Thought I should do a little update on this guy (who is now seven, soon to be eight!), it's about time. He is doing fantastic! Over four and a half years on a special diet and continues to be seizure free. No medicine required. The craziness that we went through is all a distant nightmare now. I occasionally have a fear that his seizures will suddenly start back up again, and all of this will be too good to be true. But I try not to dwell in fears. Instead I focus on the present reality that Atty is healthy and happy and whole. He is thriving, and doing well in school. He loves birds. He's super helpful and loving. He's a joy to be around. He gets to be completely him, without the frustration of seizures interrupting his reality. His seizures were so bad that they were ruining his quality of life, he was unable to function, about to have brain surgery and a g-tube. It's hard to imagine now when I look at his shiny happy face.
We are starting to branch out a bit diet wise. He eats some rice now and rice products as long as the ingredients are simple ones. We don't worry so much about starches and he eats beans and lentils (properly soaked). We've also tried other non-gluten grains like millet, quinoa, and amaranth. I might try buckwheat, sorghum and teff soon. He seems fine with these additions so far, but I make sure to focus on good fats and not too much grains and such still. It seems like when he gets too much he starts to get really whiny and we start seeing more behavior issues. It's my clue to back off. Still no corn, oats, refined sugars, dairy, gluten, and soy. We might try small amounts of non-gmo organic corn next. We probably won't be as strict about small amount of refined sugars as well. Dairy, gluten, and soy will stay out. Oats I'm on the fence about, I know you can get gluten free oats that are suppose to be safe and not cross contaminated, but I'm not sure I want to risk it. We already eat a whole foods diet as a family, with a GAPS focus so we will continue that, but we are not strict GAPS, we have found a balance that is working quite well for our family right now.
His seizures first started in January so this time of year always gets me thinking about it, and the warning signs we missed because we didn't know any better. Then in late spring I start thinking about his amazing diet and his seizures going away. :)
And now at this point the rest of the year I sort of forget there was ever even an issue. Which is nice because for a while there I had some post traumatic stress issues that I didn't think were ever going to go away! But time heals all.
Well that and his magic diet! :)