Sunday, June 3, 2012

Poo and cheese...

That may be my favourite blog post title yet.

In all seriousness though, this is another post about poo. It is, hopefully, a beacon of light to the people who are struggling with maintaining poo production and elimination in their lives, especially if the poo in question is the poo of someone with autism.

When Billy was little, he ate everything he was offered. He gave new tastes a go, he had a perfectly predictable relationship with food, and he did not have anything even remotely worrying coming out of his bottom. I worried more about how the dog's poo than Billy's.

His dietary choices started to limit, until he had Transverse Myelitis at three and a half, when it all turned to custard. Actually, it all turned to cement. In a very short time, we were trapped in a cycle of pain, slow motility, constipation and mega colon (not that any doctor ever officially diagnosed any of these things, despite many many questioning visits.) Billy never stopped pooing, he just never pooed enough. He never bloated, and because of his sensory issues, he didn't register the pain until it was severe. Because of this, we didn't know there was a problem, until the problem was a big problem.

We discovered that dairy was a particularly foul kind of glue for Billy's system, as was soy (when we did some early rash product replacements. So we cut them out. Every time we let a little bit back in (and when I say we, I mean the well meaning folk in his life  who are over 60 and believe that ice-cream is the constitutional right of a child), his system would slow down to the point of excruciating discomfort.

He developed chronic reflux, which was misdiagnosed, initially as throat problems (constant coughing to clear the acid burn in his throat and sleep disturbances which were only alleviated by sleeping in what he called a 'tall nest' - a rising pile of pillows that held his torso upright). We took out his tonsils and adenoids, but the throat clearing didn't go away. His breath could've knocked a gum tree over some days, despite scrupulous oral hygiene and at least 3 litres of water every single day.

Enter Dr Poo, and his collection of drugs. Under the banner of 'lots of autistic kids have gut problems' (no specific to Billy diagnostic investigation at all) we were convinced to give Billy osmotic laxatives (here the brands are Osmolax and Movicol) and PPIs (the brand he took was called Somac. Miraculously, they 'cured' the reflux, and they 'cured' the constipation. Problem solved.

Solved, unless we considered the bilious vomiting spells, the (new) chronic anxiety and the fact that as soon as we stopped the drugs, the constipation and reflux returned. Dr Poo (1 & 2, who we went to for a second opinion) thought the drugs were fine, the idea of an 8 year old regularly pooping his pants was just fine, and as his parents we should reconcile ourselves to the fact that it could be a lot worse.

They had a point. It could have been worse, for sure. But it just didn't sit right. It felt like we were being told that since it wasn't awful, we should settle for pretty bad.  Being grateful for things being not as shit as they could be, is about as logical as thinking a nuclear meltdown is OK because it's not Armageddon. He's an eight year old boy who needed drugs to poo every day, with no explanation as to why.

So, we tried a new tactic.

Regular readers and Facebook friends will be familiar with our Journey to Smoothieville. It's been almost six months of daily juices, green smoothies (and all the colours of the rainbow smoothies), superfoods, seeds and nuts (and their associated oils), prebiotics, probiotics and supplements. We stayed away from dairy, we minimised the gluten (we didn't cut it out completely because very single bit of pathology we've ever had done says Billy's body should tolerate gluten just fine, and well... it's one of the healthy-ish things he will eat, in small quantities.)

We started seeing a naturopath, who supervised our choices and tested for things like Leaky Gut (which the Poo Doctors vehemently deny the existence of). We are well aware we are taking the first baby steps on a lifelong journey of health and poopiness.

After four months, we stopped taking the doctor drugs altogether. This week, we reached the six month mark on our journey and thought it was time to try a dairy challenge.

I am proud to report, that a boy-sized homemade mushroom and olive pizza was eaten this week, and there was no interruption in transmission. I may have done a little dance around the bathroom. It may have spilled out into the hall way and into the living room. There may even be a video.

Reading that back, I feel the need to clarify that the 'spilling over' involved dancing and not pooing. Also, the video is brown matter free.

We have a tiny bit more information about what's going on with Billy, gut wise (at the very least, we know he has a less leaky gut than he did six months ago) and we are able to encourage him to make better choices about keeping his own body healthy.

There are two things that strike me in this game.

One, is the whole 'lots of autistic kids have this...' issue. I've talked about it before, and it shits me no less every single day.

Autism is a behavioural diagnosis, not a medical one, at present. It is a collection of behaviours, whereby if you have enough checks against a predetermined list, is called autism. It is not a collection of medical conditions checked against a list. If it was, an ADOS would be a choice of 'GI issues', 'immune issues', 'mitochondrial dysfunction',  'seizures', 'abnormal pathology/neurology', food allergies and intolerances', 'skin issues' etc etc etc.

Doctors lose all moral high ground in my book when they use the 'lots of autistic children have this...' line, especially when they use it at the end of appointments. Like autism's a reason for the condition being there, and for not treating it with anything beyond the long term use of hardcore pharmaceuticals.

These are children. Children who, if they were not already disabled, would not be left languishing in pain or dependent on drugs for basic function. There would be no 'reason' to brush them off, so they would be examined and diagnosed and treated effectively. For some reason, autistic children are not afforded that respect, because 'autism' is a reason. It's a dangerous game of chicken or egg, and fewer and fewer caregivers are willing to play.

The second thing this journey makes me think is that it is sobering how little we know.

It's sobering to think we know so little generally, but seriously frightening how little we know about autism. It's frightening to be the caregiver of a person who's body may or may operate differently to the average bear's body. It's edge of the seat stuff not knowing whether the decisions you make are the right one, and seriously hair-raising suspecting that the decisions the doctors are making are not the right ones.

This week alone, five friends have autistic children who have smacked head first into crisis. The crises are variously medical, all of them are related to the interplay between the bodies of the children, their functioning in the world, and the medication they have been given by well meaning doctors. These crises have ended in hospital for all these kids, as Billy's have many, many times.

At the same time as these crises unfold, a destructive nonsense narrative continues around and between people in the autism community about who is more 'right'. Will the vaccine safety-ers win, or will the neurodiversity-ers come out on top of the right pile. Or are the doctors 'right'? Are the 'I'm so exhausted I'm just getting through every day' families right? It can't be good for us to continue on like this.

We're all right, in my mind, and here's why.

Unless we're all completely off the planet, we are all raising our children the best way we know how. We're getting pooped on and hurled over and bitten and yelled at and cried on... some of us, all of those, every day. And yet, we go on. We're being judged and misunderstood. We're being lauded and celebrated. We're being vilified and we're being recognised.

We're all on different roads on the same journey - trying to get our kids through life.

I write this blog, not to be 'right' or to be celebrated, but to share what has happened on our part of the road. Maybe our journey might help someone else's, or maybe it might shed some light or hope. I hope occasionally, it makes a smile crack on a few faces.

Though I do not know all the folk on this journey with us, I am proud to be among them. I'm not always proud of all of them, but I'm not always proud of myself either (as hard as I try to be saintly).

It makes me sad that even though we are all trying what is likely to be our best for our kids, people in autism world still gain strength from bringing each other down. If nothing else, it makes it extra hard to advocate for your autistic child in the medical and educational system when the autism community itself is so obviously polarised and antagonistic.

What do we know? Nothing much.

What do we all feel? A lot. Most of all, that we want our kids to be well, and happy and respected and understood. Like all parents.

And like many parents, I can tentatively celebrate the effective toilet training of my child. Six or so years later than average, the achievement is still sweet. So sweet, I may do a little more dancing.

And if you know me in real life, you know that my dancing is pretty shit and ultimately very cheesy.


anna said...

I so wish you could have a consult with our gastro. She's all about food allergies and the kind of issues you describe.

I guess the point of my comment is that not all mainstream big name gastros are as closeminded as the ones you saw. But they are few and far between. I am so glad we did not believe the people who told us K's issues were because of his autism. The more investigation that is done with him, the more physically sick he proves to be.

Katie said...

It makes me so happy that Billy's tummy is finally doing well. Doing a happy dance for you guys - that is a HUGE accomplishment!! WTG Billy and WTG mum!!!