Last night I received a phone call from our ever lovely case worker at ECIS. She was keen to know whether Isaac would be involved with Early Intervention this year and in what capacity we were able to attend.
During the course of the conversation, Isaac’s bowel issues came up and she asked whether we were being seen by the Incontinence Clinic at the Royal Hobart Hospital.
No? We didn’t know about the incontinence clinic (even though we have a child with a constantly leaking bowel), or that we could have been referred to them. Our Paediatrician, despite working at the same hospital, never bothered to let us know about it. Then again, it’s a bit hard to refer someone on to a clinic when you refuse to listen and take the issues seriously.
In hindsight, OF COURSE there is an incontinence clinic at the hospital. Doesn’t that just make SO MUCH FUCKING SENSE?
It feels like we’re coming at all of Isaac’s medical problems from three steps behind the ball. We don’t know half of the information we ought to, because no one bothered to listen to us long enough to find out what we need.
We see our new Paediatrician in a month. This guy comes highly recommended, both from our GP and more recently, from our ECIS case worker. He is, by all accounts, good at what he does.
This will be a change for us.
Isaac is a complicated case. He has Ehlers Danlos Syndrome. His joints are lax, his gut is as well. He has issues chewing and prefers soft foods. He has Autism, but is high functioning enough that our last Paed doubted the diagnosis. Then Isaac will spend 10 minutes repeating a TV show script over and over to himself. He has sensory issues surrounding food. He doesn’t like new people, or crowds, or any noises louder than normal speech. His bowels don’t work correctly and no one knows why yet.
He is complicated.
But aren’t all children complicated and full of contradictions?
We’ve been telling doctors for over two years about Isaac’s bowel issues, being brushed off every time. Finally, when we realised that our Paed hadn’t rescheduled us after we couldn’t make our last appointment (No, we’ll send you out a letter, yes, okay, thank you, bye!) we demanded that someone else do something.
Having to fight for every step that we’ve taken on this journey with Isaac means that I am tired. It means that I don’t trust the medical professionals and their opinions anymore. It means that I have tried everything in my bag of tricks and still come up with nothing.
It means that I really need this new doctor to DO something and MAKE THINGS WORK.
Because at this point, Nathan and I are left looking at each other, exclaiming that OF COURSE there is an incontinence clinic and OF COURSE, no one thought to maybe refer us to it. Despite, you know, the INCONTINENCE ISSUES.