs with good results.

    every one is dfiferent only you can make the right desision

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  • Posted

    Hello, thanks for reply. That is interesting to know.
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  • Posted

    HI there

    Just for curiosity, and forgive me if you already know this, but carbemazepine, and several of the other epilepsy drugs work miraculous cures for people with bipolar affective disorder.  I was once on carbemazepine for this and then switched to sodium valproate (Epillim), they both worked well and made a big difference to my life for the better.  Eventually I came off the sodium valpraote and just stayed on anti-deps and anti-psychotics and am now quite well.  I thought you might be interested in this as the carbemazepine has terrific mood stabilising effects and may be helping with your son's hyperactivity and aggresion.  I'm always cautious when dr.s try to take me off things but as another contributor said, everyone is different.

    I hope it all works out for your family



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  • Posted

    Hello, he was fine, a quiet child, no aggression or anything until he had the first seizure. So the epilepsy started it all (apparently it was effecting the front of his brain which is personality) Since being on medicine the seizures stopped, but he hyperactivity stopped straight away, but he can be aggressive. I have read that that medicine can make them aggressive, so interesting what you say. Thanks for reply.
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