Epileptologist

[RR25]

Has anyone had an app with an Epileptologist? If so....what should I expect at my appointment.

Thanks RR25

[jules1973]

I am under an epileptologist the now and he is an amazing man expect lots of tests and appointments i only had this as i was going through epilepsy that was drug ressisant in the end i had brain surgery that was 2 yrs ago next month and have been seizure free since

[zippytiptoes in reply to jules1973]

How do you get to see an epileptologist? Where is yours based?Our daughter has drug resistant epilepsy and we are now at a dead end having repeated the same cycle of on meds/off meds over the last four years. On meds she is very aggressive and they don't stop the seizures. Off meds she is much calmer but has many seizures in a day. We are at the end of our tether. Any suggestions would've gratefully received

[jules1973 in reply to zippytiptoes]

I am under a neurologist and an epileptologist i am in scotland the neurologist was at a loss and could do no more so he referred me to a dr derry at the western general hospital in edinburgh he is amazing along with the neurosurgeon i no longer have seizures 2yrs now you are entitled to ask for a second opinion and ask to see one you are perfectly within your rights to do so x

[RR25]

My neuro is going to refer me as Ive been on 2 meds together now for a number of years and on the maximum dose. Although Im not totally seizure free with them, the number i do have has reduced significantly. He does not want to add a third med as he doesnt know which med would be best suited to the other 2 and because Im young and keen for a family in the future...the other meds available have risks during pregnancy and to unborn babies so he feels a referral to an Epileptologist is the next best thing to do for him/her to review my case. He said there is still a possibility to become seizure free and hasn't classed my case as drug resistant at present which was good to hear.

@Ziippytiptoes....you could ask your childs neuro to refer you to one considering there is no major change.