Monday, January 23, 2012

I think I'm missing something...

Soon, we head to a new gastroenterologist with Billy.

I will call him Dr Poo 2.

I'm trying to get my digestive ducks in a row, as we prepare for a new man in our lives, because I am aware there's a limited supply. I can't keep going to new doctors and going, 'The other guys are tools, I'm hoping you aren't.' I guess I can't also keep asking for information that might be impossible to find. I just need these guys to be honest with me.

Quick poo recap.

Billy is 8. I do not recall being alarmed by anything poo wise until just before he was diagnosed with Transverse Myelitis when he was almost 4. Over a week or so, he had episodes of crying out in pain. We assumed the pain was tummy pain. It may or may not have been given the expected antecedents to TM. He was regular, in a poo sense. Then he started vomiting, and a week or so later, he was having steroid infusions. He recovered, which is supremely awesome, but from that moment, we have been residents in poo hell.

Billy has only very rarely missed a day of pooping, but it has never been easy. It has only rarely been hard (in the not soft sense) but it has been deeply challenging (in the will this ever be something we do not have to think about sense).

We did not know, until we went to the dentist, but Billy has been refluxing chronically for a very long time. After a period of cyclic vomiting attacks in response to PPIs, an endoscopy apparently proved the reflux was cured. We stopped the PPIs and the reflux returned with a vengeance (but thankfully, the cyclic vomiting stopped... that's kind of a win, right?)

And that's where my understanding ends.

There are diet interactions, for sure (dairy is like intestinal cement for Billy), but no diagnosed intolerances. We have an extended family of coeliacs (on my side), but the doctors consistently tell us Billy does not have coeliac disease, or a notable reaction to gluten. We go on and off various diets, we try a variety of supplements, we are currently reliant on osmotic laxatives. There are causation theories voiced (connective tissue disorders, genetic disorders, immune disorders) but they are not investigated.

Some things help, some do not. But I am a kids' tv writer, not a pharmacist/dietician/doctor, and am just a little concerned that my patchwork ideas on GI treatment plans may fall wide of the therapeutically sound mark. Call me crazy, but my comfort zone is closer to poo jokes than poo treatment.

I am no clearer on why this is all happening (and therefore what are our best choice options), than I was when we entered the gates of poo hell, four underpants-abundant years ago.

I may be in complete denial about what medical science is capable of. My logic is this.

If we can grow an ear on the back of a rat, we can surely come up with a valid theory about why Billy can't poop without drugs, and has breath that could knock Superman over (you know the Spongebob episode... that's Billy some days, and his teeth are fine).

I want a bit of 'why'. I want a bit of 'how'. I want a framework, with key words I can safely google (without vomiting in my mouth with fear, as I do).

  • Am I wrong in thinking it is not OK for a child to be reliant on laxatives?
  • Is it odd to be concerned that the reflux drugs caused a violent reaction that the original Dr Poo insists could never have happened? (in the end, we brought video, dated and cross referenced to dosage times, but he was still dubious)
  • Is it out of the realms of normality that we would like some guidance on what's going on, why it's happening and how to decrease the likelihood of it happening forever?

Since Dr Poo 1 and I last avoided eye contact with each other, Billy and I have been through genetics screening and allergy testing. Well, actually we have seen the doctors and done the semi-invasive testing. There's a semi-trailer load of DVDs waiting for Billy tomorrow, if he relents and does the blood tests both doctors have ordered.

We will take those results to Dr Poo 2, among with the charming pictures of Billy's hernia and oesophageal blistering, and see how we go.

In case it's me that's stalling this process, I am considering inventing a new persona - bit of non-toxic hair dye (a whole other story for another day), maybe a hat, a fake accent. Maybe if I approach this doctor relationship as a kind of a improvisational script writing process, I might be able to understand what the hell is going on.

If it's impossible to tell why Billy's gut is a mess, just say that.
If we should totally revise his diet, tell us what to do.
If there's a possibility of an overarching condition (not autism) causing this, investigate it.
If you think I am a crazy woman, join the queue, build a bridge, and get over it.

It is not OK to me, to accept non-specific ill health, under the umbrella of autism.

He is autistic, yes. And many autistic people have gut problems, for sure. But does autism cause gut problems? Who knows? Surely we have to understand what causes autism, or even what autism is (let's start at NOT a collection of behaviours, but a set of medical conditions) before we just drug these kids (adverse reactions, be damned) and send them home.

My aim is for my child to be happy, healthy and free of the possibility that he might crap himself in public. I would like to achieve this without a lifetime of financial contributions to Norgine or any other drug company. I can't help thinking that a life on prescribed laxatives, starting at 7 years old, probably morphs into an future filled with adult nappies, heavy duty deodorising products and very few friends. I'm not willing to accept that yet.

In all seriousness, I feel like we autism families are paying the price for the battle that dare not speak its name. While large pharmaceutical companies and forward thinking doctors fight each other for the medical high ground, we are left sitting in examination rooms apologising for the fact that our kids are sick.

For what its worth, I stand behind Wakefield and his colleagues. I stand behind Dr Bock, and Dr Kartzinel and Dr Jepson and all the doctors who care about asking why. I don't care if they are not 100% right all the time, or if they change their minds, or that the conservative media manages to portray them as dodgy criminals.

I care about one thing - the fact that they are trying to understand why so many autistic kids are so very sick. I care that they are trying to understand why there are so many more autistic kids than there were ten, five, hell, two years ago. I care that they are trying to understand.

Cos, I'd quite like to understand too.

So Dr Poo 2, please don't just go ahead and treat my kid, help me understand why this is happening. Do not brush off my concerns, explain how I can minimise them. Do not, ever ever ever, call me 'Mum'. Unless you are Billy, and it's 2030 and you are now my doctor.

For now, I'm off to stockpile DVDs for tomorrow's blood-letting adventure, and to peruse the image altering hats at my local shops. You may or may not recognise me, next time you see me.

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