Saturday, April 17, 2010

Me and Biomed: it's complex

How I wish I was one of those people who was able to leap into things with both feet and just go with it. It's just as well I'm not a professional athlete, because apart from truly sucking at sport, I'd make a truly hopeless client for Nike sponsorship.

Not that they seem picky at the moment...

I want to improve Billy's health. That is the guiding principle.

But the space between that statement and what I choose to do to make that happen is wide and full of little distracting critters and oddity.

Maybe if I tease it out here, I can make some decisions that will make actual sense.

I've read some very convincing books, along with a pile of kooky nonsense.

The ones I was convinced by seem very credible... here there are:
 - Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders
 - Changing the Course of Autism: A Scientific Approach for Parents and Physicians
 - The Puzzle of Autism: Putting It All Together
All good, solid, easy to understand, doctor-y stuff.

We completely de-chemical-ed our lives, eat as much organic food and drink only pure (RO) water. But that's pretty much where my biomed journey stalled.

We shunned 'the diet' (GF/CF) for a long time. But, Billy definitely handles dairy badly. When he was much younger and addicted to 'Thomas' milk (milk with Thomas the Tank Engine on the tetra pack), he would often randomly vomit. Always after milk. He also had shocking, unexplainable bouts of constipation that ended in a diagnosis of megacolon. Not an anime villain, a truly debilitating bowel condition that took a LOT of work to turn around. A tip for new players, do not Google megacolon, because the Google image results will never leave your mind's eye.

So dairy is gone. Which means a calcium supplement at least. Our biomed dr recommended a good Calcium/Magnesium liquid, which is great as a combo, especially because magnesium is really good for general calming and for hearing sensitivity. So, we have it. Unopened.

Let me mention here that I would love to get gluten out of our lives too. And as I type I think I sound so lame... get gluten out of your life. Just do it, right?

We have a great ASD multivitamin powder. Unopened.

We have Cod Liver Oil + D. Unopened.

And b12 drops, because I'm too chicken to do the shots. Also, surprisingly... unopened.

Why am I wasting all this money on expensive supplements and not using them?

Because it's such a crap shoot. Because he has such awful reactions. Because every time we start any supps, he does well for a while and then he gets sick and then we have to stop until he gets better. Because we have spent so long getting toilet habits working right, I ate when we throw something into the mix that upsets his stomach and risks random poos at school.

Because I am so sick of sick.

And yet, I know he's not as healthy as he could be. He's not functioning at any where near optimum level. He could be doing so much better than he is, health and brain function-wise.

So... just do it.

I read about all these brave autism mothers who watch their children turn into the anti-christ as they fight off yeast and all sorts of stuff, and I die a little inside. I know I don't have the courage or the faith to put Billy through that. Even thought I'm well aware the outcome could be amazing.

I just have to bite the bullet, right?

I know I do.

I just wasted two weeks of school holidays not giving him the supplements in a place where it wouldn't matter if he pooped at the wrong time.

Gah! Just do it, Foley.

But then, look where that got Tiger...

6 comments:

Mich9 said...

((((hugs))))
Aw, Valerie, you're stronger than you think you are. You're a terrific mom and very protective about Billy's health. And rightfully so. It took me forever just to start giving Nikko gummy multivitamins as a "supplement", and now his speech is improving. Was it the vitamins or was he just ready? I have no idea. FWIW, I think when you have confidence that you can handle more, and confidence that you are in a healthier place physically, you will have the strength to endure moving Billy forward. You are already on that path with detoxing your lives of chemicals, and with exercising. Those are great signs to me that you are strong enough to handle biomed, even in baby steps. :)

Melissa

CindyPDX said...

I tried to post something more but it wouldn't post.

Just wondering, do you avoid TYLENOL? (Acetaminophen) I found out 5 years later after the twins were born is that Tylenol depletes much needed Glutathione. Glutathione helps to rid our bodies of TOXINS. Most kids with Autism already have a compromised immune system AND low levels of Glutathione.
I now avoid giving Tylenol (no matter what our dufus Dr advises) and use Ibuprophen instead. I now also give Cameron 1 gram of chewable Trader Joes brand of Melatonin. Melatonin not only gives him much needed rest, but it also helps to naturally raise Glutathione!

Dufus Ped also wanted Cameron on Ritalin at age 4 years old! (he's now 6). We said a firm NO! I found something natural and safe and without the side effects that Ritalin would cause. It's called Suntheanine. Ever since these safe baby steps were put in place, Cameron has slowly / gradually come around. Happier, more alert, talks more, less meltdowns.. but we still have a long ways to go.

Bite the Bullet? You are brave! Please keep us posted on the progress!

Heather said...

Hey Val,
Baby steps! Just take baby steps! If your boy cannot tolerate something then you take a couple days off and restart at a much lower dose. And I mean an extremely LOW dose. You know your Billy better than anyone on this planet and kudos to you in whatever path you decide to take as far as the supplements go. Remember this is a marathon, not a sprint. We did and do things VERY slow with our son Sean. He is very sensitive too. But baby steps have worked for us. Good luck with whatever you do.

Ro said...

Ditto what Heather said and stop beating yourself up...there's plenty of ignorant slobs out there who'll do it for you, stop stealing their pithy thunder ;)
Baby baby steps, itty bitty piecemeal, trust your gut instincts, you know your child the best and you sound like you've done your homework and discussed everything pretty thoroughly with your doctor.
Pick one to start, write up a small, easy to follow time table and trust yourself ;)

Lisa said...

And on the other hand... it's not wrong to want the school holidays to be fun for the whole family, and not risk them turning into a medical experiment.
It's not wrong to be cautious before of jumping on multiple biomed bandwagons and never knowing which or whether they are helping or all waste of time and money.
It's not wrong to avoid making a child's life a constant round of testing and trialling.

Back to the first hand, and R has been taking an SSRI for a few months now, and is awesomely thrilled with it. His psych recently commented that 'with the wonders of retrovision, he probably should have been on it since he was about seven'. I agree in some respects, but I feel completely differently about allowing a 17 year old to make his own decision on the benefits/side effects of medication, as opposed to me being the one telling the small child that he must take his medication. Especially a small child that does not have a fabulous capacity for communication.

Oh, and I'm still procrastinating on diet - but in a family of five, it'd turn the world upside down.

Mama Deb said...

Totally feel where your coming from, though I am coming at it after 2.5 years of trying the stuff with seemingly little to no results. I've been supplementing all the things that I was told to supplement and yet last November with the last slew of blood tests we found out he was out of range (low) in some of the very freaking supplements we were giving...go figure!
I still give most of the supplements because it does resonate with me that he probably does need them. But there are plenty of days when I wonder why the hell I'm doing it. So, really, don't be hard on yourself about this. You've done amazing stuff for Billy in other ways!!
I will add one tiny thing, though...the ONLY supplement we have really seen results with are the b-12 shots. It is a definite learning curve to give them, and we've stopped a couple of times for months when we get fed up with doing it, but each time we start again we notice better awareness, eye contact, and attempts to talk. It's really interesting to see!