Stopping Epilepsy meds after 1 yr - worried?

[Threepeasmum]

My daughter (4.5 yrs) was diagnosed with focal seizures last September (eyes and head turn to right for 20-60 secs). She had several seizures at home, we took her to A&E and we were seen by the neurologists all in the same week. We went from shock and worry to having a dianosis within the space of a week. She was put on Carbamazapine 2 x 5mls a day and we have been on the same dose ever since.

Since last October she hasn't had any seizures or had her meds increased (and she has grown A LOT) so at her last check up they suggested stopping and we are just starting to withdraw the medication.

I am confused and concerned that we are rushing into it because she is starting school in 2 weeks time. I was led to believe that she was unlikely to grow out of them. Her MRI was normal but her EEG record was abnormal. It said 'persistent epileptiform abnormalities of spike and slow wave seen in the left fronto-central region...These fiding confirm the presence of an active left fronto-central epileptic focus.'

I suppose I was wondering whether anyone had any experience of these seizures and if medication was stopped, what happened, etc.

Also, does anyone understand the EEG report? (Had 6 week old ds2 whilst going through testing etc so not sure I absorded most of it and have had a shockingly emotionally busy yr).

Thanks in advance.

Do you know if they were 'simple partial' or 'complex partial' seizures?

It's tricky because people can have abnormal EEGs but not have seizures, and vice versa.

I think they are simple partial seizures. They are not followed by anything else when she has them. She also had language delay too but we have been having therapy for that. Her development hasn;t been affected.

presumably if she has another one while coming off, you can put her back on them? bit of a challenge coming when she's starting school; you would have to warn teachers etc what to watch for - but would be a shame for her to have to stay on the meds if in fact she doesn't need them any more (nobody seems to understand epilepsy fully.... and I don't have any of your excuses for not understanding EEG reports but really have no idea what they were on about with mine).

Good luck!

Good luck with your decision - I guess either way it's worth telling the teachers.

Hi threepeasmum - DS was diagnosed in May with frontal lobe complex partial seizures. He has been seizure free since starting Tegretol (brand name for Carbamazapine I think) after a massive dose of Phenytonin (sp?) when he was in hospital. He also had an abnormal eeg but a normal mri.

My understanding is that that we will be looking at two years on meds and that would be the earliest point that they woud look at slowing weaning off to see whether seizures still occur. It seems really quick to be looking at withdrawing but they maybe feel she is doing so well it is worth a try?

Ds's school have been really good (he has just started P2) - Epilepsy Scotland (where we are) produce a really good leaflet for teaching staff so might be worth seeing if you can get hold of something similar. Ds has an action plan so that if he has a seizure all staff know what needs to happen.

As for undertanding the eeg report not much help to you there but sure others will do a better job!

Good luck - let us know how DD gets on.

sorry rushing earlier but here is the link for Epilepsy Scotland resources - www.epilepsyscotland.org.uk/information_section/publications/leaflets.html

Thanks very much for the replies.

The brilliant doctor who dealt with us is on maternity leave and the next one has just retired so I am hoping to have another chat with the epilepsy nurse this week about whether it is the right time to wean her.

We still feel a bit in the dark even though we have been doing this for just under a year. The medication worked so well from the get go and it has all been as if it hasn't happenend, that I know I am probably panicking. But yes if she doesn't need the meds then it would be good to do it.

I was so worried and frightened not having had any previous experience of epilepsy that I hate the thought of seeing her upset again after having the seizures. So far so good though.

Thanks for the link loflo. Will pass onto school.