That Time a Year Again - Please Read - Please Consider!!!!!

http://www.toysrus.com/shop/index.jsp?categoryId=3261680

The new edition of Toys R Us's "Differently Abled Catalog" Is out. Wow, shockingly a child with Down Syndrome is featured on the cover. I can't even blog, as a mother, an occupational therapist, and an equal rights advocate I am outraged. WHY do so many parents think this is good???

The following is a formal post I made, it sums it up. I am seriously considering the impact of involving the media. This is discrimination in it's highest form and the very people responsible think they are making great humanitarian efforts and perpetuating yet another label on our kids as well as promoting a segregationist mentality among the very people - our children's typical peers - we are struggling to achieve equality and acceptance with.

Post:

I am sorry, but as a mother of a child with Down Syndrome and and Occupational Therapist, I find this catalog extremely offensive and inappropriate. I have looked through them since their inception looking for toys which have been adapted for children with special needs and are therefore worthy of a separate catalog. I have found none. The exact same toys that appear in the usual catalogs are there with beautiful children who have yet another label pinned on them and publicized - by a toy store - "differently abled." Are not all children in fact differently abled? Why not include the icons telling what skills each toy works on (the reason we give any toy to any child) in one big catalog and include models representative of all children? How can we stand for a toy store imposing another label on our children? How does that fit in with our mission here? What message does this catalog send to the families and parents of our children's peers who we are struggling to gain acceptance and equality with? Just because "differently abled" sounds nicer than the "R" word, the outcome is the same. Separate and not equal.

Altered Cerebella

Just an interesting thought on an article a friend shared on fb:
http://www.eurekalert.org/pub_releases/2011-08/uocd-rfa082411.php

It states that a researcher found that the brains of children with Down Syndrome have "altered cerebella." The cerebellum is primarily responsible for balance and coordination which are obviously two things with which our children have difficulty. The researcher goes on to state that he studied the eye movements of the children and discovered there is an incoordination in the eye movements as well. He ultimately concluded that there was a disturbance in the "optikinetic" link, but then somehow decided this was related to early Alzheimer markers and a drug trial for Alzheimer medication.

In all of the research the Institutes have done, they stress over again how all children with a brain injury have difficulty with their visual pathways, most notably near point convergence which develops at the midbrain level somewhere around 5 months when the baby begins to crawl and creep; hence our focus on creeping, crawling and cross patterning. If the visual pathway can not accurately assess distance, accomodation, convergent focus etc., how might that faulty information affect the development of the cerebellum? Structure from function?

Anecdotally, the main area of major response to our consistent patterning over the past two months has been coordination and balance. Again, I think these research findings are important, and I am certainly glad they are being done, but how in the world would a drug to slow the advance of alzheimer's affect positive changes in the brains of our children?

Nutritionally Based Thyroid Approach - MUST READ and Forward

Many have asked about forwarding the information I come across, this is by far the best article I have found to forward to practitioners. It outright asks the question why we would supplement thyroid function with a synthetic hormone (synthroid) for life which can pose risks, rather than treat the thyroid through nutritional supplementation that is preventative, effective and poses no long term risk.

Fantastic article!
http://www.healthresearch.com/downsyndromethyroid.htm

Information Regurgitation

As I am diving into metabolic physiology, I thought it may be helpful to pass along information as I learn it.  Turns out, there is a lot of information, but I came across some very interesting correlations.

The Relationship between Thyroid and Mitochondria
This relationship is very interesting and concerning. It seems that The thyroid function is dependent on the efficiency of the mitochondria and the efficiency of the mitochondria is dependent of the health of the thyroid!

Basically:
-Mitochondrial Function (Phosphorylation) is dependent on two processes
1. The citric acid cycle (anaerobic - no oxygen needed)
2. Electron Transport chain (aerobic - oxygen dependent)

-The efficiency of these two cycles is regulation by RESPIRATION

-Respiration is determined by the Basal Metabolic Rate

-The Basal Metabolic Rate is regulated by the THYROID.

If you wish to read the full text:
http://www.ceri.com/mito2.htm

I can't help thinking about all the things I have been questioning about our kids. First of all, our kids tend to have a shallow breathing pattern combined with the phenotypical low tolerance to activity. Even the open mouth breathing, aside from congestion issues, can be a mechanism to increase oxygen intake. In addition, when we began studying Lucas's blood, his levels would dramatically drop as soon as we introduced a physically demanding activity. I mentioned in a previous post that I thought it was interesting that as soon as his Bun/creatine ration went up (a measure of how our kids' muscles eliminate waste), the thyroid level was off. When we provided nutrients in converted forms to take the stress off the mitochondria, the thyroid level returned to normal.

The above article makes the statement that it is a distinct possibility a positive feedback loop exists that healthy function of the thyroid is dependent on efficiency of the mitochondria.

Further- The following abstract
http://www.ncbi.nlm.nih.gov/pubmed/16366737

suggests poor mitochondrial function is responsible for neurodegeneration. (How long have we heard our kids' brains degenerate and fail to form dendritic and synaptic connections?) Further, it is thought that by introducing certain nutrients and antioxidants, neuroREgeneration is possible.

Strikingly, the list of vitamins, nutrients and antioxidants are similar in both theories:
B Group vitamins
Vit. E
Vit. K
ALA
CoQ10 (instead of the common ubiquinone we had to give the converted ubiquinol to make it easier for Lucas's mitochondria to use)
Acetyl-L-Carnitine
Iodine and Selenium

Many of these are in the commercial vitamin therapies for T21 (Nutrivene and Nutrichem).

When Lucas was 6 weeks old, my husband and I traveled to Baltimore to meet with a doctor who researched some of these issues. His opinion was that parents who wait and see will find the predictable problems, introducing this approach then will not yield the results it would have if the child's neurological and metabolic systems were allowed to develop with the supports. That was good advice - I have no way of knowing if it was the metabolic supports or if Lucas would have developed this way without them.

What I do know is that no one in my house can beat him in State and Capital memory! He soundly beat me 11 matches to 2. (Nevermind I am in love with the way he says Lanalulu!)

Naturopathy / Orthomolecular Medicine

If you have followed my blog in the past you know that our path was really defined by a brilliant doctor we were fortunate enough to find, Dr. Mary. She was a developmental pediatrician who almost lost her life to an illness many years ago and healed herself naturally. Because of this, she redefined the way she approached her patients - metabolic balance, natural supplementation and diet instead of chronic illness, herbal and antioxidant supplementation for neurological health and optimal development are a few of the things Dr. Mary taught us. Ironically, insurance wont reimburse a dime for her "alternative treatment" but has no problem paying for maintenance antibiotic therapy, hospitalizations, and conventional treatments that lead to conventional results, but that is another topic for another day.

Today I am devastated because our physician has become very ill with the very problem that almost took her life, so ill in fact that she is considering closing her practice. First and foremost I am deeply concerned for a woman who has spent her life finding ways - real ways - to help our children be well, and pray she finds healing herself. There are many we've met in our journey but none with the true compassion and dedication of Dr. Mary.

I need to find a way to learn and continue our journey until Dr. Mary becomes well. I've learned so much in the past few years, but can't bank my son's future on what I might not know. Finding a naturopath is easy enough, but finding one who is deeply aware of the metabolic differences and consequences of gene mutations of children with T21 is another story. There are many physicians who practice orthomolecular medicine and do work with our kids, but they are usually located elsewhere, have a waiting list, and certainly do not offer the amazing relationship I have with Dr. Mary. I would come across a piece of research, forward it to her, and before I knew it she was calling me or e-mailing me with ideas of how it fit within Lucas's plan. I know, I am asking for a lot.

I need some information fast. First, from my brilliant friends who are finding their way on this path naturally, what types of professionals, if any, are helping you? Does anyone have any experience with an orthomolecular physician? If you are doing blood studies are you asking for scripts or are your practitioners guiding the process?

I am going to begin learning all the things I can based on what I know about Lucas but I can't possibly know every gene mutation and it's metabolic consequence. For the first time since Lucas's birth I am a little fearful, and need information.

Any ideas, suggestions, or experiences would help

Winding Down...or Up?

We spent the day at the County Fair yesterday, it marked the last loved tradition of the summer -my mom always said when the fair rolled into town summer was on it's way out. As I watched my kids spin, drop and roll themselves into oblivion and have a treat or two that is forbidden the other 364 days of the year, a wave washed over me, was it nostalgia? Saddness? Usually this would be the case, but not this year.

This year, I felt excited.

I am excited not only for Noah and Ryan to head back to school and pick up where they left off - they had a wonderful year in school, for Fall sports and predictable schedules, but I am as equally eager to see what Lucas has up his sleeve.

Over the summer I have seen massive changes in him, the patterning - despite what critics (my former self being one of them) may say of the practice - has dramatically changed the way Lucas moves. In two months he went from an immature running pattern to beautiful crosspattern with a little "hop" in his step, his balance went from fair to good, his creeping and crawling are faster, more efficient and more symmetrical...and those are just the observable traits.  It is the less measurable qualities that have equally impressed me like successful risk taking, initiating physical play (that's a nice way of saying tackling his brothers to the ground and wrestling!), making his desires clear, both verbally and nonverbally, and successful introduction of responsibility tasks around the house. Ultimately, yesterday when we did not pattern, Lucas asked many times "Do Monkey?" (his name for patterning).

So, as I am preparing for Lucas's 4th birthday - calling Dr. Mary to get a script for our quarterly blood study, buying some new bits of intelligence (can't wait to introduce dinosaurs, authors and inventors), making new reading materials, and getting excited about the new addition to my house - Lucas's brachiation ladder his daddy is making for his birthday present and starting the brach. program- I am feeling as though I am standing on the brink of an exciting new chapter.

Better yet, I am more excited than ever to see the massive accomplishments my whole family will achieve on the next leg of our journey - together!

 (OK and maybe some haircuts!)

Stop Disability Slurs

I am excited to be a new official advocate for Stop Disability Slurs. If you haven't viewed the fb page, I have included the link. Together we can make a difference in the way the world treats our children. This is a great place to keep up to date on societal and media issues as well as a place to join our ideas for change.

I will be including updates on this blog as well as well.

https://www.facebook.com/stopdisabilityslurs