So it's been a pretty full week so far and we still have kiddo's birthday weekend ahead of us! On Monday we had kiddo's 10 year annual appointment with his pediatrician. It would be our first check in since going completely gluten-free about 5 weeks ago. I was nervous to see his doctor who said to kiddo's other parent that doing gluten for 4 weeks was fine but no more, but told me that a gluten-free diet was perfectly healthy. Needless to say, I was concerned about what his actually opinion was on the subject.
When we arrived the nurse was pretty quick to get his back and we sat and waited and kiddo's doc finally showed up and looked over his weight and height and asked about how his eating was going. I had seen that by their scales, he had lost a pound of weight. But his doctor wasn't concerned, he knew we were also working on weaning him off his feeding tube and said that there was some leeway on his weight while we weaned. I told him I had talked to his former dietitian at UVA where he went for a feeding clinic a few years ago as well as his current nutritionist locally. Both seemed to think that doing gluten-free was fine and if he didn't lose more than 10% of his total body weight weaning from the feeding tube we were in a good place. I showed the doc our GF Food Journal where I track every morsel of food that passes kiddo's lips. He seemed pretty impressed with his oral intake.
After the doc did the rest of his physical on kiddo, he said that he was doing very well and that if the gluten-free diet was working well for him then we should just stick to it. Because of problems with communicating this before among the involved parties I asked him again, "so you're saying that the gluten-free diet is good and healthy and we can continue it?" He said "yes, absolutely. We will run a panel on his blood and see if there is a gluten intolerance, but as far as I am concerned he is doing well on it." Yes! I got the medical affirmation I was looking for and we were off.
I know that the gluten-free/ casein-free diet is controversial and no one will say that it could have a real and definite impact on a child with Autism. I know well that making a diet change on a kid who is already very picky and rather low on weight and getting supplemental tube feedings can be challenging. But I also know that I do want to try everything that I can to try to help my son without the help of more medication. After his first full week gluten-free, he stopped gagging and retching over night, a common if not daily occurrence and sign that he was having trouble emptying. Since that week he came off the anti-reflux medication and medication to assist in his emptying. That change alone is enough to make me believe this change in his diet is helping him.
Today kiddo and I headed north to visit his nutritionist. Before we left I wanted to check his weight, which he track about once a week at home. He stepped on the scale and the number appeared, 60lbs.! I could not believe it, he has never been 60lbs.! I was concerned at the pediatrician with what appeared to be weight loss, but also knew that they use one of those really archaic scales. I was hoping that the number was not accurate on Monday and today it seemed that I was right. That meant that within the last 5 weeks of gluten-free he had gained 2 lbs.! I was ecstatic, but I thought maybe I should wait to see what the nutritionist had to say and what his weight was there.
We arrived and checked in. The nurse called his name and we were headed back. First things first, weight and height. It displayed metric so I asked what it was, my confirmation- 60lbs.! I was so incredibly happy, I nearly skipped to the exam room and kiddo thought I was insane. To him, obviously it means nothing, but to me it means everything! A few people had scrutinized me for trying gluten-free for him because he would most certainly lose weight, but he was gaining and eating and doing so well! When his nutritionist arrived I handed her the food journal and she read through and was smiling and shaking her head. She couldn't believe how well he was eating and showed me his dotted plots on the growth chart and its upward curve. She said that she thinks that we should go ahead and remove the second can of Pediasure from his diet and help him get more of those calories by real foods. With the addition of a vitamin for some balance, she said to just keep on doing what we are doing because it is going well.
So here I am now, working on some things for kiddo's birthday party this weekend, a Mario Kart affair, and I can't keep the smile off my face. I can't believe that I am actually doing this and making it work and I am so proud of my little man. He doesn't know it, but its been hard work for him too.