Noah had his first seizure ever, a grand mal, in May 2009, just 2 weeks after his 4th birthday. Prior to this, his development had been completely normal. He went on to have 3 more seizures in the next 3 days, with normal results on LP, CT, MRI and EEG. He was put on Trileptal and sent home, seizure-free. Two weeks later, we noticed that he would have periods of “space outs”, occurring maybe one or two times a day. At our followup neurology appointment, he “spaced out” right in front of the neurologist, confirming what we all thought -- these “space outs” were absence seizures and we were dealing with a more complex seizure disorder than we originally thought. We changed medicines, increased dosages, and 3 weeks later he was in Non-convulsive status epileticus (NCSE), seizing 100s of times a day, spending an average of 6 minutes out of every 15 in seizure activity. We temporarily broke it with high dose valium, but two days later he was back in NCSE. We tried the seizure medications Keppra, Zonegran, Zarontin, Banzel and Depakote, to none avail. Noah was slipping before our eyes – not interested in playing with his precious legos, back in pull-ups, barely speaking, barely moving, and had gone from a solid 41 pounds to a scrawny 34 pounds in less than a month. Our doctor recommended either Felbamate, if we wanted to try one more drug, or the ketogenic diet. Even though I was fearful of the work involved with the diet, I was more fearful of the release form for the Felbamate, so we decided to try the diet, since we were already in the hospital. My husband had already read Dr. Freeman’s book and was sold. With Noah in such a compromised position, we also made the incredibly difficult decision to feed him via an naso-gastric feeding tube. Remarkably, on day 4 of the ng tube keto feed, he became seizure free. He slowly regained his alertness and his EEG improved remarkably. We went home in August and slowly began transitioning to an oral diet. When we started the diet, Noah was on a total of 5 AEDs. He is now down to 2 and has been seizure free for 5 ½ months, except for a breakthrough tonic clonic seizure 4 months ago when weaning one of his meds. He will be going for an EEG this month, and depending on the results, we will begin again to wean one of his meds. The most remarkable thing is that the diet has given us our son back – he is thriving, alert, playing again with his siblings, and even trying to learn how to read!! The diet is definitely a lot of work, but nothing was harder than watching our son fade before us. I try to keep that in perspective each day as I prepare his meals – where would he be if he wasn’t on the diet? A scary thought for sure.
Thanks for listening and for encouraging families like ours!!