Monday, May 10, 2010

Now here's something interesting...

Well, it's interesting to me!

Today we had another chat to the woman we will call 'nice doctor'. She was the one we saw last week when Billy was sick, who stood out from the crowd (and I mean crowd) of doctors we have met in Billy's lifetime.

She called (yes, she called) to give us the remaining results from the blood tests she took when he was sick.  The results are very interesting, for reasons I never would have called interesting.

First, no coeliac disease. I'm glad about this, though it still doesn't rule out going GF. We will do a GF trial.  (See how I convince myself...?). But I am Irish born, the last of six kids. There are two diagnosed coeliacs among my siblings alone. There's a bunch of auto-immune stuff in the family, and a whole lot of allergy and intolerance. I wouldn't have been surprised at all if Billy's coeliac blood tests had come back positive, but they didn't. Which totally buys a procrastinator time. Not such a good thing, I know, but I digress (again).

Then, came the other blood results. She had ordered a full Ig array, including sub classes, and the standard blood sugar, and other blood levels. The results... nothing out of the normal range. Nothing beyond what would be normal for a kid who hadn't eaten and had been vomiting for four days.

You'd think we'd be disappointed. No results? Nothing abnormal? Are you kidding me? He was frighteningly limp, unresponsive, unable to kick the bug... what's up with that?

Autism is up with that. Sensory Processing Disorder is up with that.

This set of results, taken (finally) at the peak of an infection lets us know that he's sick, for sure. But, it's his particular autistic profile that takes it out of him when he is sick. He is depleted by the fight. He is disembodied by the feelings. He is dissolved by the symptoms.

I'm sure I've linked to this article before, but I'll do it again. It's all about shutdowns in autism.

Very briefly, we didn't lean toward autism as a description for our toddler's 'issues' because we didn't have meltdowns, we had shutdowns. We didn't have tantrums, we had the Dalai Lama. We didn't have rigidity, we had the ultimate cruiser. Billy is compliant, to a 'T'. As in, 'Too' compliant.

This article was the first one that made us go, 'Oh... that's not good, even though makes old people think he's the best kid on the planet...'

Instead of acting out, Billy internalises. He's not a fighter, he's a flighter. It's way more socially acceptable, but it's just as damaging to his health. He is struggling just as much (if not more) than a kid who is screaming and biting. He is deeply, deeply overwhelmed. And we all know what that feels like... Everyday life is one thing with all its noises and movements and nuances. Sickness is quite another set of things.

So, now we know, (thanks to 'nice doctor') that our many trips to the hospital are not necessarily necessary. This discovery will save us time and money. That's good. We can ride these incidents out, hydralyte and panadol/nurofen in hand.

He is getting sick like a normal kid, it's just that he's experiencing it in a different way.

Quite the metaphor for his life, really.

Big breath out for us, and a big pile of food for Billy... check out the weight loss!

4 comments:

Katie said...

Skinny Billy!!! Hope he can regain soon.
I am SO glad you found a good doctor, and I hope you can keep seeing her. That makes a HUGE difference!

Jayne said...
This comment has been removed by the author.
Ro said...

At least you're getting some answers even if it's to rule stuff out.
This article HERE is how a recent study found people don't need to have Coeliac's to experience the symptoms of it.

Lisa at work, so not signed in said...

That link on shutdowns is absolutely awesome. I mean, I've known that stuff for years, from bitter experience with Dreamer, but have never seen evidence/science anywhere before.

Oh how I wish I'd had that paper 10 years ago to wave at teachers.

Never mind, it's still nice to be validated.