Letter from Patsy and Curt Nelson to FDA Deputy Commissioner, Mr. Lester M. Crawford re: seizure of taurine supplements

We are the parents of a four year old autistic child. A child who is now on track to loose his diagnosis of autism and go on to have a normal live. How did this happen?? Our family opened our ears to other families and their experiences two years ago when we got the devastating "life sentence" of autism.

We were told that there were no treatments, no cures, just hopelessness. Not what new parents (or any parents) want to hear about there child who had been developing beautifully. We looked to his doctor for explanations about the apparent delay in his development around 15 months. She twice missed the opportunity to help my child receive a proper diagnosis of autism. When his pre-school teachers finally helped us to get the proper diagnosis for my son at age 2 1/2, we were horrified to realize how little help and information families with autistic children receive today. We had no idea where to begin (a travel agent and stereo salesman) to search for the answers we would need to help our son. We were amazed to find so many families of children with autism waiting to help us and share there experiences. Without them, our son would most likely still be struggling to live in our world and not enjoying his life at all.

We have spent the last two years trying to put pieces of a huge (and troubling) puzzle together, racing against the "developmental" clock the whole time. In our initial search for information, we uncovered a very un-expected connection our son had to so many other children with autism. There immune systems are shot. What an odd thing for almost every one of the parents we met (and there have been many) to say about their children?? Why do our children all share similar problems with their immune systems? These realizations caused us to take a very close look at our own son's health and make some serious connections to his autism. We obtained a complete copy of his medical file from his doctor. We were sure it would point to no connection between his health and autism - we needed to move on and this sounded pretty far-fetched to us. He had suffered from asthma, acid reflux, allergies and eczema since he was an infant, but he was incredibly healthy at birth (9 lbs, 14oz.) and NOT AUTISTIC. The pattern was so clear in his file. Within two weeks of every vaccination series, he was back into the doctors office for immune system failures. We gave him more steroids, inhalers, nebulizers, antibiotics. The symptoms would be depressed by these medications, until his next round of vaccinations. At that point, he would have another occurrence of symptoms, not responding to medication. The cycle kept repeating itself until we lost him to autism.

We will spare you all of the details of our journey over the last two years. We did decide to try bio-medical interventions with our son, as well as treating his autism with behavioral therapy, occupational therapy and other proven methods of treatment for autism. We did not, nor do we now, consider any of the supplements or special diets a cure for autism. We have only tried to reverse damage that was done to our son's immune system. It has worked. You only need see him to realize that he is a happy, healthy four-year old boy, capable of enjoying life to the fullest. He no longer has asthma, allergies, acid reflux or eczema. He also doesn't take dangerous amounts of steroids to suppress those illnesses, as prescribed by his pediatrician.

Along the way, we had him tested to check his amino acid levels - there were much below normal levels. His doctor's prescribed Taurine. We were able to get those capsules from Kirkman Labs in Lake Oswego. They also make their capsules hypo-allergenic and are free of allergens that my son has to products like wheat, dairy, soy, etc. Over the years, we have come to trust them for their quality products and trust their commitment to the autistic community. Actually, their quality is so good and products so reasonably priced that everyone in our family uses their vitamins, etc. - not just our autistic son. Luckily, we have a supply of these capsules on hand and my son won't go without while we determine how to get more for him.

We understand and appreciate the FDA's important job of recalling potentially dangerous and misleading products from the market. But raiding a company that has been around and fully supports the children and families dealing with autism for 20 years?? We have never expected Kirkman's products to cure our son's autism. It is, however, very nice to see a healthy child (not needing a stack of prescription drugs running through the liver that has to last him a lifetime) riding his bike today. It is frightening that your priority is to take away some of the very supplements that have helped our child find his way back to this world.

ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.