Logan was diagnosed with epilepsy in January 2011 at the age of 18 months. For a couple months, he had these extremely minor shakes, which we called the willies because we thought it was nothing. It started getting more frequent so we video taped it and took it to the pediatrician who thought it was nothing as well. When it got worse and he even fell, we took him to the Children's Hospital in DC and got an EEG scheduled immediately and received the epilepsy diagnosis. Our doctor was so kind and explained that most kids are treated with medicines and it's no big deal.
After trying Keppra, Oral Prednisone and Topamax without success, we realized it IS a big deal. We ordered Logan a helmet because he was having drop seizures, in addition to his initial absence seizures. As Logan's father and I are both CPAs, we immediately started charting his meds, seizures and sleep. We found this analysis extremely useful throughout his treatment. We even shared it with Dr. Vining at Johns Hopkins. Unfortunately we aren't able to get a super clear diagnosis. Dr. Vining was confident Logan had Doose Syndrome, but our doctors at Children's had at one point mentioned Lennox-Gastaut and another Epileptic Spasms. We are even unclear if his drops are tonic or atonic or both. We have learned to live with this unknown, but it was so frustrating initially.
Logan is developmentally delayed in his communication, speech, social and cognitive. But his climbing and other gross motor skills are almost extraordinary. We started him with early intervention as soon as possible. He will be mainstreamed into pre-school very soon. He did have stitches on his forehead from one drop seizure. Otherwise, Logan is such a sweet and fun and extremely active kid. His older brother, Aidan and older sister, Chloe cannot keep their hands off him. We love to see him progress, even if it is excruciatingly slow. If we could get him to sleep through the night, we would be over the moon.
Since the 3 treatments did not work, the doctors really wanted to try Depakote as soon as he turned 2 due to the risk of liver toxicity before the age of 2. But Colin and I wanted to push the ketogenic diet as we were so inspired by other parents on the Doose yahoo group. We were actively engaged in Logan's care and treatment options and continue to drive the bus. Logan started keto on 5/9/11 and had moderate success (50% reduction). He was extremely acidotic in the hospital due to the combination of Topamax and the diet. But adjusted nicely to the diet. We had to try many foods before we settled on the fact that Logan likes to eat with his hands and baked goods are much better for him. We weaned the topamax and seizures skyrocketed higher than pre-keto. We realized Logan needs to be pretty ketotic to get control, so we've been adding MCT oil (again thanks to the yahoo group) and are back to our 50% control. We may go up on the ratio. We may add depakote but one change at a time has been painfully slow and definitely the right decision.
We are also still trying to evaluate what's causing his epilepsy, but my expectations are low that we'll find anything. SCN1A was negative. Just got blood drawn for Oligo Microarray and POL-G, so we will see. Until we understand more we are trying to keep our heads up and treat the seizures.
We live in Annapolis, Maryland, which is a small, historic town on the Chesapeake Bay and is less than an hour from Washington, DC.