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I have learned to be careful of what people speak over myself and my family. There are things that come up, and people will assign a particular outcome based on their own experience or the recorded "statistics" of others. However, that is not necessarily indicative of what may happen in my family. Someone else's experience does not mean that will be your future.
While we continue exploring some deep aspects of Down Syndrome, I want to take some time to explore what others speak over our children. More importantly, let's discuss what we accept, and what we can do to provide a different outcome for our kids in the modern world where we have so much more knowledge available.
Down Syndrome Throughout History
If you've read my other articles for Down Syndrome Awareness Month, you'll probably remember some of the statistics I've shared. It's unfortunate that society as a whole has rejected people with differing abilities throughout history. Some may say that this is just Darwinism in practice. If we were like any other animal, I would agree with that. However, we are the only species who has the use of logic and the ability to continually take action that is not directed strictly by instinct.
People with Down Syndrome are fairly easy to pick out from the crowd because of their similar physical attributes. This has, unfortunately, made them a target throughout history. When various countries want to "purify the race" or get rid of the "burden on society," they often first look to those who are obviously different.
We see some of the same things today when we hear what perinatologist tell women expecting a child with Down Syndrome. They do everything they can to end the pregnancy before the child is born. We see how successful this campaign has been in countries like Iceland, who have virtually no births with Down Syndrome. Why? Because if it's discovered prenatally, most people terminate that pregnancy.
What Your Doctors May Tell You
When you carry your child to term, there are countless things that you may be faced with that there is no known way to prevent. This includes cardiovascular and gastrointestinal abnormalities. However, once you get past those initial problems, you’ll start hearing all sorts of things from your doctors.
When our little guy was less than a year old, we had followed the recommendation for periodic blood work, and his TSH was a little high. The pediatrician at the time sent us to an endocrinologist for further evaluation. That specialist immediately pushed that we needed to put him on a synthetic thyroid hormone, one that would likely follow him for the rest of his life.
We have grown in wisdom a little over the years, and we understand there are things that make the thyroid work. For instance, if your body is deficient in iodine, then the thyroid fails to function. Also, if your pituitary glad isn’t sending the right signals, your thyroid won't produce enough of its hormone. This is why the standard thyroid panel includes the TSH test.
However, what you may not know is that if the hypothalamus isn't producing enough TRH, then the pituitary will also produce too much TSH. But that's never actually tested by the standard protocol. It's also assumed that, at least in the United States, people receive sufficient iodine. After all, we do have iodized table salt (which I wouldn't recommend...we prefer organic Himalayan Pinks Salt).
In our case, we make all of his food ourselves, and are intimately familiar with what he consumes and what may not be in his diet, so we challenged the doctor on this. That didn't go so well, so we parted ways with that provider. We also parted ways with the pediatrician, and when we found his new PCP, she couldn't believe they had even made the recommendation based on his levels.
I share this particular experience because we could have accepted that doctor's plan for our son, simply based on a "statistical probability", and allowed that to shape part of his life moving forward. Instead, we decided to seek other opinions, to learn more ourselves, and to continue trying to give our son everything we can to keep him from being medication-dependent the rest of his life.
What We Now Know About Genetic Expression
Fortunately, science has come a long way in understanding how the body works, especially how the genes interact with various functions around the body. We know that in Down Syndrome, the extra copy of the 21st chromosome causes an over expression of certain proteins and enzymes. This is what leads to so many problems.
Take that same thyroid issue and let's explore it. Some current research has demonstrated it's the overexpression of some genes mapped to the 21st chromosome that cause this common problem for people with Down Syndrome. Unfortunately, if you take the approach of just adding synthetic hormone to the body, you only solve one of the symptoms, but leave all the others without appropriate attention. This is why understanding the root problem is so important. Occasionally, there is no known solution for the root problem, but many times Western Medicine looks to merely treat the symptoms rather than getting down to the root problem.
The incredibly smart scientists and doctors that work with the Trisomy 21 Research group have uncovered the specific gene overexpression tied to these thyroid problems. Even more exciting is that they are working on finding the solution to correct this gene problem. Take a look at the incredible wealth of information available from this group, including some detailed information about all the known overexpressions caused by Down Syndrome and what they mean.
Armed with this information, you are better able to advocate for your child, and help them get what their body actually needs to function correctly. Most doctors aren't familiar with this research because there aren't many people who truly specialize in Down Syndrome. Even at 1 in every 700 people having the condition, it's not enough to make it profitable for most doctors to spend the time and effort to gain this knowledge and understand it. That means it's up to us, the parents and caretakers, to arm ourselves with the knowledge.
What do you think of the causes of many of the problems with people with Down Syndrome? Share your thoughts and stories in the comments below!
**These statements have not been evaluated by the Food and Drug Administration. This information is provided for educational and entertainment purposes only and is not intended to diagnose, treat, cure, or prevent any disease.