Referral to epilepsy team

[Bootrip2]

DD today was referred to epilepsy team, she is already on Tegretol, has had two fits, some time ago, and was put on this after second fit, three years ago. Having her dose halved appears to be giving her slight symptoms, so doing a referral. I was wondering what is likely to happen at consultation? She is 8, so will be paediatric clinic.

[Buggles94]

Hi there sorry to hear the reduction has given symptoms.. hopefully they will find a dosage that works for your daughter again. My son was diagnosed with epilepsy at 8. His is complex and he is under GOSH... Please feel free to PM me if you need to chat through anything before or after appointment...
take care - thinking of you x

[Bootrip2]

Thanks, now not
Referring as we are just reverting to
You previous dose of tegretol.

[Buggles94]

Really hope that gives you stability again soon... It's a scary illness but thankfully can be managed in many cases... Take care

[Bootrip2]

Yes, very scary unpredictable condition. Although i would prefer for her not to have meds, I was always a bit wary of coming off them. Hopefully she will settle back down. I think we already have too many professionals involved in her care!

[sophie1405]

I'm on tegretol 600mg twice a day! it gives me awful side effects such as double vision light headless, unable to function on certain days,vomitting. we are waiting to move it back to a steady dose however been on this dose now for 4 years! x

[Bootrip2]

Luckily DD is on no where near that dose! It does worry me about side effects as she cannot always explain to me what is going on. Hopefully dose will stabilise her, but it really is trial and error! I hope you get sorted soon. Its one of those drugs you are scared to change when you know what dose works for you. X

[sophie1405]

Originally Posted by Bootrip2

Luckily DD is on no where near that dose! It does worry me about side effects as she cannot always explain to me what is going on. Hopefully dose will stabilise her, but it really is trial and error! I hope you get sorted soon. Its one of those drugs you are scared to change when you know what dose works for you. X

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im hopefully gonna change them in september when i get back from my florida trip. I've been on lamotrogine since i started seizures 12 years ago and i am scared for the doctor to say no your not having this anymore as this is my comfort blanket and i feel confident with this drug xx

[Blue21]

Hi sopie1405 my step son was diagnosed with epilepsy 12 months ago when he was 27. He attends Walton Neuro and is on Lamtrogine and Cepra and although the seizures have eased they have not stopped, he is really worried about the plane journey but we are trying to convince him it will be ok. I have tried to PM you but I can't. Would you possibly PM me I would really like to talk to someone has experience of epilepsy and travel to Florida. Cheers

[sophie1405]

Originally Posted by Blue21

Hi sopie1405 my step son was diagnosed with epilepsy 12 months ago when he was 27. He attends Walton Neuro and is on Lamtrogine and Cepra and although the seizures have eased they have not stopped, he is really worried about the plane journey but we are trying to convince him it will be ok. I have tried to PM you but I can't. Would you possibly PM me I would really like to talk to someone has experience of epilepsy and travel to Florida. Cheers

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sorry i never checked it i will pM you now :-) i attend walton neuro too :-)