Saturday, December 8, 2007

Running After a Cure

I am supposed to give a review soon to an audience about "advances in Down syndrome", and I am scared to tell about one study. It shows an improvement in MICE that MAY someday lead to a medication to aid in Down syndrome. What am I afraid off? Parents who will run off and use the drug before it is tested.
Sometimes I am amazed by the way people can run after the elusive "Miracle Cure" for their "special needs" children, or for their diet. People will spend huge sums of money for untried and certainly unproven "cures".
First, there is the issue that if something hasn't been tested yet, how can you be certain that there are no side effects for your child, perhaps even very serious ones. I remember falling for a diet "cure" years ago, an "all-natural" one. Since I was breastfeeding, I hesitantly inquired about the existence of medications/caffeine in the product, and was assured that there were none. Within a few days I realized that one quickly acquired a "tolerance" for the product, needing to up the dosage. I got scared and dropped the idea. Years later I learned that the product was pure caffeine (and a very expensive caffeine, at well!!). Years ago people tried using growth hormone on children with Down syndrome. The result was a higher incidence in cancer in these children.
Secondly, I personally think that if I, junior local scientist, discovered the cure-all for Down syndrome, autism, or overweight, I would RUN to the drug companies, set up double-blind testing, and rake in the resulting fortune. The fact that a product is an "exclusively patented, specially processed" secret is significant evidence that it would never hold up under close scrutiny. The same goes for "treatments". About a year ago I heard of two parents from our community who fell for a quack "Doctor", who supposedly cured "floppy muscles", but one had to commit themselves to a ten-session treatment program at sky-high prices. Again, if his treatment worked, he could prove it, and then rake in the money much more easily, simply by training others.
When confronted with my arguments, parents say:"Why not give it a try?" My first answer is the "side effects" problem (see above). The second point is that one could use that money to do things which will make the quality of your life that much better:
Try taking a cab back from that late afternoon therapy, or hire a teen "mother's helper" for a few hours a week. Or send the siblings to a nice camp in the summer. But please think twice, evaluate things carefully, before falling for a new "amazing" way to empty your pocketbook.

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