On Thanksgiving Day 2003, Noah was 2 1/2 years old and had a grand-mal seizure right in front of me in our basement. I thought he was electrocuted, but there were no outlets nearby. Soon we'd find out that it was a seizure. He slept on me afterward, in my arms in the ambulance. And finally woke up some time later at the hospital.
We were told it was probably an isolated incident, his tests and scans all came back normal. Many children have a seizure at some time or another, it probably wouldn't happen again.
Well, it did. He had one about a week or so later and we again rushed by ambulance to the hospital. This time his tests were not normal. He was put on medication (Topamax) and we were assigned a neurologist. Things become a blur when I think about this time because all of a sudden he went from 1 seizure a week to about two hundred or more a day. All sorts of seizures from staring spells to drop attacks to grand mals, any kind and every kind.
He had to wear a helmet at all times, he lost his speech, and soon his ability to walk and do many activities. It was like we were watching him waste away right before our very eyes.
Our pediatrician and neurologist at the time didn't know what was going on and (from what it looked like to us) they showed no sign of trying to find out what was wrong with him. Their only plan was to try more meds. And that only made Noah worse.
We went out on our own and miraculously got a last-minute appointment with a pediatric epileptologist at Children's Memorial of Chicago's Epilepsy Center. She immediately was able to diagnose Noah (finally) (and when I say immediately, it was like 10 minutes). He was diagnosed with Myoclonic-Astatic Epilepsy, also known as Doose Syndrome.
We were offered a couple options- try another medication or try the Ketogenic Diet. We'd heard of the diet- we had previously asked our original doctors about it and they said "nobody does that anymore. It's too hard. It doesn't work."
But they couldn't even diagnose Noah.
We fired those doctors.
This (wonderful, amazing, answer to prayer) doctor at Children's had experience in this condition and knew first-hand that the Ketogenic Diet had a nice success rate with Doose kids. We were on board. We did start a new drug (Keppra) with minimal side effects, and chiropractic treatments with moderate success in the meantime until we could start the diet.
Noah started the diet a few weeks later in March 2004 (initiated at Children's Memorial. I stayed with him the entire time.) By the 4th day of the diet, he was seizure-free and we were sent home.
He came off Keppra within a couple months and continued on the diet for 8 months seizure-free, and in October 2004 he had a grand mal seizure that we believe was from an ear infection. He never had another seizure. As of this writing, it's now been 5 1/2 years. :)
Noah was on the Keto Diet for 2 1/2 years and weaned from it completely in the fall of 2006. He's remained Diet-free, Med-free, and Seizure-free all that time. It's pretty awesome.
I wrote a bit about the diet in the past here. The Ketogenic Diet is in no way easy. Nope, not at all. But it is SO WORTH IT.