I thank everyone for the great advise. I am currently waiting to see if my insurance will pay for the visit to the Cleveland Clinic for a second opinion. I have a tentative appointment 4/5. So far, he hasn't had a bad seizure since 4/29th. The myclonic (sudden jerks) he hasn't had for 2 days. I am trying to gather as much information as I can prior to a trip to the Clinic. I appreciate all of your wisdom.
Linda
Thank you Jan. My sister found both of those links for me too, and they're great! lindacef - how is your son doing?
The link I previously gave is now just archives, worth looking at though. It is now on a new server and so here is the new link:
http://brain.hastypastry.net/forums/forumdisplay.php?f=133
for-science,
Are you aware that deja-vu can be a seizure? It is a partial (simple partial) seizure and I think if you take it further it is comes under psychic seizure. Myoclonic jerks (non seiz) are often seen in people with E.
Unfortunately I am not on my comp. or I could give you some good links. I can give you one, I have put it on this board before. You can get many links from the site I am posting:
http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Epilepsy&number=33&DaysPrune=1000&LastLogin=
Unclear, this could be a good resource for you,too. The people there are very nice and so helpful! It's a good support forum.
As far as meds effect on your son, maybe they just have to titrate him slower than most. That is how it was with me (but I am on Trileptal for Complex Partials). It was up and down, two steps fwd then one back. It took months (poss. over a year, but all the while getting a measure of control) to work up to the dose that controlled my seizures and it is still a low dose.
Good luck
In children it has been well documented (many studies done at the Cleveland Clinic) that occasionally what appears to be a generalized discharge could be due to a focal problem and hence really focal epilepsy. Generalized epilepsy means that the epileptic discharge is all over the brain simultaneously. In focal epilepsy it starts in one place, and then can spread. The reason to try and investigate this, is that epilepsy surgery (the removal of brain tissue) can only be done in focal epilepsy. I would strongly encourage you to seek a second opinion with one of our pediatric epileptologist. This is the type of question we answer often. Good luck.
My 13 year old son has myoclonic nonepileptic jerks. For a science project he is trying to establish a realtionship between those jerks and deja vu. On days when he has several jerks, he also has frequent episodes of deja vu. Did your son ever experience deja vu? Does he now that the seizures are more controlled? I hope you find some help for your son! If your son would be interesed in communicating with mine he can do so at ***@**** Thank you!