I FINALLY made the call to Bastyr University today. It is a natural medicine university in Bothell that has a great reputation and is respected in the medical community. They were able to get Hewitt in on October 6th with one of their physicians! We are really excited to finally talk with someone that will at least acknowledge that nutrition is affecting the seizures and get their input on our changes and hopefully even lend an ear to all of my research findings. My desire is for a medical student or a physician who does medical research to see the importance of this and take it on as a research project. I know it might sound far fetched, but I don't think these discoveries we've made are meaningless. Especially when there are so many children suffering from this same syndrome. So, between now and October 6th I need to conduct another survey on my group of parents (or about 20 other parents with non-doose kids) and have them answer the same questions for their non-doose children. I want to have this all charted out when I go in and I think it will hold more weight if I have a control group to compare it too.
Hewitt is still doing well, although he did have a few seizures last night and today after we accidentally gave him vegetable broth that had sugar in it. It's crazy. I have been saying for the last few days that I don't know if it's really the sugar/dairy connection...maybe it's something else. It's not something you really want to test out though because who really wants to see another seizure? So, when he had one at the dinner table we were scrambling to see if he had eaten one of those two things...and sure enough, he had. We had another opportunity to test our theory, this time involuntarily. I believe it now though.
By the way...there is sugar in EVERYTHING! It's really quite ridiculous.