Hello – this is the story of Nat’s journey with Epilepsy and the Ketogenic Diet. Nat was born healthy, and was on pace or ahead of the mark developmentally when he had his first seizure in April of 2007 at 2 years and 7 months old. His second seizure came less than 48 hours later, and by the time we were released from the hospital 10 days later, Nat was having multiple seizures per day. Ten days in, Nat was having tonic-clonic, absence, myoclonic, and atonic seizures, and was already on his third anti-seizure medication combination. The bloodwork, MRI’s and lumbar punctures had revealed nothing, the EEG confirmed generalized epilepsy.
Home from the hospital, the severity, duration, and frequency of seizures increased, a suspected adverse reaction to one of the anti-seizure meds. In less than 20 days, we were back in the hospital for another EEG as Nat’s drop seizures had increased to 70+ per day (actually, we just stopped counting at 70). Nothing new was revealed from the EEG, and by now we had been doing research like crazy and had read about the Ketogenic Diet. We were told that it was a last resort effort as it was very hard to administer. New medications were prescribed. In addition, it was discovered that Nat had cataracts in both eyes, requiring lens implants. (To date, no connection between the seizures and cataracts has been found).
By October we were on our 9th medication, and we had achieved nothing except to turn our bright, energetic, ever-smiling little boy into a lethargic, listless, over-medicated little guy who had to be coaxed into smiling, assisted in walking, and encouraged to play. We made the decision to go to Mayo Clinic for a second opinion. After reviewing Nat’s history, and an overnight EEG, we were immediately told that Nat was a very good candidate for the Ketogenic Diet – we did not need to be sold on the idea.
Nat started on the diet in late November, and after a few initial stumbling blocks getting his medications regulated, we had our first 17 days without seizures in over 9 months! Nat is still on the diet, and although we are not seizure free, the diet has been the best thing we have done for Nat! His seizure activity is 90% reduced. The drop seizures are gone, and most of his seizure activity now is in the form of grand mal seizures, lasting less than a minute, and most often in the early morning hours in his sleep.
Is the diet easy? No, it takes time and dedication for sure, however, I would absolutely recommend giving it a chance. Nat’s life is so much better because of it. He is still on anti-seizure meds, but in doses that aren’t numbing to him, and he is again smiling!