sue1957

I'm new so hi! This posting has really touched me, a very very sad story of parents doing what they thought was right for their child. If there had been no reported cases of deaths from IV chelation (a better track record than some �conventional� treatments I can think of!) then perhaps the father as a doctor thought he was probably in a reasonable position to weigh up the pros and cons. I can understand why some wouldn't choose chelation and why some don't see autism as a disorder. If problems aren?t severe and there is a good quality of life it is one thing, but not everyone is as lucky. A lot of decisions some of us make in desperation are because the problems are so bad so early, or because we are so afraid of what might happen in the future when we are no longer around. Our decisions can also depend on what services are available locally for severely affected AS adults. We have looked ahead and thought about what will happen when our son reaches adulthood, that even whilst we are still around we can?t foresee everything and protect him. And we definitely can?t rely on the state. An adult relative lived alone locally with full family support, had a part time job with people who recognised his needs etc. It worked very well for several years. Unfortunately he was made redundant (as was everyone he worked with), and he couldn?t cope with the change. His symptoms worsened, and the family could do nothing because suddenly he had �rights� because he didn't hurt anyone else and didn?t self harm in the usual sense. He died in very distressing circumstances. And yes, our experience with J makes us desperate to find treatments for our son A. What is working at the moment has been very much simpler and cheaper than chelation, but in different circumstances we wouldn?t rule it out. We just don?t think that mercury, lead etc are involved in his case. A is still the same gorgeous child ? just without the rituals, phobias, anxieties, dark circles under the eyes, bleeding gums, diarrhoea etc etc. He sleeps better, smiles, laughs, has friends, talks to people, understands and makes jokes. He?s still A ? but much happier, but we know we?ve been lucky. Sue

From the age of 18 months til about 4 and a half, my son started by getting faddy, finished up food phobic. Had to eat same breakfast, same lunch, same tea, all white or off white food, done in a certain way, absolutely no crust on bread, cut in squares not triangles, certain plate etc etc. If a pea finished up on a plate then nothing on the plate would get eaten. He was also water phobic, hated going outside, if he did he had to wear "the hat." Would only wear dark colours, turns out he was light sensitive but just couldn't communicate it.Also water phobic. Found out he was sensitive to fluoride in toothpaste, (we don't live in a fluoridated water supply area). When we changed brand, within a few days he started to improve. Started eating a wide range of foods, became much less light sensitive, went out without the hat etc, became much less water phobic. Turns out some people aren't able to excrete fluoride properly, and it builds up and can cause problems. As the water isn't fluoridated we can avoid it, but if they ever decide to fluoridate our water then we would have to install something to take it out of the mains, or else move!!!! Sue