Weaning off epilepsy Medication/ Growing out of epilepsy

[crazymum53]

dd is 12 and has been on carbamazepine since she was 3 years old. She has now been seizure free for 2 years and the docs want to have another go at weaning her off medication as she may have "outgrown" her epilepsy.
She has had tonic-clonic seizures that occur during the night / early morning.
Have tried this before and it hasn't worked so am worried about trying again. So would like to hear whether this has worked for anyone.

We weaned our DD off Epilim aged 4.5 after she was seizure free for a year. The doctor thought she might have outgrown her nighttime seizures and fingers crossed it worked - she is now 7.5 and still seizure free. It was a very worrying time though and I don't think I'll ever fully relax about it. The doctors warned us if it didn't work first time they would recommend us trying again later because of the long term effects of her medication.

I cant offer any help as we are a long way from your position but just wanted to say Good luck crazymum, dd2 is on carbamazepine after a switch from epilim and the thought of weaning her terrifies me as much as I hope we can do it one day. I really hope it works for your dd

Just come from Paediatric appt where we had this discussion re DD and weaning her off Phenytoin (she is on 2 other anti convulsants as well). We have tried before and failed as something else has always been thrown into the mix eg chest infection & antibiotics making her poorly. We have weaned her off other drugs before and the reduction of the dose has often triggered small seizures but those have settled down by themselves.
My best advice is to do it when the time is right for your family (not that there is ever a good time) eg DD is otherwise well, no holidays or important events coming up etc then at least if it all goes pear shaped it causes the minimum stress/inconvenience to you all.

Good luck

I'm with deafworm on the thought of weaning off being terrifying. DS is 13 and on a very small dose of epilim - he's probably "outgrown" the dose anyway and he has been seizure free for over two years ......
When his paed first mentioned it we said weren't ready and he has never asked since! In the summer we made a sort of progress in that we decided that if the paed suggested weaning him off it we would say yes, but we wouldn't broach the subject.

Guessing we will make the move soon though; ds doesn't appear to have any side effects but of course stuff could be going on that has yet to come to light.

I haven't decided yet - have told doctor I need more time to think about it and would want to take things very slowly. Trouble was the last hospital appointment was not with usual consultant but with a registrar that I hadn't met before so am not sure whether they are right / have they read all dds notes? Last time it was suggested I said Yes straight away, but within a week of lower dose had an emergency admission to hospital with a major seizure so medication was increased again.

We have just started to wean DS off Epilim. He is on a high dose as well as having another AED. He has been seizure free for a year. I agree it's very scary but there is also the exciting prospect that he may be more alert, aware and learn better. We are doing it very slowly over several months with EEGs to monitor how things are going. We are also making sure everyone is aware of seizure protocols, etc... When we discussed drugs in the past we always discussed switching drugs as opposed to weaning him off one completely so I totally get how scary it is. He has lots of brain tumors so will always have epilepsy of some form or another and the concept of him being on just one drug would be amazing. I do think you are right though to want to talk to your paed before going ahead. The registrar might be right but may not have enough knowledge about your DD to make the right call. hope it works out

Hi crazy, yes we weaned dd1 off her epilepsy med after 2 years seizure-free, but our experience may be different in that from the start we were told her epilepsy was an "out-growable" type (rolandic). Agree with bigbluebus to start weaning off when there are no major stresses (ie tiredness or other triggers) about to happen - we were given a schedule to follow in Aug 2010, but did not start it until Jan 2011, as dd was moving from middle to high school, then Christmas etc. It has worked out fine.

Hello wentshopping am very interested in reading your post as there do seem to be similarities. My dd is Y7 and has just started secondary school in September so this is another factor to consider. Am wondering also if physical maturity is a factor - previous growth spurts have resulted in her medication being increased and she hasn't really had a pre-teenage growth spurt yet. Am also wondering about the onset of puberty and how this may affect her condition.
I have not been given a definite name for her epilepsy type but apparently there is a high chance that she may grow out of it sometime so it will be worth giving it a go in future.

How did you get on? We weaned our dd off Epilim when she was 6 after she'd been on it for about 2 years. I was terrified. She was on a high dose, but had stopped having seizures. I waited for quite a few extra months before starting weaning, but it was fine. She's now 12 and never had a seizure since going off the Epilim. I'm still hyper-vigilant for any sign it's returning, but so far so good.