Wednesday, April 27, 2011

That feeling in your gut...

Today, while waiting in the wings of a news studio here in Sydney, about to do an interview to promote the book (that one, over there on the right), I got an SMS asking me to confirm an appointment for Billy with a well recommended paediatric gastroenterologist.

I confirmed the appointment for next week, and stifled a tiny, excited feeling in my own gut that maybe finally we might get some help with Billy's health.

I should contextualise by saying that I am a bit of a catastrophiser. As I type this, I hear the stifled 'You think?' of people who know me in real life. I worry. A lot. I actually plan worrying time. I have worrying management strategies. I spend way too much time worrying whether my worrying is a problem.

The whole deal with worrying, in my mind, is actually some bizarre trade-off with reality. The idea being, if I worry a lot then the chances of the object of my worry becoming a reality are somehow lessened. I have no idea where this dysfunctional thinking has come from, but I cling to it, like a careless recreational fisherman on his upturned boat.

The reality, living with a child like Billy, is so often the complete opposite, that I find myself wanting to stab holes in my upturned boat. I stop myself, purely because I am worried about sharks.

It's not healthy, not productive and generally the sort of thing that cigarettes and beer used to blot out in my youth.

Here is why I have a gnawing feeling in my gut.

When Billy was very young (20 months or so), we were referred to a paediatrician on my insistence. The paediatrician - a woman, told me I should take anti-depressants and send my child to long-day care. I asked for a new referral.

The new paed, on first clapping eyes on Billy, said, 'Oh yes. very autistic. Now, take gluten and dairy out of his diet and spend $1500 on primers, enhancers and supplements.' I asked him whether he should run a diagnostic tool on Billy to actually (perhaps) diagnose autism, and he replied, 'Not necessary. He's clearly on the spectrum.'

This experience turned me so far against any kind of biomedical advice, I shunned everything. Screw him, I thought, I'm making grilled cheese sandwiches for every meal. Fish Oil... bah! Vitamin b12... nonsense. That Children with Starving Brains book... total crap.

Five years on, I'm not proud of my petty protest. I was wrong. My son has a mighty, mighty life altering problem in his gut. He cannot control his bowel well. He has silent reflux.  He vomits for no reason, frequently. He has breath that could shock a sailor with its 'colour'. His tongue looks like he's been drinking coffee (he hasn't... he's seven, and already doesn't sleep all that well).

I'm not wanting to imitate Cher on the aircraft carrier (who could look that good in mesh and lycra??), but seriously, if I could turn back time, I would have listened to that stupid doctor. He handled to moment badly, and I handled that moment like a duck trying to play piano... but he was right.

How do I know?

In a fit of pique after a round of random vomits and chronic no-poops, we cut dairy out of Billy's diet, and replaced it with a calcium supplement and an ASD multi-vitamin. The consequence? A drastic reduction in random vomits and a much easier poo experience. It's not gone, but it's a billion times easier.

Fish Oil, makes for improved cognition and much less anxiety. B12 makes for a brighter boy generally, with far less lower gut pain. Motion Potion stimulates and bulks bowel action (minus the gluten and dairy) and makes life slightly more manageable lower gut wise.

As Billy's Mum, I desperately want reliable guidance. I want people who know WTH they are talking about to advise me. I want to feel safe and supervised as we attack what is clearly a medical problem.

I have not found that yet. In fact, I am fumbling about in the dark. I want tests. I want evidence. I want information, and ultimately healing. I'm aware we might be waiting for a long time for these things, but I'll be buggered if I let it be like this forever.

Today, a dear friend shared this article with me. It's about Dr Andrew Wakefield, a man I refuse to condemn. I won't write him off, because I think he asked (and continues to ask) 'why'? Anyone asking 'why' and 'how' and 'where' and 'how often' and 'in what circumstances' and 'in reaction to what'... I support these people. I commit, here and now, to giving these people more time than I gave the creepy doctor who tried to drain my credit card.

I, and so many others, need to know 'why?' Not just for our kids, but for future kids. Though, I'd definitely take some clarity for my own kid right now, if there's any lurking about.

So, I'm hanging on the GI doctor as a starting point. After that, who knows?

This burden is too heavy. Not so much in emotion, but in responsibility. I am not a doctor, I'm a writer, for heaven's sake. I do not feel comfortable making big decisions about my child's medical health without medical supervision. I trust and love my autism buddies, but I am rational enough to understand that their decisions are based on their child. Not mine. I learn from their journey, but I cannot blindly mimic it. It would not be appropriate for my kid to wear some other child's glasses on the basis that they seemed to have a similar kind of short-sightedness.

This autism rollercoaster swings from denial, to cynicism, to fervent belief, to fear, to discovery and back again. Some days, I need to get off. Because I really really hate vomit. Mine, Billy's, anyone's...

I know for sure that a mother's gut instinct is to be trusted. I really hope the gut doctor provides us with more than instinct, and a cookie cutter approach to gut troubles.

Or, I too, may be forced to toss my cookies, in his general direction.


Nicole English said...

'desperately want reliable guidance'
You and me both sister :)

Great post
Love to get my hands on some of those supps,...know of anyone carrying in ones handbag?

Patty O. said...

I know EXACTLY what you mean about wanting some reliable guidance. I have that thought just about every day of my life. Oh, that I could find it!

carriemumof2withasd said...

I know how ya feel :( I would love some reliable guidance from the medical profession as to why my son keeps getting sick! Why he's always tired? Why he has big black bags under his eyes? Why is he so pale and lethargic? I truly hope you get the answers you need Val :)

P.S I worry a lot too :)