Saturday, February 02, 2008



As if the logistics and financial implications of changing their diet was not already enough strain, there is a withdrawal period for ASD kids when they go Gluten & Casein Free. You may recall from my previous post that for kids with a porous gut, gluten and casein proteins enter the system largely undigested and as a result have a Morphine-like effect. As a result, kids get a little buzz, which causes or at minumum contributes to more stimming and autistic behaviors such as spaciness, inability to concentrate, poor communication, etc. For more about this opiate effect and consequential withdrawal once offending proteins are removed from diet, click here.

So, like any good drug addict, my kids rebelled with a vengeance. Ok, so rebel is a strong word. I assure you, their behavior was not intentional or willful, but it was definitely DIFFICULT. After approximately 48 hours on the diet, there was trouble in paradise. They were stimming significantly more. Tantruming significantly more. Overall, all 3 were just grumpy and sensitive. As the days wore on, the behavior and utter crankiness got worse. By 10 days in, I was not sure we were going to survive th withdrawal period. They were just awful to be around, and the stimming was intense and frequent. They were very demanding and nothing made them happy. In short--they wanted a fix.

But the worse they behaved, the more I became convinced that there was definitely something happening to them physiologically as a result of removing gluten and casein from their diets. They were not conscious that their food choices had changed, so they did not rebel in that way. They continued to eat just fine. This is largely a result of age. In another year, this would have been a major problem. The only thing they missed was cheese, but at the time, they could not ask for it. They simply attacked us if they saw us eating it. So we stopped eating cheese in their presence. Problem solved.

Then something interesting happened around day 12. The bad behaior began to gradually wain. It did not leave with the same gusto in which it arrived, but the changes were less subtle than I had anticipated. Each day was a little bit better, and day by day my darling children were coming back to me. At 3 weeks out, I was simply happy to be surviving and to realize that I could pull this diet off and my kids would not starve.

After a few more days, Kynsie's personality really began to blossom. She was more social and interactive with her brothers and her attention span was getting better. Kynsie's eczema, which had been a persistent battle, was totally gone. Not a trace. Within a few weeks, I weaned her off Prevacid with no problems. (FINALLY!)

Kyan too was more...clear-headed. The fog seemed to be lifting and I could see that the lights were on AND someone was home.

Braylen's vocabularly exploded. Within weeks, he was counting to 10 and knew most of his letters, shapes and colors (including pink and gray). In addition, his eczema which had been pretty bad, was significantly reduced. He still has some, but only on his face. His arms and legs are clear most of the time. We attribute the remaining eczema to allergy to dust, grass, corn, and carpet fibers as those things tend to cause flare-ups.

It is important to mention that it takes approximately 3 weeks for casein to exit the body fully. This is 3 weeks after the last intake of casein in food. So these results were largely a result of the Casein removal. Gluten takes more like 6-8 weeks to fully leave the body, so it would be a few more weeks before we could see any results from that change.

Weeks passed, and Braylen's vocabularly continued to grow. He was beginning to sing the words to his favorite songs like Itsy Bitsy Spider, Row, Row, Row Your Boat, Old McDonald, Twinkle Twinkle Little Star.

In addition, Kynsie began talking. She wasn't saying many words, but she was saying some. In addition, her receptive language was increasing. She understood much more of what we were saying, and responding accordingly. For example, I'd say "Sit on your bottom" or "Get in chair" and she would comply. This might seem like a small step, but in our world, this was HUGE progress. She also began to do significantly better in therapy. She no longer spent 45 minutes of the 50 minute session screaming. She was actually participating in therapy willingly. On top of that, she began going to therapy by herself. Up until this point, Barbara or I had to attend therapy with her, and even then she was largely uncooperative and miserable. So now the door was open for therapy to actually be productive because she was participating and no longer traumatized. All of Kynsie's therapists were rejoicing and VERY SUPPORTIVE of the dietary changes. Mrs Nancy kept sayins (and still says) "Who is this child, and where is your daughter? I just can not believe the difference in her". I began hearing those words over and over from all of her therapists; from my parents; and from other caregivers--Barbara & Patty.

Kyan was also making more progress in therapy. He was beginning to play more appropriately and stimming significantly less than before. He also cried less during transitions and seemed more at ease overall. He also began talking. Kyan could say: ball, duck--quack-quack; cat Ow! (toddlerease for meow); dog-wuff-wuff!; and Melmo for elmo. We were delighted! He also began to want to know the names of things. He would bring us items or toys and wait until we told him what they were. his eye contact and social interaction with caregivers, therapists, my parents, and his siblings was improving.

Across the board, everyone agreed that GFCF diet was a great decision and a big success.

So it came time to get re-evaluated by their therapist to re-evaluate each of the children to determine what progress each of them had made in a 6 month period. Braylen had progressed significantly in all areas, and only barely still qualified for services. In many of his testing areas, he was at age-appropraite levels with a handful of skills that were ahead of his age.

Kynsie had gained 10 mos of speech in a 6 month period of time. In other words, she was closing the gap on her delays. We were thrilled! She was still measuring significantly behind, but the gains were fantastic. She also made gains in social and play areas as well, though not as significant as her speech gains.

Kyan had made approximately 6 months gain in 6 months time in speech. That would be great under normal circumstances, but since he was behind his peers 6 months ago, that means he was still lagging behind. He was not closing the gap on his delay, and we needed a new plan. He had made some steady progress in other areas, but all therapists were concerned that his speech simply was not exploding like Braylen's or Kynsie's. We had to go back to the drawing board and see what to do next.

I scheduled a phone consultation with Doctor Adams so we could make a plan.

in my next post, I will list our groceries and give you prices. It will blow your mind. After that, I will talk about our next round of medicines & supplements.

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