So, we tried IVIG for six months, and while it is doing a bit of good in between infusions, by about the third week Seth’s tics start happening again. His strep titers are still quite high. It is more of a band-aid and not getting to the bottom of Seth’s PANDAS problem.
When we first moved to Cleveland, we were on the Specific Carb Diet, (and had been on it for about 18 months, and wheat free before that) to help Riley with her digestive issues and hopefully her anxiety. It didn’t do much for her anxiety, but we were all so much healthier than we are right now. At the risk of TMI, I have two children who regularly clog the toilet with the size of their “deposits.” It isn’t normal to look at a little 55 pound kid, and think of him shitting a brick. And yet, he does. We plunge. We plunge much.
Riley’s intestines have always been off. Constipation is only kept in check with high doses of daily Magnesium. One missed dose and we have trouble.
We moved to Cleveland five years ago because the school system in Virginia SUCKED as far as autism understanding. Moving was stressful. The school we moved for didn’t work out and we pulled Riley out of it after two weeks when I picked her up to find every blood vessel in her eyes broken from crying so long and hard. We quickly found another school that seemed great, rushed to buy a house to live in the district, and the teacher Riley would have had, blew an abdominal aneurysm first week. During all this, an M.D. we began working with here convinced me that we didn’t really need the diet, she’d done some work with us to eliminate allergies, and those foods weren’t “allergies” for us, yada yada. I knew better, but I just wanted to be normal for a minute. I wanted to NOT have to make every morsel my family ate from scratch. Life was so stressful! We weren’t seeing many behavioral gains in Riley, which was really the big thing we were looking for. I didn’t have a freaking dishwasher. Or AC. And the oven has to be on all the time if you are eating this way. It was all too much. My arm did not need any twisting to toss it all out the window.
We kept up with eating healthier than probably 95% of America, but wheat and sugar quickly became addictions for all of us. I went into early menopause at 38 and quickly put on 15 pounds. Todd probably gained twenty. And Seth. Seth’s health issues began to show themselves in earnest.
So, we’re going back to this way of eating. I’ve been busy, clearing out my kitchen, starting over, researching recipes, cooking, cooking, cooking. Buying more chicken (and even some meat) than this former vegetarian can wrap her brain around. I’m making yogurt. Grinding nuts into flour.
I know it will become easier when I get into a groove. The hardest part is always social. So much revolves around food. Some people don’t understand. I don’t miss the raised eyebrows. The “is it a true allergy?” questions. The “can’t he have just one?” It’s hard enough to do the work of the diet, but to have to deal with other peoples’ skepticism….it just really blows.
Luckily I know other mothers here whose kids have food issues as well. It makes the kids feel less freaky.
Todd’s been hinting for a couple of years that he would like to go back to eating this way because he felt great on the SCD. He didn’t push though because he knows 90% of the work falls on me. Having spousal support for something like this is key. Knowing he’ll worship me keeps me focused. LOL.
We’ve talked with other families that have had success eliminating tics by changing diet. We want to leave no stone unturned. If this helps Seth, it will be worth it. If you want to know more about the diet or how a leaky gut can cause neuro symptoms and other health issues, there is a lot of free info on line. Start here for links and recipes. Or look at the GAPS diet, which is similar.
I’ll try not to be too self-righteous about it.
We’re going in.