I remained a part of the group well after he was seizure-free, but after a while the emails weighed down my inbox (and to be truthful, my heart) and so I stopped participating regularly. Yesterday I clicked on over and wrote this message, words that I always longed to write. And for those not familiar with our story, it will be a real quick long-story-short version. (And I also include some personal facts about Noah that I haven't shared here before and so I will probably delete in a couple days.)
I am just checking in today, too, and oh how I miss this group. My Noah is 8 now, but when he was 2 yrs 9 months he had a tonic-clonic seizure- went to the ER, told it probably wouldn't happen again, it's normal, etc.
About a week later he began an odd behavior that looked like he was going to have another seizure. Here's where it all seemed to begin (and I know his story is in the files somewhere) and it gets kinda blurry, but we went on meds then and the hundreds of seizures a day started... we searched for answers, found this group, got a helmet, found a new doctor (Dr. Linda Laux at Children's Memorial Hospital Epilepsy Center in Chicago), and got on the ketogenic diet fairly quick. He was seizure-free by day 4 on the diet and had only one seizure since then (a t/c believed to be a fluke, possible ear infection)...
it's now been almost 5 years seizure-free? Could that be right? I used to count the hours, then the days. And now years have passed.
I want to give you all a hug and an extra breath of hope today. Our 1st doctor said Noah could end up in an institution. At this very moment he is outside playing basketball with the neighbor kids.
He is going into third grade right on time with the other kids, but did recently get an IEP at school and start special education classes for part of the day. It has so far showed very positive benefits.
I only dreamed of being on this side of things. I wish you here, too.
Much much love,
Mom to Noah, Carter, Gray, & Ivy
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