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.
The fuel you give your body is so fundamental, I would look at that before anything else. Well don’t you for realising what’s worth revisiting and here’s hoping for a positive outcome. Happy thoughts and love xx
God bless iPhones!! That was well done you not dont 🙂
Oh, honey, I am so there with you. I’m sorry you’re facing this all over again, and I hope it’s simpler this time around and the health benefits outweigh the pain in the ass it is. We have pretty much adapted to it except that Eve is giving me push-back as a nearly-13-year-old who wants to CONFORM, DAMMIT! I know she ‘cheats’ when she’s at school or on sleepovers and all I can do is remind her to pay attention to how it makes her feel to eat things that are not good for her. I wish you much luck and hope that things turn around rapidly.
I am hoping and praying that you see wonderful results. I have been at this for years and years with my son. I often meet him at school for lunch. I can’t understand how kids function and learn when I look at what they eat on a daily basis. One way I overcame my son feeling weird in social situations is teaching him about nutrition. He knows the standard American diet is garbage. He wants to be a fast runner and he wants the ability to stay focused and do well in school and he doesn’t want to shit a brick either! We have been there…. I tell him what he puts into his body is the most important. He doesn’t talk about this with other kids – he thinks of his diet as his “secret power fuel” and so do I. Sorry you have to start all this cooking when it is almost 90 degrees…
Hats off to you, Michelle for your willingness to do whatever it takes! My kids feel like freaks because we have eliminated almost all added sugars, artifical colors/flavors and all junk foods from our diet. Kids make fun of their lunches, but they are quickly learning what happens when they eat crap. Now that I have gone vegan, it’s really getting interesting! I read the list of legal/illegal foods for the SCD and I was relieved to see that you can have some bourbon with your pork rinds while you watch the Kentucky Derby this weekend! 🙂
Michelle, I really admire you for making the decision. I have not read up on SCD (and frankly I’m scared LOL). I am pondering our next steps. It is painfully clear that Charlotte cannot tolerate dairy at all. It seems not even the most miniscule amount. She has behavioral problems from it. It seems like other foods affect her too but not as severely as dairy. And it’s generally not a one-time consumption that will bring out the behaviors, but if she has it several times over the course of a few days. Her behavior is so much better when we’re super strict. But then I wonder how much better could it be? Should I be exploring this more? Oy. Right now I’m focusing more on nutrition supplementing (like probiotics and B-complex) to make sure she’s just overall got the right nutrients in. I’m literally JUST starting. But I’ll have to think about what further dietary changes I could make. I feel there’s a strong food-neuro connection with her. I guess I’ll go read up on SCD.
Thanks for sharing this! (Oh and we know all about shitting bricks…)
I have a very dear friend and colleague in Wisconsin who has had huge success with biomeds and diet for her daughter with seizures and autism. She is quite passionate about it all — particularly when it comes to anti-inflammatories. While we did many intense dietary things when Sophie was very young, most have fallen by the wayside over the last decade or so. I’m starting to feel some nudges from the universe, though…
I am a big believer that food can make a huge difference. We never went SCD but have maintained GFCF peanut and egg free, mostly artificial dye free for ten years. It is worth all the time and energy as far as my boys go- and the time and energy are really not much anymore. I don’t want to overload you on info but I always want to alert people as they increase the amount of nuts in their diet to be aware of oxalates – http://www.lowoxalate.info/hope_healing.html . If your kids or you begin to have problems on SCD, or before you commit to baking with almond flour please look at the info. Email me if I can help in any way.
Riley-girl and I have the same, um, clogging issue… I have spent so many years trying to figure it out and deal with it! Doctors, specialist…no help. None. Maybe I’ll check this out. It has come up a lot in my search for answers.