We are back from a great trip to Boston and feeling a little overwhelmed with life at the moment. We are fortunate to have family and friends in Boston and had a very nice stay with my Aunt Heidi and Uncle Lorne and got to catch up with my cousin, Robert, as well. We tried to keep the kids sane as best we could, and they loved going up and down all the stairs in the house, playing in the pool and petting the neighbor's dog. We also had lunch with our friend, Kristin after the appointment with Dr. Eskandar on Monday. Another friend, Helene, was visiting her family on Cape Cod and volunteered to entertain Aria on Tuesday while we met with Dr. Thiele -- I can't thank Helene enough for this because we ended up being in Dr. Thiele's office for 4 hours and it would have been really rough with both kids.
As for what we learned, we are still sorting everything out. Both doctors were very impressive which doesn't help to make a decision easier, but it's a nice "problem" to be choosing between two such impressive teams. The neurosurgeon, Dr. Eskandar, was very down-to-earth and talked about the surgery process at Boston which is a little less aggressive than NYU's. Dr. Thiele sat with us for a long time and really impressed us. She is so passionate and knowledgeable about epilepsy and TSC and shares information freely. While we were in the office Evan had about 5 seizures so she got to see first-hand how his seizures develop. She also had us meet with her dietician to start Evan on a Low Glycemic Index Diet (think Atkins or South Beach) which is a little less restrictive than the Ketogenic Diet.
We have to send the dietician a few days of logged food intake and have some baseline blood work done and then we'll start Evan on it. It won't be fun, but with the number of seizures Evan has every day, it shouldn't take long to know if the diet is having any positive effects. Now we just need to figure out how to make sugar-free ketchup, chicken nuggets with almond flour batter and french fries out of cauliflower!