But it so often seemed that every bit of good news was always accompanied by yet another challenge. Butterfly gradually became very lethargic. She was becoming a couch potato and she started complaining at regular intervals that she wasn't feeling well, although she wasn't able to be specific about what was wrong. There were dark circles under her eyes, and those eyes had slowly changed from bright blue/grey to a just a dull grey. All she wanted to do was sleep. She was putting on weight from the lack of activity, as well as her pubescent age. All and all, this was so very unlike the hyperactive kid we knew and loved. Clearly this wasn't just a stage. Something was wrong.
At this time, I was participating on an internet forum for homeschoolers. Many of the other parents on there had kids with similar challenges as Butterfly, so it was a fantastic source of encouragement, as well as an information exchange. One of the other moms sent me an article about a health problem called, Leaky Gut Syndrome. When I read it, it sounded exactly like Butterfly. *Leaky Gut is the inability of the digestive tract to absorb certain proteins and minerals, such as calcium. (Which also contributes to weight gain.) It appeared that Butterfly had developed an inability to digest bovine dairy products. Now, Bud loved cheese in particular. She had so many intolerances growing up, I don't know what I would have done without it. But it certainly seemed at this point, that it was giving her some very profound problems. There was really only one way to find out.
There was no point in going to the doctor. He would probably only refer us to the pediatrician again ~ another exercise in futility. Butterfly's problems were clearly quite beyond him and he had already demonstrated an unwillingness to inform himself. We were on our own. But Bud was old enough that she had to be a willing participant in the experiment. I mean, there was nothing to stop her from going to the fridge for a piece of cheese when I was busy elsewhere if she wasn't on board. So we discussed it, and she was very simply at the stage of not feeling well that she was willing to try anything, even if it meant giving up her beloved cheese.
Alternative dairy products were not new to me. I had been on a dairy-free diet for years because of the colitis. It just wasn't something I always pushed onto my family. But now I stopped buying ice cream and bought the soy or rice alternative. I had been making chicken stroganoff all along. I switched the recipe from beef to chicken (because I couldn't have red meat), used chicken stock and tomato paste for the sauce, and used soy sour cream at the end. There were mushrooms and broccoli in there, and I served it on a bed of whole wheat noodles or brown rice pasta. It was a family favourite, so I made sure to make it a couple of times during our dairy-free two weeks. Nevertheless, keeping a growing girl happy without dairy was a tad more challenging than just making the adjustment for myself. After much experimenting, some of it blech-worthy, according to Bud, we settled on some alternative products that she liked, such as soy vanilla and chocolate milk. Both went well on whole grain cereals. She didn't like the dark, milk-free chocolate so much, so I focussed on dried fruit snacks for treats. Fruit and peanut butter had to fill in for those cheese snacks too, etc.
By the end of two weeks, the change in Butterfly was once again amazing. The dark circles were gone from under her eyes, which were again bright and vibrant. Her energy had returned to the point where she was driving me crazy. This was good! She had stopped complaining about dull, non-descript pain, anywhere. We had obviously found the source of her problem. But she was not happy. Butterfly LOVED her cheese, and when she realized what the results of our experiment meant, she became very resistant. She refused to eat ANYTHING if she couldn't have a cheeseburger and some mac and cheese.
I hated to do it, but it was moment of truth time. I bought her an organic mac and cheese mix, and some cheese slices and made her the mac and cheese for supper that night. She didn't look too good, but she didn't complain. She got up late the next morning and asked for her cheeseburger. I could see what was coming, but I said nothing and got to work on her burger. Within an hour after eating it, she looked very ill indeed. She was holding her stomach and kept rolling into a fetal position on the couch. She was in a lot of pain, obviously, and she kept saying her stomach hurt a lot. She was in so much sharp, terrible pain, that she actually asked to go to the hospital. But my instincts told me that getting into the car right then would be a very bad idea. Sure enough, within ten minutes of this, she upchucked. And I mean... now I don't want to gross anyone out, but I had honestly never seen any kid barf that much all at once in my life. When I thought she surely must be done, she barfed some more. I was half expecting a lung to come roaring out.
*Info on Leaky Gut Syndrome posted on Resource page