Friday, August 01, 2008

One More Thing..

What a lot of people outside of *our community* don't get is that none of the reasons I put my feet on the *biomed* track (and started walking and never looked back) has or had anything to do with wanting to *fix* Salamander's autism, with *not liking the child I had", with *wanting that perfect child*, with *not being able to appropriately discipline my child*.

My child was ill, deadly ill, and on his way to a G-tube (the fact that he has/had neurodevelopmental delays, a lot of behavioral issues, learning disabilities and all that certainly complicated things tremendously. But my primary concern has always been about his health, or the lack thereof). He was wasting away.. literally...

And all mainstream medicine had to offer was "Give him more fat. Put whipped cream on his food. Give him ice cream. Lots of melted cheese sandwiches. Add mayonnaise. Lots of butter. He needs lots and lots of calories" (great advise for a child that had leaky gut, has fatty acid digestion issues, has pancreatic insufficiency; and for whom gluten and dairy turned out to be absolute poison). And "Use reward plans. Tell him he can get a Tonka Truck (an absolute obsession in those days) if he eats his meal without vomiting." (Like he had ANY control over the vomiting).

And I can go on like that with more gems of *professional medical advise* ....

I stumbled across dietary interventions by accident, shortly after Salamander's official *neurodevelopmental disorder(s)* diagnoses (as we collected several *first time out of the gate*). I was at my wits end.. as while having a diagnosis DID help in getting him the proper support in school and helped in him no longer being seen as *that obnoxious kid that is always acting out*, and while it helped me understand that I wasn't a total failure as a parent, it did NOT do one iota in addressing the health issues. NOTHING.

I don't even remember exactly how it all played out. But somebody had mentioned the Feingold Diet to me, as a potential way to help address hyperactivity issues (and boy, did WE have hyper activity issues). So I turned to the internet (like so many *bad* mommies) and stumbled across the work by Dr. Doris Rapp ("Is This Your Child?"). I was intrigued enough that I bought several of her books. And OMG, more than half of her case descriptions described my Salamander to a T (red nose, red cheeks, red ears, spaced out look, uncontrollable rages, constant nasal congestion, just to name a few symptoms). And in one of her books, she mentioned something about casein free and gluten free diets (ironically, Salamander had a FULL work up for Celiac's at 18 months - work-up per the specialist was negative. Funny thing is that when testing was repeated when he was 6 years and 3 months old, one of issues that rolled out was Celiac's Disease). And from there, I landed on Karyn Seroussi's book. And the rest is history, as they say.

Of course, when I mentioned that I wanted to 1) eliminate all artificials from Salamander's diet first and go completely organic, and then 2) go casein free, and then 3) go gluten free, Salamander's docs were mortified. How could I take foods away from a child that wasn't eating to begin with? What I really needed was a visit to a good psychologist and a prescription for Prozac or the like, and *all would be well*. *I just needed to accept that Salamander was different, and I needed to let go of all these crazy ideas*.

TG I didn't listen. And believe me, I was terrified. What if I made things worse? What if Salamander completely stopped eating? What if he became MORE ill?

But really, WHAT did I have to loose at that point? Salamander was already in HELL. That was crystal clear. And if dietary changes even had the slightest chance of making his HELL more livable, then how could I NOT give this a try?

Removing all artificial crap took care of the terrible congestion within 4 days. He no longer needed massive doses of Claritin. It also made him much more willing to try foods that weren't on *the list* (and our list was very, very short). The red nose went away, the red cheeks became less pronounced. The constant *hyper bounciness, ants under the skin and in the pants* type stuff became less intense. He was able to fall asleep easier (getting him to go to sleep used to be a 2 hour long three-ring circus) - staying asleep was still a big issue.

Removal of casein resulted in Salamander finally being able to completely potty train during the day (remember he was over 6 years at this point. Yes, I had a 1st grader who was NOT completely potty trained). The hours long hysterical crying jags went away too (his 1st grade teacher gave him an ice cream sandwich about 3 weeks after we had gone casein free; she knew about the dietary restrictions but didn't want to make Salamander feel excluded - oh boy, the results were SPECTACULAR. And teacher became an instant convert).

Removal of gluten took care of the constant vomiting and diarrhea. And he slept!! OMG, how this child slept...

And then every subsequent dietary change I made has had a positive effect (the withdrawal periods were BRUTAL though... TG for all the internet groups out there who kept telling me that the fact that his withdrawal was so, so brutal was actually a GOOD sign.. Anybody seen what happens to a junkie in 'drug rehab/detox". I have. The parallels are striking).

And from dietary changes, I discovered the DAN! protocol. And from there, I discovered a host of other interventions that helped, little bits at a time, in getting Salamander healthier. And finally I landed on Dr. Amy Yasko's protocol (which has been by FAR, combined with the ongoing dietary interventions, the BEST protocol for both my boys).

And lo and behold, along the way, all this *stuff* that's considered part of *ASD* either went away or became a lot more manageable. Weird huh?

The fact that his ASD and other neurodevelopmental disorder symptoms have become much less pronounced has been a nice ICING ON THE CAKE phenomenon. But most importantly, he is SO MUCH HEALTHIER and he is happier. Yes, I know we're not there yet. Not saying that anything I am doing is curing anything. But it has improved his quality of life tremendously.

Is it easy to do all of this. No. It's GD hard. And it's GD expensive. But Salamander has a chance now. And Potatey has been saved from a lot of trouble.

And that's what matters.


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