Why do we say someone is ‘sick as a dog’? I know the sight of a dog wretching is not pleasant, but surely not many things manage to look attractive while vomiting. Why not sick as a cat, a camel or a little boy?
Why am I talking so much about vomiting? Because since my last post here about being Hospital Parent, Billy has been similarly sick four more times. If it wasn’t so serious, it would be funny.
It’s testing my parental resolve, this stuff. There really is nothing like watching your child miserably, repeatedly hurling bile to wash away any sense of control and confidence.
We are using this year to try and get Billy’s health under control. We are doing this because he spent almost one third of the school year away from school sick last year, and though his teacher believed Billy had no significant health issues, we felt otherwise. While we homeschool, we’re handing over gigantic piles of cash to a variety of doctors and finding out some amazing stuff.
The first is that on top of autism, Billy very likely has a connective tissue disorder, which has caused lifelong issues with low motility, constipation and reflux (the silent kind).
The second is that the bones in Billy’s ears are unusually thin, which is likely to be causing the intense hyperacusis that defines his life.
The third is that the health system in Australia needs some serious doctoring of its own.
We have universal health care in this country. It’s a system that, at the very least, means that every citizen has the right to be seen in a public hospital. It’s not perfect, and the waiting lists are extraordinary in some cases, but it’s there.
Many folk, including us, also choose to pay for private health insurance, so we can choose the hospitals and doctors most suitable to our needs. This has been very handy, many times over Billy’s life, especially because his hyperacusis makes being in a public hospital, with manic triage and shared wards, a real struggle.
Flash forward to this year, and we’re very glad to have the private insurance. He’s been hospitalised way too many times already, and we’ve been crossing the city to see a huge variety of doctors.
The key doctor this year is a gastroenterologist we will call Dr Poo. Dr Poo is a very nice man, who sees a lot of autistic children. He does not believe in autistic pathology (sometimes I like to say the name Wakefield, just to see Dr Poo turn a much lighter shade), but he does believe that about one in four autistic patients he sees have connective tissue disorders. Which feels a little like a kind of autistic pathology to me, but hey... I am not a doctor of anything.
Dr Poo has an odd view of autism, built (I’m guessing) on years of trying to convince autistic kids that he should be allowed to poke then, prod them and occasionally stick tubes in places they’d rather not have them. He responds to Billy as though he is a collection of unusual habits and behaviours. To his credit, Dr Poo respects those behaviours. To his detriment, he does not see those behaviours as having their roots in biology.
He has treated Billy, in the same way he has treated all the kids he sees with constipation related issues. Drugs. The drugs will clear the system out, then the system will (hopefully) learn to work better. In Billy, during the clean-out phase, we have hit a wall. Five times now.
The uncontrollable vomiting is a drug reaction. How do I know this? Because I am Billy’s mother. Because I know where he’s been, who he’s seen and what goes into his mouth – so it’s not a bug. He is one of those autistic kids that eats the SAME thing every day, so it’s not a food reaction.
He lasts two weeks on the drug combination he is on, and he starts to hurl. The hurl becomes bile, and a combination of drips, drugs and time have to be used to get things normal again. Each time, Dr Poo tells us to go back to the drugs. And in two weeks, it happens again.
It’s not a twisted bowel. We’ve tested for that. It’s not appendicitis. And it’s not… normal. It didn’t happen before we went on the drugs and it’s happened five times since. There have been other reactions (episodes of explosive poo, skin rashes, excess saliva) but the bile vomit is the most consistent.
And yet, each time, Dr Poo says take the drugs again.
It’s Saturday night here now, and Dr Poo does not work on the weekend. In fact, the paediatric ward at Dr Poo’s private hospital is not even open on the weekend.
We have to ride this latest episode through to business hours Monday, or brave the public hospital in flu and meningococcal season.
It doesn’t seem right.
Now that I’m a home schooler, I’m handing out my own report cards.
Dr Poo gets a B-. Could do better. Needs to listen more in class. Needs to play more respectfully with autistic children.
Dr Poo’s hospital gets a D. We’re paying you people. Do better. Offer the service your website promises. Or mention on your website that you will be closing when it is no longer convenient for you to be offering complex things like rehydration while a patient waits for the doctor to clock on.
Billy, unsurprisingly gets a A+. Attitude awesome. Autism awesome. Maybe a B+ for the added bile.
Come Monday, I’m handing out demerits until someone listens.
And, I’m doing a Nancy Reagan – I’m saying no to drugs.
At least for Billy.
Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.
I have some experience with the whole connective tissue thang. Coop and I both have hypermobility syndrome, which is a connective tissue problem, and Coop had encoprisis and holding on probs for many years. He also had terrible reflux and vomiting in his first year. ( Until I just read your post I had not put the obvious 2 and 2 together). A lot of my probs I believe may well be linked to this genetic make up ( if you haven't read it there is a link to a blog I have written after Bec posted on FB, that will bring you up to speed).
Would love to chat more about this if you think it would be useful re Billy?