Kat's Autism Story

 

   

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Allergy Testing

 

child with autism crying in a chairAround the same time I was trying to get educated about allergies, Dr. Rapp wrote the book Is This Your Child? When I read the book I was inspired. If all it takes is to alter her diet and environment and her behaviors will go away, we could do it!

We made many changes to our house. We got rid of carpeting and put wood floors throughout. No curtains, no plants, no books or stuffed animals in bedrooms. I started to wash all bedding every week including pillows and comforters. I cleaned and washed the bedrooms with water and special products. When I say "washed the bedroom," I mean everything which included doors, floors, furniture, picture frames, window sills, and every nook and cranny where dust could be present.

We spent hours every week going through allergy testing. It was not easy to get her tested. Kat would get a shot, and a few minutes later, the nurse would check it, adjust the amounts, and give her another shot. It was hard to hold her at first and it was tough for the staff and other patients to put up with her screaming. But after couple of weeks she got used to it.

There was something to it, since strangely enough depending on what she was tested for she would sometimes react to the antigen behaviorally. After some of the antigens, she would go all over the waiting room trying to climb on the chairs, walking from chair to chair. It was impossible to keep her still. Then, she would get another dose of the same antigen and she would almost instantly calm down and start doing a puzzle on the floor. Then another antigen, and back again. Sometimes she cried and sometimes she was just sitting there. I was convinced that allergies definitely affected some of her behaviors.

After all the testing, we realized she was allergic to practically to everything. The only solution was to move to another planet? Well, we did not get that drastic, but close. Our freezer contained a box of antigen vials. There were so many of them! Each vial contained multiple antigens. We used a syringe to measure each antigen and try to get her to hold it in her mouth for a minute. I tracked Kats behaviors and measured her pulse with a stethoscope after each vial multiple times a day. Each time her behavior changed we had to get the vial adjusted. After many months of vials and tests and over $10,000 of costs that were not covered by insurance, we gave up on antigens. It got so confusing as to what she was reacting to that we decided to focus on the immune system instead.

Megavitamins was our next hope for a cure from autism. We did those for another phase. Our kitchen counter was covered with bottles and boxes of all sorts of vitamins. A daily schedule of 10-15 vitamins and supplements was another routine we followed for months. She took garlic supplement daily and one day I realized that Kats skin smelled like garlic.

We tried Nystatin, which tasted awful. To give her Nystatin, we had a plastic syringe and could not hold her physically. We had to wrap her in a sheet her arms and legs so that she could not move them, and even then she screamed and squirmed so much that it was impossible to make her take the medicine. By the end of the ordeal, we usually were wearing a coat of Nystatin, Kat was covered in it, the floor, and the sheet and we may have been successful in giving her few drops.

Along with vitamins, we made diet changes. We put Kat on a gluten free diet. That was very difficult since Kat would only eat white food. Her diet consisted of cereals, white-rice, white noodles, bread, chicken, ice cream, and cookies. She did eat some fruits, but her ears and cheeks would turn burning-red afterwards. She refused any other foods by screaming spitting, gagging and closing her mouth if you even brought foods close to her. This is probably why her immune system was so dysfunctional since she refused all vegetables.

The diet was not just difficult for Kat. I did not want her to be the only one who suffered through the diet. We went through all our cabinets and pulled out everything that contained: sugar or sweeteners, gluten, preservatives, and coloring. Our cabinets were empty and ten shopping bags of food we gave away. At that time it was difficult to shop. Most supermarkets did not carry products that met these requirements. We had to shop in health food stores which can be very expensive. We had to buy organic meats that did not contain preservatives. It was a major project. Kat would refuse to eat a lot of the stuff we made. She lost a lot of weight and started to look like a child from the starvation ads.

Bridget was not happy with the diet either. She was only seven then. It was hard for her to understand why we all had to do this just because of Kat. But I wanted to improve her health too, since she kept getting bronchitis and was always sick as well. We tried to make her feel better by taking her out. Weekly her dad or I would take her on sugar dates. I became fanatical about healthy food. I drove the whole family nuts. If Tom bought any foods that contained even slightest amount of "forbidden" ingredients, I would freak. If Bridget had candy at school from the teacher, I would not let her have it. Even on Halloween, Bridget was allowed to go Trick-or-Treating. But when she brought the candy home, I would let her pick 10 pieces and paid her for each piece that she would not be able to have. I believe she would probably rather have the candy than the money. I would ask Tom to take the rest to his work. I also believe that he didn't really share it with anyone. He probably just kept it in a drawer and ate it secretly.

Amazingly enough, both girls got healthier at the same time. Bridget's asthma went away along with Kat's ear infections. But Kat's autism did not go away and Bridget resented the diet restrictions for a long time. She probably still does.

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