Tuesday, September 20, 2011

Sharks can bite me...

This is a cautionary tale.

It involves drugs, sharks and anxiety. Three things that kind of sit well in a sentence together, but are slowly making our lives unpleasant-er than they were before.

And I tell it in case someone else is facing a similar situation and is wondering if there's any reliable evidence of their fears. I'm not a big sample, but I am not making anything up. Which may (or may not) help.

I will preface this take with a tiny, contextualising kind of timeline:
 - Billy gets sick all the time
 - Billy's digestive system starts to shut down
 - We contemplate buying shares in a local underpants manufacturer.
 - Billy has breath that could wither a cactus
 - Mummy takes Billy to a well respected paediatric gastroenterologist
 - Dr Poo is full of... advice, including lots of drug recommendations
 - Mummy feels uncomfortable about drugs (see: Billy's life) but accepts Dr Poo knows poo
 - Drugs fix poo and reflux
 - Billy starts high pitched screaming at passing flies, animals and 'scary' noises.
 - Dr Poo says 'here, have anti-anxiety drug chaser for gut drugs'
 - Mummy makes effigy of Dr Poo and feeds it drugs
 - Billy reverts to natural supplements, halts normal digestion and hysterically refuses to walk past a statue of a shark at the Sydney Aquarium. Ever. Even after Mummy paid $170 renewing annual tickets to the aquarium. An aquarium we have been to a bazillion times before.  Also continues random screaming at imagined irritants and chooses to fall asleep with his hands, three pillows and a set of noise cancelling headphones over his ears.

End timeline, for fear of Mummy committing actual crime on the person of Dr Poo.

There are some of autism's joys we have been spared (in the past). Billy is not prone to self harm. Billy has not developed an interest in making art work out of his poo (perhaps because said poo is quite hard to come by). Billy is not a meltdown kid.

Actually, Billy was not a meltdown kid.

All through his life, as long as either Mummy or Daddy (preferably both) was close by, all was well at Camp Billy. We could avert crisis, we could anticipate disaster, we could talk him down from the edge of anything. As a result, we've been able to live a fairly normal life. I say normal, but I mean, it works for us. We have holidays. We have adventures. We have a lot of laughs. It's not a sit-com life (though it may morph in a Big Bang Theory kind of direction sometimes) but it works for us.

We have observed along the way that Billy has odd reactions to medicines, environmental chemicals and some foods. So, we have adapted our lives to those sensitivities.

This has included being very selective about antibiotics, being oddly entranced by the fact that cortico-steriods turn him almost netrotypical, taking all petrochemicals and bleaches out of contact with him at home, cutting out dairy and junk, eating organic and ceasing vaccination at 3 years. We have done these things in consultation with the relevant professionals (some medical) who have been helping us understand how the Billy organism functions.

Nothing revolutionary there. It's a route many families with kids with autism and other chronic illnesses have taken. Gets a few scathing remarks from Grandma as she clocks my expression as she sprays Christmas dinner with fly spray (hey, the weather is hot here in December, give her a break), but a bit of subtle under table feeding to the dog, and we're all even (except for her dog, but he lives with it all the time so I figure I'm not doing any extra harm).

So, when circumstances sent us into homeschooling, and gave us the opportunity to solve some medical mysteries (see: hard to come by poo, recurrent illness and the spooky ability to touch the back of his wrist with the fingers from the same hand) we jumped at the chance to meet some new doctors.

Billy's paediatrician, a grumpy and knowledgeable older man recommeded Dr Poo, and said he sees most of Sydney's autistic kids. Sounding good so far. Dr Poo is a smooth, professional with a set of tricks designed to disarm mothers just long enough to trust his cookie cutter approach to initial GI intervention.

This is where the whole issue of reliability in medicine gets really murky to me.

Reliability means tried and trusted. It means well tested and researched. It means it has 'worked' for lots and lots of people. All good, I hear myself think. I hear words like 'safe' and 'no side effects' and I think, 'Relax, Foley. It's OK.' Dr Poo may have even used similar words, though of course, he substituted the word 'Mum' for 'Foley' which is affirming my child's individuality in a reassuring way. Not.

Cut to the chase, and the administration of a PPI called Somac (to handle the reflux that resulted from the hard to come by poo) may have caused physical (non infection related cyclic vomiting episodes) and mental (chronic anxiety) side effects in Billy. Either that or the use of osmotic laxatives may have caused these things, because they did not exist before the administration of these drugs.

We have stopped the reflux drugs. We have stopped the laxatives, though occasionally they are necessary in combination with the natural supplements (otherwise the pain and the sacrifices to the great god of underpants begin again). The vomiting episodes have ceased.

The anxiety has not. It may be slightly less acute, but it is no less insidious. I have no idea whether it is possible to retreat from this. I don't know if permanent 'damage' has been effected, or if anxiety is a kind of door a kid walks through and then has to be coaxed back over his lifetime. I wish I knew. More than that, I wish the damn doctors knew.

Because they were quite happy to assure me of the safety of the drugs. They were insistent we had nothing to worry about. They were wrong.

As were the doctors who said continued vaccination was safe after the tongue swelling incident at his 8 week vaccinations, and the ones who said getting measles from the MMR was just fine, and the naturopathic ones who refuted the neurologist's claim that a homeopathic detox could have contributed to Billy's Transverse Myelitis.

You'd think I would have learned. I thought I had. Problem is, there's no reliable evidence backing up what I thought I'd learned, so I have no defence when doctors (other parents, therapists, grandmothers) insist that some drug or other would be safe.

It's like a game of 'There was an Old Lady who Swallowed a Fly', except with a real live child. I don't like the end of that song much at all, so after experiencing the ingesting of a metaphorical fly, a spider, a bird and half a cat... I'm not playing anymore.

While we retreat to the world of Dr Light Bottom (see my last entry) and his magical, mystical world of genetics, Billy and I will endeavour to defeat the scary shark statue.

Without drugs. Without (hopefully, eventually, somehow) anxiety. With organic chocolate (for me at least).


Lisa said...

Sorry Val, I'm going to ramble on your blog (again).

Is anxiety a developmental thing? And is it almost inevitable to some degree in ASD kids?

Up to a certain age, kids (all kids) haven't got much notion of cause and effect. First up they learn that sharp/hot hurts, and no longer stick their hands on the stove. Immediate stuff.

As they develop, they(we) are able to project into the future, and ponder what might be the outcome of our actions.

Most people keep it fairly 'real'. Then there are the worriers of doom and then the cripples of anxiety.

Young kids for a while will trust an (expert) parent to override their worries, but as they get older and more intellectually independent, 'trust mummy' won't cut it any more.

If you have poor executive function, and poor planning ability, I think the likelihood of being a worrier/anxious is high.

In other words, bring out the anxiety toolbox, and start teaching strategies.

Speaking with perfect 20/20 hindsight, wish we'd hit the 'mild' anxiety much harder with at a young age. CBT at 12 was helpful, but not ultimately enough.

Patty O. said...

Wow. That just stinks. I hate it when doctors insist on medicines despite their side effects.

Can I ask you a question? What natural remedies do you use for constipation? My son has been using Miralax on and off for months, but I would much prefer something natural to get him pooping more regularly. Thanks!

Mama Deb said...

I'm so behind on my blog reading. Been feeling so apathetic about everything for the very reasons you've stated above, that it's been difficult to focus on my blog or anyone else's. We've got a lot of notes to compare come November! Maybe we should just revert back to cavemen ways and feed our kids only leaves and the odd dinosaur that we're able to hunt down??

lynn said...

Hello Valerie,

I have just found your blog and I am so enjoying it. Have you tried the GAPS diet? My son was much like yours and it has worked tremendously for him and our whole family....hypothyroidism, allergies, ect.
I also love apple and homeschooling too...