advice

Hi there and Welcome to HealingWell!

I am really sorry to hear about your son. It cant be easy when he has seziures and the fact that he has 20+ per day must be even worse. My immediate thought on what to do is to change his meds. If he is having 20+ seizures per day, then the meds probably are not covering him very well. I take Carbamazepine (Tegretol) which I think works wonderfully. Other people on here take Lamotrigine (Lamictal), Epilim, Phenobarbital and Keppra to name a few. Has your son tried any of these? If you find that one med is not enough, you can bolt 2 (or sometimes 3) together so that you get a combined effect.

My other thought turns to the neurologist... Have you tried telling him your concerns over his lack of communication? If he really is not very good at communicating, then perhaps changing the neurologist is something to consider. Changing to someone who is going to listen and talk is just as important as getting the megs right (In my opinion). If you are in the US, you can be referred to see an epileptologist rather than a neurologist. (Im guessing he needs to see a neurologist anyway though?) However epileptologists do not exist here in the UK (and I believe the same is true for mainland Europe).

I hope I have been of some help to you. Please keep talking to us.

Darren

I'm in Ontario Canada and we're seen at the best teaching hospital we have in Canada - Sick Kids.
It's so frustrating cause I feel they're not doing much but maybe I need to be more patient.
He is having all kinds of seizures - tonic clonic, myoclonic, and I think noe grand mals.
He has been on Valproic acid, keppra, and now is on clobazam and dilantin.

Has anyone tried acupuncture before?
I'm looking for any kind of alternatives since the meds aren't working.

I am responding to the women whose child has seizures 20 times a day.I don't know who your sons neurologist is but it sounds like you need another one. You should, if you already haven't, talk to John Hopkins Hospital in Baltimore.
They will help you find someone. John Hopkins is very progressive and one of the leaders in research for both Alzheimer's and Epilepsy.
I found a doctor in Los Angeles, which is where I live, that is really perfect for me but there are many out there who work specifically with children. The first step is research the doctors and find someone who is interested in figuring out what is happening with your son.
I wish you the best, I imagine its very scary but please keep us posted.
Best