M.G.
First and foremost, I am so sorry for your pain and frustration! You have already been through a lot! There is nothing worse than knowing something is wrong, but not knowing what it is...or why, and even worse...not being able to do anything to help the situation! My mother could probably relate more to you in this case than I, as I was the child with this condition. Although they've done the tests that they have, it may not have shown up due to his age?! He may have a type of epilepsy that causes petite mal seizures!? That is what I have/had. It happened much more often when I was a child then it does now, and I took medication for it when I was a child that seemed to cause it's own set of problems. I don't reccomend any of the meds they use to treat it!
From the childs perspective...they don't shake all over like you would think of when you think of seizure...they just sort of go blank for a minute and then they're back, and really tired. I remember my family calling my name to me...and then all of a sudden I'd snap out of it and be tired afterwards!
To be honest, I never even really knew what I had until I was 20 years old and in college...I had been taping a lecture, and while I was replaying it I noticed there was a whole minute of the lecture I don't remember hearing at all, and I was paying attention! Then it was again and again! When I brought it up to my mom she said that I was probably having a petite mal durring those times and then asked me if there were florescent lights in the class room, to which I replied yes...she said for everyone, the triggers are different...my triggers are florescent lights, strobe lights, and certain smells....they make me seizure, grow very tired and sometimes actually vomit! The key is to identify and avoid those triggers, he should have the episodes less as he matures into an adult!
It's hard to say what causes them, in my case I have family history with my Dad and Grandma...but if you notice it more after vaccines are administered...there may be a trigger in the vaccine, or it is possible the vaccine may be the cause!? More research would need to be done! Always take down the manufacturer information, exp. date and lot number for every vaccine you ever administer to your child, and when. That way if you wish to file a complaint, you have the proper information to do so. Your doctor should have the information you need, but don't rely on them to file the complaint, you will probably need to do that yourself!
Here is a website you can do that through, with more information you might find interesting regarding vaccines!
http://www.909shot.com
If it's any consolation, I have lived a very long, happy and successful life, not even knowing I had this problem...chances are your son will too! It's always harder on the parents than the child....the child doesn't know anything is different...so I wouldn't treat them as if they are, if it were me. When he gets a little older, like 4 or 5 I would have him re-evaluated by a child neurologist, if you wish to have a diagnosis...but I would definitly do my research before administering meds!! Esspecially Dilantin! That stuff is worse than the illness itself!
Feel free to email me if I can ever assist you in any way!
My situation may or may not apply to yours but it's all I know, I hope it has helped. My prayers and thoughts are with you and your family in your search for answers! Take care! ~M.
