Clodfobble |
07-18-2009 03:56 PM |
Quote:
Dear Dr. _______,
I have a lot of lingering frustration over things I didn’t say at our recent appointment, both because I was too tired from the earlier labwork with [Minifob], and I was in a hurry to let my mother get back to work. Let me start off by saying I completely understand your skepticism of the biomedical treatments for autism, and skepticism is an excellent trait in a doctor. You do not want to be treating your patients on hunches and faith. But at the same time, it’s hard not to take it personally when you effectively insinuate that the things I am telling you I see in my son must be either coincidence or imaginary. I assure you, I am giving every treatment offered by Thoughtful House the same careful consideration I would give to any medical treatment, weighing the risks and evidence available. I am being rigorously objective in my daily documentation of both [Minifob's] and [Minifobette’s] symptoms, and whether each one improves or not with any given treatment. What’s more, I am taking videos, so that others can judge the difference for themselves:
Before the GFCF diet: http://www.youtube.com/watch?v=10XofXCoctw
After the GFCF diet: http://www.youtube.com/watch?v=BLnWlLO8p6A
I know that when you repeatedly say, “We really like M*****,” (his occupational therapist at ***** Rehab,) what you are really telling me is, “I approve of occupational therapy as a treatment, and it has studies to back up its effectiveness,” and the implication is that you don’t approve of the biomedical protocol (despite the fact that it, too, has many recent studies to back up its effectiveness, and you have biomedical books on autism on your own shelf in your exam room.) I know that you are not actually endorsing M***** herself, because the truth is you don’t know M*****—if you did, you’d know that she strongly supports the biomedical treatments, she knows that they make her own sensory integration treatments far more effective, and she has been particularly blown away by the immediate and complete change [Minifob] showed when I implemented the diet as strictly as I have (he and [Minifobette] are not just gluten-free and casein-free, by the way, but also following the Feingold rules of no artificial colors/flavors/sweeteners or preservatives.) Within two weeks, M***** was asking me to write down all my resources and tips for the diet so she could give it to her other clients who were struggling with implementing it. In fact, [Minifob’s] sensory issues, which improved only very slightly with therapy from January through March, completely disappeared after going on the diet, and now we are only keeping the regular OT appointments as social interaction practice for him, and in anticipation of [Minifobette] needing the sessions for herself once [Minifob] starts PPCD in the Fall. Because again, I know occupational therapy is effective at what it does, so I know [Minifobette] will definitely need some OT despite already being on the diet. But M***** and I both also know that the therapy will be quicker and more effective, because I am treating the other aspects of her autism simultaneously.
In addition, everyone involved in [Minifob's] PPCD program was also in favor of biomedical treatments before they ever met us, including the school psychologist and all four professionals who performed his assessment. When I told [Minifob's] teacher that he is on the GFCF diet, she said, “Oh wonderful, that means he’ll be one of my good kids.” They all know this stuff works because they work with autistic children every single day, and they know who is getting better and who isn’t. [Minifob] is not just “a lot calmer,” as you have acknowledged—he leapt straight from gestures and echolalia to 3-4 word spontaneous manding, with no learning curve in between; he started making eye contact with strangers; his physical and visual stimming are way down; his tantrumming is down to the level of a normal three-year-old, and the causes of those tantrums are now logical (because I have told him “no,” for example, rather than because he can’t get his cars to line up exactly right.) In the last two months he has already met half of his IEP goals, before ever setting foot inside the classroom. The one thing that has gotten worse is that the overall quantity of his echolalia has skyrocketed, but I suspect that is because he is now eager to talk, but hasn’t learned the social contexts of conversation yet.
I know that you have particular distaste for the idea that a yeast infection is somehow the root of autism, and rightly so—there is no one root of autism for even a single autistic child, let alone all autistic children. Yeast infections are championed by dirty hippies as the cause of everything from toe pain to cancer, and they clearly are not. But that doesn’t mean there is no such thing as a fungal infection—my husband has chronic ringworm on his legs, and it is treated with anti-fungal creams, and of course vaginal yeast infections and infant thrush are very real maladies. The truth is fungal infections are just one common comorbid condition of autism, along with many other gastrointestinal problems. Not all autistic children have chronic digestion issues, but mine do, as I have mentioned many times. And as it turns out, [Minifob's] stool and urine samples didn’t show a significant yeast infection, so the doctors at Thoughtful House obviously are not recommending that we treat as if he has one. What they did show is a strong Clostridium bacterial infection (another common comorbid condition, but one that doesn’t happen to have been picked up as a battle cry by dirty hippies, so it doesn’t get the same negative association.) Perhaps your position on this information will be 1.) the test results were inaccurate or falsified (again, they came from your own preferred lab down the hall,) or 2.) the infection is real, but it has no association with his autistic symptoms. But even if that were the case, why wouldn’t I want to treat an infection in its own right? I’d like my son to stop having chronic loose stools, even if his autistic symptoms don’t improve one bit. However, at every step of the way, when we have adjusted any aspect of his food intake or digestion, his autistic symptoms have changed as well (either for better or for worse; it is often a case of trial-and-error, not steady improvement,) so I am personally quite confident that treating his intestinal infection with an antibiotic will be no different. (I know you have suggested Lactobacillus acidophilus as a first step for both [Minifob's] and [Minifobette's] digestive problems—and that is also something recommended by the doctors at Thoughtful House—but he has been taking multiple doses daily for months, yet his labwork showed zero colonization of beneficial bacteria.)
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