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Friday, August 6, 2010

Do We Need Clinical Trials for Every Medication?

You would be surprised how much resistance the CMF protocol gets, especially from the medical community but also parents. Texas Children's Hospital has a Down syndrome clinic. I met with the pediatrician in charge of the clinic and she told me she would have to have clinical trials. Really? All the medications in the protocol have been through clinical trials. OK, not specifically in Down syndrome but no medication has been through clinical trials specifically for Down syndrome. For example, have you ever given your child with Down syndrome an antibiotic? We know their immune system can be described at least as different, if not, immunodeficient. But faced with pneumonia or strep throat, the logical decision is to treat with a medication that the rest of the population uses.

Then, why do we refuse to treat other symptoms with medications that the rest of the population would be automatically prescribed? The symptoms that are in question happen to be psychological. All of a sudden, it is no longer considered possible to treat Down syndrome without specific clinical trials. We are not talking about dangerous drugs with severe, complicated side effects. We are talking about prozac which has been around for 30 years and given to over 60 million people. Can you believe that? 60 Million!!! That is incredible.

Prozac is recommended for anxiety, depression, obsessive compulsive disorder and eating disorders. Do any of these diagnoses fit? My observation says, yes! OCD is rampant. Anxiety is present. And there are many reports of depression in adolescence and the adult DS population.

How about the ADD/ADHD meds? How many in this population have good concentration and are not distractable? Children and adults all over America recieve treatment for attention problems.

What I see is that this smacks of discrimination. Yes, I said the big 'D' word. Down syndrome individuals are easily diagnosed by facial features and body type. Once that label is placed on the person with Down syndrome, the medical community feels there is no need to evaluate or treat any further. This is wrong!!

Scientific research has shown that these medications should help. What could it hurt to try? There are no dangerous side effects. Most patients report NO side effects. A physician who refuses to treat Down syndrome properly is discriminating because he/she can label the patient and move on. As parents and care takers we should demand better medical treatment and refuse to accept NO TREATMENT.

1 comment:

  1. While I appreciate your enthusiasm for wanting to help people with DS improve their quality of life (I am a mom to a 20 month old who happens to have DS), I would have to disagree with your statement that these medications in this protocol have "no dangerous side effects". Although many people may take Prozac without any serious probs, there is still the known potential for kids taking this type of drug to becaome suicidal, become more anxious or aggressive, to even have seizures. I also take exception to your statement that, "a physician who refuses to treat Down syndrome properly is discriminating".....In my opinion, Down syndrome is not a "disease" that necessarily requiring some form of treatment. Rather, I believe that people with Down syndrome have individual strtengths, weaknesses, & medical probs which need to be addressed on a individual basis. Whose to say that EVERY kid with DS has OCD or an attention deficit problem. My 20 month old son not only has an excellent attention span, but is already reading several words, knows his shapes, colors, & body parts, & several signs among other things. And guess what? Other than his cardiac & reflux medications the only "drug" I have him on is an over the counter multivitamin. To me, making the assumption that EVERY person with DS needs to be on Prozac or ADHD is more discriminatory than a physician refusing to treat someone with said medications. This reasearch you speak of is after all, based upon tests done on mice. Talk to me when extensive reasearch has been done on human beings for years & years......