Michael was born on his due date, July 4, 1986. Almost immediately he began having seizures due to a grade 3 intraventricular hemorrhage (stroke), which also led to hydrocephalus (water on the brain). His seizures were controlled the first year of life with phenobarbital. The next two years were seizure-free with no treatment. Days before his third birthday, he went into status epilepticus.
It was at this point that we started the dizzying three-year cycle of medication, dosage changes, weekly blood tests, CTs, MRIs, doctor appointments, specialists, etc. By the time he was six, he had daily signs of being over-medicated (eyes would cross, abnormal gait, clumsiness, word-finding aphasia) and still having monthly seizures.
We were fortunate enough to be referred by our local pediatric neurologist to Johns Hopkins in Baltimore for evaluation to see if Michael would be a candidate for brain surgery, to remove the part of the brain that was seizing. The doctors there put him on 24/7 EEG monitoring while weaning all of his medications over a four-day period. During that time, Michael blossomed, becoming brighter, talking better, stronger physically. We were told he was too neurologically intact to consider removing part of his brain, but they wanted to talk to us about starting the ketogenic diet.
I actually thought these doctors were crazy. How could my son’s diet control his seizures? This diet is high in fat, extremely low in carbohydrates and protein, and completely devoid of any type of sugar. Every morsel of food (what little he would get) had to be weighed by the gram. How would we ever be able to do this back at home with the normal chaos of life?
A couple months into the diet, I was trying to tune-in the kitchen radio and Michael said “That’s what my head was like, mom. It was fuzzy before and now it’s getting tuned in to the channels.” We were elated that the diet had stopped his seizures and he was on no drugs, but we had no idea the diet was, as Michael said later, “sweeping dust out of my head.” In fact, his hearing was even hypersensitive for a few months, I believe as his brain adjusted to its newfound abilities.
It took a while to get acquainted with the diet’s intricacies. Just like anything else, once you’re used to things, it becomes easier and more comfortable to deal with. We were able to take family vacations to Florida and Cedar Point. It just takes a little more planning and packing. On the flight to Florida, I took a shoulder-strap type of padded cooler as a carry-on filled with his heavy cream and some foods so I could put a meal together just in case. Just planning ahead for his meals (which were actually his medication) made all vacations a huge success. Similarly, we thought of ways to handle Halloween candy, birthday parties, family cookouts, etc. It’s amazing how creative you become when it’s so important.
Michael was on the diet for three years, with no seizures. He then had one seizure in October followed by two seizures the following October. This was without medication and without the diet. We pursued allergy testing as allergies can lower the seizure threshold. We learned that he is terribly allergic to dust mites, which correlates with the October seizures as that is usually when people are turning their furnaces on here in Indiana which have collected dust over the summer months. We treated him appropriately for the allergy, and he has not had a seizure since.
Michael passed his driving test the first time he took it. He also graduated from high school, also having passed the rigorous State standarized testing, and received his diploma. These were things we were told he would never be able to accomplish. He has taken some computer courses and is currently a photo specialist at a local drugstore. He’s a wonderful person who brightens the day of everyone he comes in contact with. He has more determination and perseverance than most. If he wants to accomplish something, he works hard to do it. We know the diet literally saved his life. Mike says it helped make him the person he is today.