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Carbamazepime for epilepsy, please can anyone advise/give experiences with this

(6 Posts)
used2bthin Wed 21-Sep-11 21:41:56

After ringing to say could we think about medicating DD and it is our decision, the neurology registrar called back today to check if I had decided yet. I said that I still feel unprepared for this decision as didn't know enough about it and asked them what the neurologist feels. He said he thinks medication is apprpriate now that dds seizures appear to be more frequent.

I really want to contact epilepsy action for a chat about this as I feel unsure due to all the side effects, esp as dd has a lot of speech and language and development to catch up on and I understand that the drugs could make her sleepy and interfere with this. Also she is steroid dependant and is at risk of becoming very ill indeed if she has sickness etc from them initially which seems to be fairly common.

otoh if they feel its safer to do this then she needs to go on it. Or maybe they have to say that is what they think to cover themselves? Any advice appreciated, I will try and ring epilepsy action tomorrow but it is hard as I will be at work then at a hospital appointment with

used2bthin Wed 21-Sep-11 21:42:37

That should read with dd and thier helpline shuts four ish.

used2bthin Wed 21-Sep-11 22:09:06

bump-also if any adults have been on it did it make you feel awful? I can't bear the thought of more discomfort for her, she has a hard enough time as it is.

trace2 Thu 22-Sep-11 11:48:48

hi or over dd 4 is on this as been now for over 9 months i was so scared but its not made her tired at all tbh still dont sleep it worked great but she still as her dos i call them but its took the edge of them, we find when shes tired and as a cold so on still as them no whater what but we seeing nuero on friday so will let you what happens

used2bthin Thu 22-Sep-11 19:30:38

Thanks trace2 have just seen you posted on my other one too, thanks, had two as usually just post in SN section but realised there may be more people to see this one.

DD only has them when tired or unwell tbh without medication, am tempted to at least wait till half term as I feel its hard on her if she does feel out of sorts to start with when she is just three weeks into term of starting school.

Thats so reassuring that your dd has hasd no issues with the side effects, hope the neurologist has some answers about it still happening for you. Are they big ones? My dd has fairly short and subtle ish ones I think they are called focal.

trace2 Thu 22-Sep-11 19:57:45

dd as short and pronged ones but he gave her the meds for the drop attacks she as where these have mostly stopped. good luck with what ever you decide.

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