epilepsy troubles!

[cordysmum]

Hi

Our DD is now on 4 AED's twice daily but is having vacants every day ( not too worried) but she has never had any seizure control for over 2 1/2 years.

Is anyone else in similar positon?

Yes our son has has daily seizures for 8 years! Some of the 11 meds we have trialled ha e made him worse. Two have helped over that time but only as monotherapy. We also have a vagal nerve sti ulator and have had success with dietary treatment under gosh. Which neurologist are you under? 4 drugs is a lot... Hard to unpick which is benefitting and which is exacerbating. Do you have a particular form of epilepsy ? Good luck x

Hi Cordysmum. I would have thought that if you still didn't have seizure control, then your neuro would be looking at perhaps changing your meds or at least the dose. Might be worth an appointment/phone call?

Ketomummy - we've got a keto DS too Been miraculous for DS as like you, most meds, especially high doses, made it worse. Do you go on Matthews Friends?

Ketomummy - I remember now, I think you came on and recommended Matthews Friends!!

DD's neuro is in Southampton - Dr Whitney and she seems to think that our DD's epilepsy is very refractory and therefore recommending vitamin B shots if drugs still not controlling.

Weare back in hospital today for another EEG and consult with her normal consultant.Just getting a bit annoyed at moment as we keep moaning about drugs and it seems this falls on deaf ears.

What is matthews friends?