Tuesday, January 19, 2016

A Shot in the Dark



Over the past year, I have not spent much time blogging.  As I noted in the last post, I am going to attempt to do a better job of this starting now....not just for arbitrary reasons, but also because we are on the cusp of some new treatments, and I would like to keep a current record of the trials, tribulations, and hopefully also the progress that results.

To recap, because of the Nickle Pickle 5&10K fundraising race that we started a couple of years ago, we were finally able to pursue a path of treatment that I have long since been interested. (Thank you to all who have been a part of this for the past couple of years....I owe a completely separate post to this topic!!)

 As most people  (in the autism community, anyway) know, Applied Behavior Analysis (ABA) Therapy is the only "evidence based" treatment that is successful for autism.  This means, basically, that this is the only scientifically "tested" treatment (using discrete trials and other fancy scientific methodology) that has gleaned positive results with a large enough population, and with repeated similar positive results that it can be deemed "evidence based" and successful for treating autism.  Scientists across the country would probably cringe at my not exactly scientific description there of what this means, but that's basically the layman's way of understanding it. As a result, legislation in most states (and most recently in Michigan about 3 years ago) passed laws requiring that insurance companies cover this specific treatment for kids up to age 7 who have an autism diagnosis.

At that time, we were new to the autism diagnosis.... and VERY new to this world of Autism.  We immediately signed up, and got started at one of the most reputable places in the country (luckily for us, it is only a few miles down the road.)  This brought us some sense of hope that we were going to "fix" our son, and "ABA therapy" him into normalcy (so was our thinking at the time.)  There are all kinds of stories, documentaries, books, etc out there on kids who have a diagnosis, and then engage in an intensive ABA therapy program, and seemingly "magically" are normalized into what appears to be the skin of a typically developing child.  At least, at the time, this is what I kept seeing and reading about it.  What I later realized, is that when you are dealing with a disorder that has no proven origin, subjective diagnostic methods (in my opinion anyway, though technically, it is done using medically relevant psychological testing) , and no magic medication to cure said disorder, that just about EVERY method of treatment in existence is also sprinkled with success stories such as this....evidence based or not.

This makes life very confusing and challenging for a parent who wants to help their child maximize their potential.  There is only ONE evidence based treatment (ABA) but it doesn't work for everyone, and when it does, the results are extraordinarily varying from person to person due to the extreme spectrum of the disorder.  That said, it seemed a logical place to start, and while we made some useful and exciting discoveries about out son's abilities and cognitive understanding in the process of participating in ABA, it did not carry over for him into other environments.   Perhaps it would have had we continued, but after driving ourselves into severe debt due to insurance companies not covering the therapy as promised, and adding another child into the family in that same window of time, we were forced to stop.  Life sometimes presents some cruddy choices to make, and this was just one of them we had to make for the good of our entire family.

As time progressed, and my knowledge of possible ways to help my son grew, I became increasingly interested in what is known as the "bio-medical" approach.  To me, a mere parent, while ABA might be the only evidence based treatment that has proven positive results, (say the traditional medical professionals,) it is not treating the root causes of Autism, which I came to eventually believe are very much related to the gut and the biological systems within the body that regulate and/or hinder some of the processes of the brain.  I'll admit, there was once a time when more "seasoned" Autism parents would talk about the "gut, " the biomedical approach, diet change, etc and their importance in this whole autism mystery, and I would mentally roll my eyes and think..."not again!"  But over time, and after more and more reading (discriminative and selective  reading, I would like to think)  I simply could not deny that there had to be SOME link between the nutritional deficiencies and biological factors that play into some of the behaviors/symptom associated with Autism.  Anecdotal or not, there is simply too much information out there, to completely deny this possibility, and this potential to help my child.  Evidence based? Perhaps not now.  But that doesn't mean that one day it won't be.  And wouldn't you do whatever you could to help your child? Especially if it can't hurt them???  And so,  this is how our journey on the bio-medical train began last year.

Now, as this is not an evidence based path of treatment, there are very few doctors who specialize in this, and fewer who accept any type of insurance coverage (for some of the medically based portions of the treatment, such as blood work, lab testing, and some medications.) It is extremely expensive, with no FDA approvals, and no guarantees of any kind.  Therine lies the hesitation for many (myself included) parents to begin on this path.  It's a big gamble, and if you don't have the funds to play with, and the guarantee of success, it can be hard to consider without being extremely skeptical.

 In our case, the caregiver we see is an actual Medical Doctor who, over time, saw the significance of this type of treatment, not only for autism, but for all KINDS of common disorders....Celiacs, Alzheimer's, GI issues in general, allergies, etc.    to be relevant enough that he left traditional medicine altogether to pursue this field exclusively.  The basic premise is to employ nutritional based regimens (supplements, and dietary changes mostly) to treat the causes of the discomforts or deficiencies that affect the biochemistry of the body and cause various arrayes of life-complicating issues.

At first,  learning about all of it seemed a bit like hocus-pocus and hype.  But, even for the skeptic (aka ME) when you have a medical doctor explaining to you (and also your own pretty solid physiology background from college) the reasons why and how these deficiencies can affect a developing brain  make it pretty hard not to at least acknowledge that it makes a LOT of sense.  If you want to learn more about it, this is their philosophy and the basic foundation of the approach.

Anyway, all of this to say that last year, we began a regimen of daily supplements as well as a dairy and gluten free diet. (Well, when I say we, I mean Nicholas...but it certainly takes a village to keep it up!)  I did see some positives, but we had some issue with reconnecting with the doctor (who has since left the practice) and we ended up falling off of the wagon after several months.  However, we are back on board, with a nationally renowned bio-medical doctor, and have begun basically the same regimen, PLUS a major addition to our arsenal: Methyl B-12 Shots.   This deserves a post of its own also, and it goes without saying that giving my son a shot every 3 days took some serious consideration, and is something we do not take lightly.  However, this treatment for autism, to date, is one of the most potentially powerful (anecdotally anyway) supplements for him, and we decided that we simply have to try and see if it helps him.  Herein lies the quandary that so many autism parents find themselves in....if at first you don't succeed, try, try more things......

SO, this is where we are.  After just a few shots administered thus far, I'm not sure if he's even getting the medication because we are still learning how to work our way around this needle thing ourselves. The first time we did it, I think I got more of it on Chris' shirt that in Nicholas' rear, and the last time, I'm pretty sure we just sprayed it all over his bum.  It's a challenge for all of us, though Nicholas doesn't seem to really mind other than not really being thrilled to be restrained if for even 5 seconds. All that we can hope is that the benefits outweigh the negatives. Only time will tell.  Regardless, I figured I'd share our experiences here for those who have considered this route, or have done it and had success or not.  And if you are one of those people, I'd love to hear YOUR experiences!

So wish us luck, and I will keep you posted on the changes we see, hoped to see and didn't, or didn't know we'd see that surprised us!

Until next time.....

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