who was I kidding :-(

[loflo]

So after DS was diagnosed with epilepsy in May I thought things were just starting to get back to normal. He has reacted well with his meds (on 8ml tegretol twice daily)and was settling back well into school (we are in Scotland so been back a few weeks).

But over the last few days the weirdly behaving/not listening/hyper boy is back. All the calmness seems to have gone again and this is what happended just before he became really ill last time and started have seizures every half hour.

Just so . And next week we have a meeting with the local NHS trust re our formal complaint and all the fight I had in me has just got up and gone........

I hope your appointment goes well.

Could you get in touch with his consultant and have his meds looked at. They may need adjusted if he is starting behaviour that leads to a fit.

Sorry, I've no experience with epilepsy so can't offer an more advice, but didn't want to read and not post.

my son has epilepsy and tegretol may not be the best medication for your son, it can make them hyper active or hyper sleepy, my son was the sleeping zombie for years on this, he changed to lamotrigine and has been a different awake, interactive child, its worth doing a bit of research on the drugs and speaking to your gp/paediatrician/neurologist, there are SOOOO many different drugs available that you may have to do some tweaking for a while until you find the right one. good luck and hope it all goes ok for you

Aw thanks 5inthebed and lainey. DS also has a sore throat and I wondered if maybe that means his tegretol is not so effective? Our epilepsy nurse is on holiday and DS's neurologist is off sick so taking him to the GP later today to see if we can deal with the throat which might help the tegretol work more effectively iyswim.

We are due to see the neurologist later this month (if he is back to work) so will ask about lamotrigine.

lamotrigine suits me too, whereas the previous epilepsy meds I had made me gain weight, feel constantly slightly naseous, and made my hair fall out.... but it really seems as though different drugs suit different people and sometimes you just have to suck them and see. Unfortunately as well one person's needs can change - if your son is still growing and/or hormones changing, that can throw thing off as well (or being pregnant, though clearly you don't have to worry about that!)

good luck