Sunday, August 14, 2005

VOODOO WORKS! (PART II)

My last post discussed how controversial it can be to even discuss the biomedical approach to treating autism spectrum disorders, even with friends. The approach includes a gluten-free/cassein-free ("GFCF") diet, supplements (vitamins, enzymes, probiotics, minerals, and aminos), and chelation. Some people liken biomedical to voodoo, a name I can live with. Calling it by a funny name does not diminish the positive results my wife and I have seen in our son. So, voodoo works, at least for us. I think it would work for a lot more people if utilized appropriately.

That is not to say that I think anyone who doesn’t use a biomedical approach to treatment of ASD is shortchanging his or her child. I respect any well-considered choice a parent makes. We all want to do what is best for our children, and I understand the concerns of parents who opt for other approaches. Indeed, we must all be comfortable in what we do, and we must all avoid being half-hearted in whatever treatment approach we use.

Ginger Taylor’s recent blog, "Duffy’s Dilemma," covered the decision-making process better than I could hope to do, but I would like to share some of what my wife and I have learned about getting the most out of this approach. If you’ve already decided that biomedical is not for you, you can skip the rest of this post.

There is one common thread to any advice that can be given. First, last, and constantly in between, exhaustively research the issue for yourself. Learn about the various modalities before you consider going down the biomedical path, and keep researching it after you start. Find a good discussion group on the web with other parents using biomedical treatments.

No matter how much you educate yourself, do not try a biomedical approach without appropriate medical direction and supervision. This is a medical procedure; treat it as such. Many dedicated doctors have affiliated themselves with the DAN! (Defeat Autism Now!) program developed by the Autism Research Institute. Those physicians know the protocols and are best equipped to guide you in your child’s treatment.

Keep in mind that the various elements of biomedical treatment are intended to work as parts of a whole. Don’t start adding supplements until you have tried the GFCF diet – and you are sticking to the diet. Don’t start chelation to get rid of metals until you have started the supplements.

Just like standard pharmaceuticals, supplements interact with each other and with foods. Make sure you are administering probiotics and aminos at the right time, and that your supplements are being given in the right combinations. Ask your DAN! Doctor for specific guidance on this, and also listen to other parents’ experiences.

Constantly reevaluate your child’s progress and the process. Keep in mind this is an emerging science and that every child is different. Even within DAN!, there are differences of opinion regarding the protocols. If your research and your observations tell you there may be a better way, do not be afraid to discuss it with your doctor. We are now on our second DAN! Doctor even though the first one is a fine physician. Based on what we knew, however, we thought it best to take our son’s treatment in a different direction. Once again, these are the types of decisions that can only be made if you do your homework

We constantly fine tune our son’s protocol based on his progress and what we have learned from our doctor, our research, and other parents. Changes are a joint decision we make with our doctor.

Be patient. The process can take a couple of years. In my house we aren’t too worried about the time, because we’ve already come a long way in a short time. With every step we’ve seen improvement. We started the GFCF diet during a school break. After my son returned to school, his teacher asked what we had done to provoke such an amazing improvement in just a week’s time. In the months we have been following a biomedical protocol, my son’s speech and language rapidly progressed from pointing and using single words to speaking in complete sentences. His attention and eye contact are vastly improved. Most interesting of all, my son’s impaired thyroid function, which we believe is related to the same factors that led to his ASD, has improved to the point he no longer needs medication. (His endocrinologist is pleased but a little mystified.) We still have a long way to go, but our little boy has already exceeded any hope we were given by the mainstream doctors who first diagnosed him.

Keep in mind that the underlying hypothesis upon which this treatment is based is that ASD has biochemical causes, and that your child’s immune system is compromised. The more you clean up your child’s environment, the better he/she will respond. We rely as much as possible on organic foods, without preservatives or pesticides. We have worked to remove other potential dangers from our son’s environment by focusing on toxins found in his laboratory tests.

Finally, don’t abandon more traditional therapies that may be appropriate. Although we made a choice to avoid drugs like Ritalin, our son still receives speech and behavioral therapies.

Like anything else involved in raising an autistic child, implementing biomedical treatments is "inconvenient," and it can be costly. For my wife and me, however, the decision was a no-brainer. Our son is worth it.

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