This week, the autism rollercoaster threw us into a new loop, one I didn’t even know existed.
Isn’t it nice of autism to do that? I must remember to thank it in a card next Christmas.
After a lifetime of Billy poo problems, we were finally referred to a really good paediatric gastroenterologist. Win. Originally, our appointment was at the end of July (first available when we were referred in January), then we got bumped up the list to May. Win-Win. They sent us multiple text messages to remind us of the appointment, the location and the fact that the first consultation was going to cost $480.
Yes, that’s right. $480. I wondered if the appointment came with a free cappuccino, at the very least. $480 seems like a lot of money to me. It’s about what my first car cost (no, I wasn’t born in 1920, we were just spectacularly unwealthy and I was such a bad driver, it didn’t matter what the car looked like). $480 is way more than a week’s food for us. It’s as much as we would spend on alcohol in a year. Ish.
Once I got over the $480 fee (because clearly, I have), I gathered all the blood tests, wee tests and poo tests and nerve tests and MRIs and nerve conduction studies and spinal taps and hospital discharge reports and a couple of random pages out of Vogue Magazine just to bulk out the folder, and headed off.
I have to say the doctor did not make me happy, at first.
He told me my son had full control of his poo, no doubt about it. I thought that was an odd statement given that our daily sacrifices to the great god of underpants could clothe the bottoms of a small African country. I’m thinking, does he think Billy is lazy? Or does he think I’m lazy? Surely if he was able to control his poo, we would have found a way in 7.5 years to harness said ability...?
But, as the appointment went on, he explained that Billy had the physical capability to control his poo because if he didn’t, he’d be pooping himself while he slept. He added the fact that Billy has full control of his urine, and it’s very odd without a traumatic injury to the vicinity, to be able to do one and not the other. He also added that while Billy has the physical capability to control his poo, he did not have the ability to harness that capability. Yet.
I had been holding on to the fact that the Transverse Myelitis Billy had when he was 3 had wiped some vital poo control nerve out. I was reluctant to let that theory go. I didn’t invent my theory, the doctors at the hospital gave it to me, nevertheless, I liked it better than the ‘my son is lazy and if he does go to University it will be in nappies’ theory which was the only one my brain could come up with.
The $480 doctor had a much more credible approach.
First he examined Billy, doing stuff that I would never have thought a Gastro doctor would do like moving joints and limbs around and testing reflexes. He asked me lots of questions that no-one had ever asked, about Billy’s eating habits as a baby, about Billy’s sleeping habits and about his skin and eyes and teeth. Then, he put a patch on Billy in preparation for blood tests, and sat us both down for a talk about poo.
We’ve got reflux drugs and osmotic laxatives, neither of which I’m thrilled about, but which I recognise are necessary. We’ve got a new fruit and vegie heavy diet which Billy has unbelievably taken on. And we have a new piece to the Billy puzzle. One I really didn’t expect.
The $480 doctor thinks Billy has a connective tissue disorder.
He doesn’t know which disorder, hence the blood testing, but from his explanation, it brings together a bunch of odd parts of Billy’s health. He says, in a nutshell that Billy’s system is working, it’s just moving super-super-slow.
Is it degenerative? Don’t know. Will it effect other parts of his health? Don’t know. How do we fix it? We can’t.
Is it related to autism? Don’t know. Is it related to Transverse Myelitis? Don’t know. Will we ever know? Don’t know.
This $480 is coming up roses, really. One part of me is happy to have a doctor with a theory. The other part is thinking life was a bit easier without one.
For now, we take the drugs. We attack the poo problem. We wait for the results of the tests, and prepare for more tests.
One thing we do not do? Google. No way, no how. It’s like a nervous breakdown lucky dip. I will not go there.
Well, not again, because I didn’t really know what a connective tissue disorder was, so I Googled.
And instead of connecting the dots, I ended up creating a nightmare scenario that ended in me drinking way more than $480 worth.
Off we go, into the future, one poo at a time.
Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.