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Posted by Johnna on September 20, 2000 at 21:40:55:

In Reply to: Re: 2 yearold having siezures for no reason posted by Julie on September 19, 2000 at 01:35:58:

: : My 2 year old son started having siezures when he was three days old.He had a blood sugar level of 14 and had physical siezures as well as brain siezures.They got them under controll and a week later he got to come home. For 10 months he went siezure free and had a cluster of 9 in 24 hours so he got an eeg done and it was normal. 10 months later it started all over again and another normal eeg. then 5 months later it happened again and yet another normal eeg.He has had three more diffrent clusters of siezures and still normal eegs. Finally we got an MRI and that too is normal. My questions are what do we do next to find out what is causing these siezures, is there any thing special that we should be asking our DR. to do( Like certin tests for a diffrent problem other than just epilepsy) We are so baffeled as to what could be causing this problem that we will try(do) any thing to just make them stop or just find out why.He is on Tegretol and was on Phenobarb.Any response would be greatly appreciated!!! Thanks Rashall

: I am so sorry to read about what you are going through with your son.
: Has he had any heart testing to see if maybe it could heart related at all.
: There are many heart disorders that can have these types of symptoms, but one that I know of because its in my family is called the LONG QT Syndrome, we found out after three years of doctors not knowing what was going on with my kds after having many unconsciouse episodes between them, my daughter was tested for epilepsy because they had no idea why this was going on , her eegs were all normal and clear, they did them twice over a few months,they began treatment of tegretol, until in the end we asked them if it was possible to be heart related, they thought not because of her being otherwise so healthy looking but we had her ECG tested and it turned out to be her heart causing it.
: I am not saying it it will be the same with your son, but I think you should have his heart tested to be sure.
: Best wishes.

I am also sorry to hear about your son, from experience. I was an adult when my seizures
started. Reason? EEGs, Cat scans, MRIs all normal. Has your son had a seizure while
having an EEG? If not they often come out normal. Also if not I'm surprised they haven't
suggested an intensive EEG monitoring. Which consists of a several day stay in the hospital
hooked up to an EEG. Monitored by camera. Often taken off medication to induce seizures.
This is how they detected mine. Are they Tonic Clonic seizures or partial seizures? I also
take Tegretol. That alone does not work for me. I now take it in combination with Lamictal.
I have been seizure free for almost 9 months. That is a first for me. When I have had them
they sometimes come in clusters. Check into this if you think it will be apropriate to ask.
It couldn't hurt. Good luck and GOD bless.
Johnna

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