So Much to Learn

There is so much information to put together, I am going to try and get up to speed on all of it!

Blood...blood....blood
Last brief post I mentioned Lucas's bloodwork revealing high iron levels. Lucas subsequently had the chromosome test for hemachromadosis and it was negative - thankfully, but the question remains how to manage it moving forward. At this point we are going to recheck every six months to make sure the iron in his system is not roaming free to do damage to his body while we tinker with supp's and diet. I can't help but think about the fact that I never once read or heard about people with T21 having an issues with an iron level despite the fact they are at greater risk for leukemia (uses iron as an energy source), have cognitive problems and earlier onset of dementias linked to oxidative stress (oxidative stress is influenced by iron), gastrointestinal problems, kidney problems, etc. Then there is the issue of low iron levels which can result in lethargy, poor tolerance to activity, weakness, etc. If we took our children to a doctor because of problems learning, or poor tolerance to activity, what would we likely be told? Again, how much of the "syndrome" is metabolically based? And even if metabolic disturbances are not totally responsible for features of the syndrome, it stands to reason that managing blood levels would greatly improve the overall health of our children.


I keep reminding myself the reason we embarked on this journey was to discover the reasons for commonly seen problems so we can intervene beforehand. Hence the idea to check not only IgE levels in the blood (actual allergy to food) but also the IgG levels which indicate sensitivities. Sensitivities can manifest themselves in any number of ways that we may not even notice or may just assume is part of the "syndrome." We checked Lucas for dairy / casein, (his level was 155, should be less than 2!!!) ditto for soy, egg yolks, egg whites, and gluten. All of his IgE's however were unremarkable. On the surface I thought this wasn't too bad, after all, eating these things have not created actually allergic reactions, so why be so restrictive with his diet? Then, as with everything else on this road, I realized it is all about subtle differences. A sensitivity to dairy combined with the increased iron level, decreased effectiveness of his mitochondria, etc. all begin to snowball. These are as good reasons as any as to why features of the syndrome develop over time.


The ironic part is that I am not feeling overwhelmed by this at all. If I had a list of 15 medications to give my son daily to keep him healthy, I would lose my mind, but natural supplements and diet to maximize his health is empowering. In fact, Lucas's journey has made us all better people, I look at my other children and realize that I need to know what is going on in their bodies too. Just as "Down Syndrome" should not be accepted for what it is, neither should "Typical and Healthy." I can say that last year at this time we were already on our 4th upper respiratory infection, and this year we've had barely a sniffle.


The doctor who is working with us on this path is nothing short of genius, she leaves me running to biochem and physiology resources after every conversation...a welcomed change from the visits I used to have where I was the one with information looking for direction and being thwarted. 


There are many more issues concerning blood work analysis - a thorough study yields clues and options to maximize health and wellness. I can not stress enough how important it is...find a doctor who wants to find out the reasons why....not just write a script for what you ask for.


Creating circuits
A few blogs back I spoke of treadmill training for infants. After that blog (I think it was early October) I started thinking about the theory behind it. Feeding the reciprocal movement into baby not only helps his brain organize the movement, but you are intersecting the sensory system with the motor cortex in the brain. The interesting part of the evidence lies in the other surprising outcomes, improved fm control, increased vocalizations, and improved sitting balance to name a few - suggesting that the input is creating change in other seemingly unrelated areas of the brain. 


Looking at my just-turned three year old, I began a little experiment. My older son had a "Smart Cycle" when he was small. It is basically a toy stationary bike that hooks up to the TV. The most basic game it plays is letters, numbers and sight words - these things were right up Lucas's alley! So I rigged the pedals so I could fasten Lucas's feet into them and I sat on the floor next to him for 20 minutes everyday moving his feet around and around while he watched this game. Within the first session I noticed an amazing change in his speech, he was literally yelling the name of the letters and numbers as they went by him. I did not teach him how to steer or play the game, I wanted him to be totally absorbed while I "pedaled" his feet. 


After about two weeks, Lucas had figured out how to play the game and was yelling out the sight words, saying "Mom, look..." to everything he was doing, and when he got off the bike, he would spend about 10 minutes in this strange little "march" around the house. After 1 month I hooked his feet up, he turned everything on and I did nothing. The game began but his car on the screen didn't move. Guess what he did? Yep, about 5 full reciprocal rotations, smooth and coordinated. I continued the input 20 minutes a day for the next few weeks and now, I am not even allowed to strap his feet in anymore. Lucas rides the bike and plays the game (many different games now) for 40 minutes all by himself.


We are embarking on a Letter formation / tracing program designed exactly the same way and for the same reasons..not so much to simply learn the task of forming a letter, but to forge new maps in the brain, the new pathways created and all that is being stimulated in the process.. Hand over hand tracing capital and small letters (hopefully combining a silly song - if I can come up with one) the whole alphabet through 2x/day. Will let you know how it goes!


That's all for now, I have more information about Chiropractic care, the Speak supplements, the role lactic acid plays in our children's activity levels, and more....blog soon!


Warmest Regards,
Geralyn