Saturday, January 22, 2011

A "Treatment" For Down Syndrome

Relatively new on my radar is a claimed "treatment" for Down Syndrome.  There's a non profit organization that promotes use of a combination of medicine and vitamins that..for lack of a better way of saying it....'reduces' the effect of DS on a child.  One of these medications is (gasp) prozac ( a very low dose of it)

There is some research that backs this up (on mice)  and the medical protocol is supposed to improve long term memory and learning. It's kind of expensive, but the testimonials are hard to ignore. Families from all over the country that have started their young children, and school age children, on this string of medications swear by this treatment. I'm not going into all the details here, but if you want to check out some of the more technical info on this you can see their website http://www.changingmindsfoundation.org/home.html

This really elicits a lot of conflicting feelings for me. There are no studies showing long term effects of this medication, doctors don't have a lot of feedback for me, since it's such a new idea. My pediatrician recommended that I go see a child psychiatrist who would have a better knowledge of prozac and K's specific behavioral issues that we've encountered.

This is such a long hard road to walk. For three months, we've been fighting with insurance companies who don't cover "mental retardation" for psychiatric appointments, fighting with psychiatrists who tell me they won't accept her as a patient because she's too young in one case, too old in another doctor's case, and doesn't have the right insurance for the third doctor we tried.

All I want to do is get more information from someone who understands the implications of this type of medicine more than I do, but it is proving to be very difficult.

And the hope and fear I feel is even more conflicting. Part of me is ashamed to even try to find a treatment for DS. It's like admitting there's something wrong with my daughter, when the community as a whole promotes the idea that there's nothing wrong with children who have down syndrome. Having DS doesn't define K, I do believe that. But it is, at least in part, defining our family. It defines our relationships with each other, relationships we have with teachers, relationships we have with other families in the community, doctors..etc.

The hope is that maybe, just maybe, it will help. Maybe it could help her function better in school, have healthier relationships, be able to be more productive in her adult life, function as part of our family a little easier without constantly testing the limits, endangering herself with various poisons, grandma's truck, lamps, or stoves....

The fear of course is that I'm trading short term gain for long term loss. Maybe it could improve life for the short run, but causes some unknown problem in the future. The trade off is impossible to determine because the studies are so limited, and my access to knowledgeable doctors is non existent.

Yes I know there is another option. I could wait until more studies are done, until somehow the DS organization gets the attention of the media/drug companies that would be willing to fund more experimental treatments. The likelihood of this happening while K is young enough to still benefit from this treatment is pretty negligible.

I pray the next generation has it figured out better than I do!  I'd love to hear your thoughts.

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