Fluoride Alert newsletter

A Mother's Letter to FAN Members

Kyle's Story:

What I didn't know hurt him (part one)

I have so much to be thankful for, in the holidays and year round, but today I'm talking about my Fluoride Action Network heroes, which include not just the core of FAN, but also those of you who support them and those who work in your own communities to get fluoride out of public water.

I'm the mom of a delightful young man with autism, Kyle, age 30, who is severely hypersensitive to fluoride.   Sadly, I didn't know it for the first 14 years of his life and I didn't even know of the countless other chemical sensitivities.  We've traveled a very long and painful road together, his pain physical (and profound), my pain emotional.

His speech is difficult, but he shows me his love and gratitude daily.  He trusts me unconditionally because, in his mind, I fixed him.  I got rid of the pain for Kyle, yes, but I could never have done it alone.  Kyle doesn't know of the countless FAN workers and advocates who, through their expertise, helped me to figure out how to protect my son. Most of them have never met me, never talked to me, but their work lives through the fantastic FAN website (www.FluorideACTION.net ), newsletters and videos.

My eyes get wet and blurry just thinking about 1999, when Kyle was 13-14.  He was in pain constantly, all over, but especially the back of his neck and his extremities (hands, feet, lips, tongue).   The chronic pain had skyrocketed after what I'll call a "toxicological event" at age 13 from a horrific reaction to a doctor prescribed "over the counter" (OTC) treatment  that is completely benign to most people.   

He cried inconsolably when the pain in his fingers got so bad that he couldn't play his beloved cello in the orchestra at school.  He had to quit playing piano, too, and he could barely hold a fork to eat.  There were mysterious pain "peaks", especially in the middle of the night, but other times, too.  He screamed and raced around the house as if pursued by killer bees.  His school sent him home repeatedly with horrific headaches.  At night the house shook wildly with the leg-pounding on the bed that was more like a 4-hour grand mal seizure than "restless leg".  His screaming was deafening. So little sleep....

We went to 8 medical specialists and not one of them could diagnose the source of the pain, let alone help relieve it. Tylenol guaranteed a full-blown migraine the next day so was useless, as were other pain-relievers.  He was completely intolerant of chemicals in the air and his food, so I changed his entire diet to organic, stopped using any cleaners or scented products and got the school to cooperate with a low-chemical environment.  He only drank water---nothing else. 

With all of these changes, he improved, but still had pain every day, with screaming, racing, jumping, sweating, heart racing---gasping from the exertion...and crying, begging me to "Make it go away!"

A mom from Beaverton, OR with two autistic teenagers was the angel we needed.  She was the one who first told me in 2000 about toxic fluoride in tap water and instructed me to switch to reverse osmosis filtered water.  There was a profound improvement in 3 days!  Our lives changed dramatically for the better.

No, he was not (is not) completely free of all pain---sadly, unexpected chemicals lurk everywhere.   But by providing Kyle with fluoride-free water, chronic pain was no longer the 24/7 "norm", so detecting the other chemical triggers was finally more achievable and allowed much greater success at avoidance.  Fluoride remains the worst, and most difficult, to avoid.  It took me many years to understand the many sources of fluoride (I will discuss these in part 2 of my letter tomorrow), and to fully realize the extent of Kyle's sensitivity to it.  

Thank God for FAN's information that has been there for me time and time again.  

It's my hope that other children (and teens, and adults), who suffer as Kyle did, perhaps won't suffer as long as he did. The problem is much greater for those with autism spectrum disorders.  Please help FAN inform mothers across the world of the very real harm that fluoride does to some of our most vulnerable people.

There is so much more to Kyle's "Fluoride Story", but you're busy and I'm out of time. FAN will be sending out part 2 tomorrow. Meanwhile,  Please help FAN put a stop to fluoridation with your generous donation.  I've already sent mine.

Audrey Adams

Washington Action for Safe Water