Cure Down Syndrome? (Part 1)

This essay was written by a mother with a young child with Down syndrome. She did such a terrific job I asked her if I could post it on my blog.  Enjoy!

Cure Down Syndrome?

By Christy Sanchez

According to Webster's Online Dictionary, the definition of cure is to remedy; to remove; to heal. We have always been told that there is no “cure” for Down syndrome. That is – we’ve been told there is no remedy for Down syndrome. But is that really true? Is that really the case in 2010? According to the National Down Syndrome Society, in 1983, the average life expectancy of a person with Down syndrome was just 25 years old. Fast forward to now - the current life expectancy averages 56 years. What caused this change in life expectancy?
Did Down syndrome change in 27 years? Did the trisomy of chromosome 21 change between 1983 and 2010? Of course not - the genetics are exactly the same now as they
were then. A baby born in 2010 with Down syndrome has the same trisomy of chromosome 21 as the baby born in 1983. So what caused the increase in life expectancy? The answer is quite simple – advances in medicine. Not one parent or professional will argue this point. It is evident in the result – longer life expectancy.
Longer life expectancy is now achieved by addressing the physical problems associated with Down syndrome one by one. By identifying the issues that are more common in children with Down syndrome and screening patients – appropriate treatments are prescribed. These common problems have a remedy or cure. For example, an underactive thyroid has a remedy – medication. Celiac disease has a remedy – follow a gluten-free diet. Heart problems such as ASD and VSD have surgical remedies to treat them. People with Down syndrome still have the same triplicated chromosome 21, but there are now remedies for the physical problems associated with the overall syndrome. What do we know about what's different in their brains? Is there a remedy that can help now?
In the last 10 years an accurate mouse model (of Down syndrome), Ts65Dn, has been
developed. According to the NIH National Human Genome Research Institute, the Ts65Dn mouse mimics trisomy 21 (or Down syndrome) and exhibits many of the behavioral, learning, and physiological defects associated with the Down syndrome in humans, including mental deficits, small size, obesity, hydrocephalus and thymic defects. This model represents the latest and best improvement of Down syndrome models to facilitate research into the human condition. In the lab, researchers are now able to reveal answers or remedies for the neurological disorders associated with Down syndrome. Too often when we talk about a remedy or cure for problems in the brains of people with Down syndrome, parents and professionals alike say, “No, a cure is impossible. People with Down syndrome are the way they are – just accept it and move on!” Before you jump to that same conclusion, I encourage you to take a look at current science. Read it yourself. That is exactly what Teresa Cody did. Teresa is the mother of Neal, who has Down syndrome. At the age of 8, Neal couldn't read, write or distinguish shapes. “The main problem was he really couldn't remember. He did not ask questions. He could not verbalize,” said Teresa. “He used to pick up the pen and stare at the paper and you could see he had no idea which way to make the pen go to copy something.” Teresa studied the research. Based on Dr. Craig Garner's work at Stanford, she devised a protocol that contained compounds shown in Garner's research to target the underlying cause of learning and memory problems. Just one year later, Neal was reading at a second grade level and doing multiplication by hand. Neal's academic gains while taking the treatment protocol inspired Teresa to create the Changing Minds Foundation, a 501(c)3 non-profit organization, dedicated to improving the mental ability of persons with Down syndrome – now – with available medical treatments and proper education. A documentary film called 'Changing A Mind' tracked the progress of Neal and several other pilot protocol participants over the course of two years. You can view a trailer of the documentary on their website http://www.changingmindsfoundation.org/

Does Down Syndrome have Obsessive Compulsive Disorder?

As Neal's memory and learning ability have increased, my husband and I have noticed what I would call 'Obsessive Compulsive Disorder'.

Imagine that your mind got stuck
on a certain thought or action...
Then this thought or action got replayed
over and
over again
no matter what you did…
You don’t want these thoughts – it feels like an avalanche…
You don't want to line up your toys.....
Along with the thoughts come intense feelings of anxiety
and with the anxiety the thought or action is replayed over and over trying to reduce the anxiety!!

The above excerpt is from the Obsessive Compulsive Foundation:  http://www.ocfoundation.org/
There was an essay written and delivered at an NDSS conference in 2005 which proves my point exactly. Dr. Dennis McGuire describes Down syndrome behavior in 'If the World was Ruled by Down syndrome'-
In the world of Down Syndrome, there would be a great deal more tolerance for:
■Repeating the same phrase or question
■Use of the terms “fun” and “cleaning” in the same sentence
■Closing doors or cabinets that are left ajar (even in someone else’s house)
■Arranging things until they are “Just so.”
All that he describes are OCD behaviors. Is this positive? I truly think he is trying to be positive toward Down syndrome, but I'm insulted. He has just described a disorder that everyone else gets treatment for and for DS it is 'cute'. Redirecting and behavior therapy have been helpful, but wouldn't it be wonderful to turn the OCD behavior off and with it the accompanying anxiety?
To read the entire essay by Dr. McGuire go to http://www.nads.org/pages_new/news/ruletheworld.html

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.