I decided just before Mother’s Day to try the Gluten-Free diet with Kevin. I had bulked at this diet any time someone asked me if I had tried it with him. Every time they’d asked they’d go into dairy products. Does he eat a lot of cheese; drink a lot of milk, and so on. They’d also ask does he have any bowel problems constipation, diarrhea and stomach problems. Kevin didn’t fit those areas. Shoot Kevin is hardly ever sick and if he is it’s for one day and the rest of us have it a week. So, what made me change my mind? One simple answer, Pizza. I always knew he was getting a lot of wheat, but this year at school he started eating pizza everyday and would not change for anything. I saw the prices for the gluten-free breads and thought “No Way!” But, you know how you can have that little voice nagging at you in the back of your mind? Well, I did and it would not go away. It kept saying “He eats a lot of pizza!”
This is not an easy road to take. I don’t have the money to spend feverously by any means, but I have to try it. The first couple of days I saw better eye contact and he was saying a few more words. Kevin is not a conversationalist at all. There are days when you can only get a few words out of him and others he’ll answer you right away. But this was different. He came off the bus one day saying something about dogs. I asked him what he did at school like I always do and he started to say he had pizza, but stopped himself and said sandwich. I asked him if he had gone on the computer and he told me Animal Kingdom, lions, tigers and bears. I laughed and said “Oh my.” Then we had a setback. I think I gave him some gluten without realizing it. I’m still learning and don’t know all of the additives to watch out for. I noticed he was waving his arms around more than he had been in the past few days. So, I checked the rice snacks online and they weren’t listed as a safe food. Hmmm. I did more digging and found out that he was still eating gluten for breakfast at school. Thankfully, his teacher has been great to work with and said she’d make sure he didn’t eat any biscuits or pancakes anymore. Have I said this is not easy? J In the mean time I emailed his father and told him what I was doing. Kevin visits him and his wife quite often and I needed them on the same page. This past weekend he came back from his visit and the whole way home he could not stop waving his arms around. I really wanted to cry, because I thought this was going to help him. I guess I should explain my goal for Kevin before I go any further. Kevin has been a meds since the age of 12 for agitation. He’s currently on Prozac, Ativan and Risperdal. Over time the side effects from the Risperdal have become nerve racking. Unfortunately it’s the one med that helps with his agitation. The doctor has tried several different meds with him and he’s had to go off of Risperdal for a year when it stopped working. The only thing that worked was Geodon. The side effects of that were worse and I was so happy when we were able to change him back to Risperdal. Mind you not everyone is affected the same way by these meds. But, when his doctor said a few weeks ago that he would be on Risperdal the rest of his life I thought “Not if I can help it.” That was my changing point.
Back to his visit with his Dad, it turns out they had grilled chicken with Teriyaki Sauce. They’d also made him a salad with a dressing. Some dressings have gluten. At this point I don’t know what dressing he had on his salad, but I do know that Teriyaki Sauce has soy sauce in it. Soy sauce is a no, no and they had no idea at all. Like I said I’m still learning and they’re even newer to this.
It’s depressing at times and I don’t know how long it takes to really know if this is going to help his mood swings or not. That’s what I call his agitation. It just sounds better to me. Everyone has them and some of us have them a little worse than others. So, bear with me folks as I take this journey with my son. A whole new week is starting and I feel like I’m starting over. Wonder how many times I’ll think that. J
May 16, 2011
If gluten removal is followed by a deterioration or regression (a withdrawal-type response), stay the course! It almost certainly means that your child will benefit. This may seem like a lot of work for an uncertain payoff, but in the lifetime of your child it may be the most important step you take!
But my child's immune system seems to be working unusually well - he is rarely sick.
What we're describing is not an immune deficiency, but rather an immune dysfunction. Many (although not all) seem to share a history of ear infections and spitting up as babies (possibly milk-related), or of chronic diarrhea, constipation, or loose stools (possibly wheat-related.) Other parents note that their autistic children seem to be the healthiest members of the family. In this case, it has been hypothesized that the immune system is too aggressive and ends up turning on the nervous system. This may explain the presence of anti-myelin antibodies in some children, and may also explain why some have immune issues like multiple allergies but do not respond well to dietary intervention.
The coolest thing just happened. I had gone outside and lit the fire for dinner. Our dog Angel, who I often call Puppy, had followed me out. When I came in she had stayed outside and I didn’t realize it until I heard her barking. I said “Did I forget the dog outside?” out load, but really to myself. Kevin got up to let her in. Kevin doesn’t do that on his own, but that’s not the best part. She wasn’t at the door. She was out wondering around in the backyard, so Kevin decided to call her. Very softly he was saying “Here Puppy, here Puppy, come here.” Several times mind you. I was shocked and tickled watching him. I walked up behind him and told him to call her a little loader. He did. Not a lot loader, but it was loader. He was trying to clap his hands and at one point he tried to whistle with his two fingers. I can’t even do that. Jeff, my brother, got up to see what was going on. He couldn’t believe Kevin even opened the door to let her in. Well, Kevin stayed there calling for Puppy until she finally showed up from her wanderings behind the shed.
May 17, 2011
I can’t help but to think that this is working for Kevin. He’s still doing his arm wave, but a little while ago he was pacing around the house and I said “I have something for you. Do you want to see?” Kevin’s reaction was “Uh-Huh, of course.” I pulled the box of Blue Bunny Sweet Freedom Krunch Lites out of the freezer and while Kevin was twisting his head around to get a better look at the box he said “What’s this?” Krunch Lites were a big hit and the distraction of the treat helped him to relax for a few minutes. My understanding is that between the Casein Free and the Gluten Free diet I have picked the harder of the two diets. Let me explain that Casein is a protein found in some dairy products, where as gluten is a protein found in wheat, barley and rye products and the range of foods to be eliminated with the Casein Free diet in much smaller than the gluten free diet. And please forgive me if I repeat myself or if I forget to explain something fully. As I’ve said I’m learning, but luckily there’s a wealth of information out there for all of us to read. I started with “Living Gluten-Free For Dummies” by Danna Korn. I’ve also found that many stores have posted lists on their web sites of products they carry that are gluten free. I do have to add that when Kevin told me about going on Animal Kingdom today he said “Loins, tigers and bears oh my!” and then he went into his usual rendition of animals and dinosaurs. It was the “oh my” that I loved hearing.
