Sunday, January 2, 2011

The Back Story

I've got some new things to talk about, but first I want to explain where I am coming from.

My mother died an unpeaceful death from lymphoma, which I have no doubt was the result of undiagnosed celiac disease or non-celiac gluten sensitivity. During the treatment for cancer, she had runaway diarrhea to which the doctor's response was an annoyed suggestion to get Lomotil. There was no nutritional counseling whatsoever, even though she had an intestinal cancer. Six months before her death, before the lymphoma diagnosis, she was gravely ill with sudden weight loss, night sweats, and extreme pain -- so a doctor operated on her back, ignoring or just not bothering to notice her abdomen which was distended with a large tumor.

My son at age eighteen months got a double ear infection (a possible symptom of gluten sensitivity), and was put on antibiotics. He was also given a series of vaccines while he was on antibiotics. The ear infection never really went away, he was given course after course of antibiotics, and before long, he was diagnosed with Asperger's Syndrome and PDD-NOS. The developmental pediatrician told me there was no cure and that we should start him, at age 5, on antidepressants in an attempt to manage symptoms, which in his case -- at age 5 ! -- were suicidal ideation, very frequent rages in which he screamed about wanting to kill people, rampant inflexibility, and in general just a very unhappy and physically unwell boy.

Well, I had seen what mainstream medicine had done to my mother. I had been too unhinged with fear and grief, and her illness and death happened so quickly, that I had not been able to pull myself together and try to do anything to help. But with my son, at least eventually, it was different. In his early years, on the many trips to the pediatrician's office or the emergency room, I had a nagging sense that what the doctors were doing was not helping. If I had been braver, and not wanted the responsibility to lie in someone else's hands instead of my own, I would have realized sooner that not only were the doctors not helping, they were making my son sicker and sicker.

But I did figure it out, finally, when he was about five years old. I stopped taking him to the doctor and began searching on the internet for ways to help him. Even in those early years of the autism epidemic, there were a lot of groups online, mostly consisting of mothers, all of them groping for some way to help our sick children. We didn't have the luxury of published double-blind peer-reviewed studies (and of course the published peer-reviewed part was proven to be corrupt and unreliable anyway), we didn't have much guidance at all except trial and error and a few non-doctors who were possibly nuts or geniuses.

So we tried a lot of different stuff to get our children well. Most of what we tried would have been unfamiliar at best to our pediatricians or family doctors, at worst it would have been scorned. We tried different diets, we tried chelation, we tried all manner of supplement combinations, probiotics, antibacterials, and anti-virals. We relied on our own reports of what was working and what was not. We clung to anecdotal evidence because that was all we had. And eventually, slowly, my son got well. So that now he has no diagnosis and no symptoms of autism at all. Zero.

All of which is to say: I don't trust mainstream medicine. I think it claims more knowledge and expertise than it actually has, I think it claims much more authority than it deserves. And my other point, which will be clear in my next post, is that I am unafraid to try things that are not mainstream, that sound perhaps kooky, that have nothing but anecdotal evidence to support them. I do the best research I can to see what are the possible negative outcomes of a treatment -- and if the harm is negligible, I say: why not?

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