Friday, May 6, 2011

Connecting the poo dots...

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.

Even awesome-er.

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.


  1. Yikes! 480$ is steep. I hope the test results bring you something to work with and not just more worry.
    Love your sense of humor

  2. Valerie WOW
    And many many hugs
    I am currently reading "My stroke of Insight" where the author who is a Harvard Neuroanatomist - has a stroke - makes a recovery and then talks about what was going on inside the brain -
    What is fascinating is that her account sounds so much like some children's autism
    Its strange there is so much research on the cause of autism - but almost nothing that explains the actual neurology of the neurological disorder - what is the neurology of regression
    Anyway I did not mean to write an essay here - its just fascinating

  3. Eeeeek, there are like 200 different disorders that affect connective tissues!! Of course I Googled! ;)
    Shame Valerie, it's not great not knowing what is going on with your child...... let's hope that you are now on the right path!

  4. yikes! $480 I really hope it turns out for you and Billy. I trully hope it can be helped and will not cause any future health problems. Much love and hugs xxx

  5. We had some serious poop problems here as well. Getting my daughters thyroid properly diagnosed and treated and removing milk from her diet helped a lot. She is still not potty trained and almost 5.
    $480 is ridiculous!!!! We drove 3 hours to another state and paid a crap load of money only to have that specialist want ALL reports from anyone she has ever seen so that he could review them and give his opinion on everyone else's opinion. He never even looked at my daughter. I didn't want a review of other's opinions - I can read reports. A total waste of time and money. We never went back and just for him telling me to get everyone else's reports cost a couple hundred. Where do I get a job like that?

  6. Oh, Valerie, of course you Google'd. I would too. The only connective tissue disorder I know of is Ehlers-Danlos, and if Billy had that you would know it, as he would have already dislocated stuff, already, several times. Scary stuff.
    We, too, had an expensive doctor with a theory. $200 to test balance...every 3-4 months. Thankfully we convinced our insurance to cover it, every 3-4 months. I'm not sure it would have been worth it had we paid cash...but it didn't hurt anything. Hoping the $480 doctor does no harm. :)