Wednesday, September 10, 2008

you think you've got problems....

Yikes.
In my search to find someone dealing with the similar issues as me, I joined an "ecommunity" for people dealing with seizures and epilepsy.
I posted my question about one seizure, abnormal eeg etc, why medication? .....

Some of the responses go something like this....
"Wow! I could have written this myself. I know exactly what you mean...."
Oh wow, I think someone with a similar experience.
And then ominous musics inserted here...

" when I got the EEG report, which states ... "As the day progressed the background became more symmentrical and less of the epileptiform discharges were identified", and the day after the seizure on 7/3 "This slowing may well be seen as a post-ictal finding and has improved from the beginning of the recording."

I know; I can see your eyes crossing from here.

This was written by a mom who's profile reads like this....
Single Mom to L... complex partial with secondary generalization to tonic clonic activity. Stopped Keppra (imagine a 6 year with PMS), failed Trileptal (rash), stopped Depakote (extreme intestinal issues), and back on Clorazepate (Tranxene). Stalling on starting Topomax, since there has been no seizure activity since the first one (knock on wood)

Yikes. She is a lighter version of what people struggle with. Some people cry out on the boards as they take their children in for brain surgery. Kids having big seizures everyday despite numerous medications and/or surgery.

I have just hit a little rough spot in trying to figure out what to do with my kids and our life. Between KC's developmental issues and now K's seizure, it is all I can do to keep us all alive. I've found myself angrier than normal, and I take it out on the four guys I love most in the world.


1 comment:

LeRoyFam said...

Thanks for the encouragement! Good to hear that I'm not alone in my quest for feeding my kids healthier...I can't help but wonder what other issues could/would manifest if I was feeding all my kids a "typical" american diet. We've always been pretty healthy, but this has definitely taken it to a new level and I really like it. I feel a lot better about what I'm putting into their little bodies. I hope you find answers for your kids.

What is a delayed food allergy test? I asked for food allergy testing and our pediatrician refused saying he didn't have any signs...I think they're more "intolerances" than they are allergies...I would be curious to know more of what you're talking about? I think if I pushed it she would listen to me, but I need more info. :-)