On April 9, 2011, our world changed forever. Our son Geoffrey was 16 months old. On the previous day, my mom had called me at school and said that Geoffrey had fallen and hit his head 2 different times and she didn’t know why. We thought maybe he just slipped…but he continued to fall mysteriously, and then as I watched him feed himself, I saw him drop his spoon as his hand went limp and his body fell forward. We took him to the. He had CT scans and EEGs, gets blood work done, and sat around forever wondering what could possibly be wrong with your perfect child. When we got the diagnosis, we were scared. You wonder why this is happening because your child doesn’t deserve it. My husband and I left the hospital with a bottle of Keppra, a lot of questions, and not a lot of answers. I read the pamphlet they gave us so many times, but it was worthless. Over the next few weeks, we tried several other medications, but Geoffrey still had seizures…up to 100 in a day, but 30-50 on average. We padded our floors and got him a helmet…but we knew there had to be something more.
We started researching the ketogenic diet and talked to our neurologist about it. We found out that we could start the diet over the summer, so we made the appointment. The last week of June 2011, we started the diet. I remember lying in bed the night before we were going to be admitted. I was reading “Keto Kid” and thinking about how hard the diet was going to be and I just cried my eyes out. My husband looked at me and said “if you’re so scared and worried about doing this diet, then why are we doing it?” But I knew in my heart that it was worth a shot. It was so emotionally draining watching him have seizures and I worried about the long term effects of the medications. If there was any chance that this diet could reduce his seizures, we wanted to try it.
The next four days were absolutely horrible. We were confined to a hospital room, but most of that time was restricted to the bed. Geoffrey didn’t want to drink the fluids so we had to hold him down and squirt them in his mouth with a syringe. He was so weak and fragile looking, but he wanted to be up running around. He was hooked up to an EEG for 2 days straight…and the most discouraging part was that he was still having seizures. We left the hospital with a cooler of keto meals, 15 recipes, and the hope that the diet would start to work.
That weekend Geoffrey was sick with a fever and we took him to urgent care. He was diagnosed with tonsillitis. The doctor made me feel like a horrible parent when he asked what was in Geoffrey’s bottle and I told him diet root beer and he reprimanded me. I had to explain the diet to him and insist that they give him the shot of Rocephin rather than the routine liquid antibiotics.
On the 4th of July, Geoffrey had his last seizure. It’s still hard for me to believe because that seems so long ago. The diet has been a miracle for us. We have been able to wean him off of Klonopin and we have begun to taper him off of depakote. I’m nervous and excited that he could be completely medication free by this time next year.
Sometimes I get emotional thinking about the diet. I feel like it has taken things away from Geoffrey…like decorating sugar cookies during the holidays, enjoying s’mores at a bonfire, or having a delicious pancake breakfast. But then I have to remind myself…it has given us so much more than it’s taken. And there are plenty of times that my husband and I are really tired at night and dread cooking the keto meals…but we do it for that blonde haired, blue eyed little boy who, like everyone else who has it, doesn’t deserve epilepsy.
Update (August 2012)
It seems like only yesterday that our son, Geoffrey, started on the Ketogenic Diet. The diet continues to be a blessing for us. Geoffrey has been on the diet for about 13 months now. Months into the diet, we thought that it was so easy. We often talked about why parents would say it was so difficult to maintain and how some would stop the diet because of it. Now that my son has been on the diet for over a year, we truly understand why parents say its difficult. Initially, my son would eat anything that we made him. After about 6 months, he started becoming picky. About 10 months into the diet, he started becoming more and more hungry and would ask for food more often. It’s frustrating to see your child fussing because he is hungry and We are unable to give him more food. The only meals that he will eat now are Keto pancakes, hotdog, bologna, Keto Pizza, and Keto Cheesecake bars. The preparation of the meals is tedious and requires patience but its completely worth it! Geoffrey is completely off of 2 of the 3 medications he was on (Klonipin and Topamax). He continues to take Depakote but we are hoping to start weaning him off that medication soon. We are so blessed by this diet. No words can describe what a miracle it truly is. My son is becoming more vocal (even though he still doesn’t really talk) and we contribute that to the diet and weaning off the medication. We look forward to the day when he is totally off the diet and the medications.