John’s arrival was the happy culmination a challenging pregnancy, labor, and delivery. On his second day of life, I asked the pediatrician about some strange jerking I had seen him make with his right arm. He assured me it was nothing. However, after we took John home, he continued to have episodes, about 30 seconds long, where his eyes would deviate to the right and the right side of his body would jerk. When he was eight days old, we took him to the emergency room, where he was admitted to the NICU for the following two weeks. There our suspicions were confirmed: he was having seizures.
I don’t like to remember the period of our lives that followed. It was very, very dark. I felt like I was being kicked in the stomach all day and night, every day.
In the first four months of John’s life, he tried six medications, and they all failed to control his seizures. Meanwhile, his seizures became more severe, generalizing into tonic-clonics. They were mercifully short (under 60 seconds), but very frequent (10-20 a day). At four months old, he also experienced near total developmental regression, losing the ability to roll over and, most painfully, losing his cheerful personality. For several months, he would rarely make eye contact, smile, or show interest in anything.
In February, we started the ketogenic diet. It took two and a half months for us to work through the many issues that arose with the diet: extreme difficulty achieving good ketones, fluctuating Phenobarbital levels, newly discovered food allergies, and a keto team that was ready to give up. But we worked through each issue, and with the help of Dr. Kossoff and Beth Zupec-Kania, found a new dietitian who helped us put our son on a form of keto called an MCT Oil Diet.
I can tell you the exact hour when the ketogenic diet started to work, two and a half months after we started. John was sitting next to me in his carseat. I noticed that he was moving his arms and legs more like a normal child. When I put my hand out to him, he actually reached out to grab it. I could see a light in his eyes and his old familiar, smiling, laughing, interactive personality was back. Over the next two days, he started to play with toys for the first time, lost his head lag, and sat up on his own briefly. Within 48 hours, the Ketostix showed that he was finally making large ketones.
The ketogenic diet gave us our baby back. It was extremely challenging and had some unpleasant side effects, including that John stopped eating completely and had to have a feeding tube placed. But for many months, the diet gave us a happy, interactive, developing baby instead of a zombie.
The diet never completely controlled John’s seizures, but by the time he was a year old, the team at the Cleveland Clinic identified the cause of his seizures: cortical dysplasia in his left parietal lobe. He had resective surgery on November 1, 2010, at the Cleveland Clinic and has not had a seizure since.