Sunday, August 26, 2012

Enough with the drugs...

Today we head back to Dr Poo, for what must be a six monthly check in. I kind of like that I don't know when the last appointment was.

In the time since we last saw him, we have made pretty significant changes to Billy's gut life, and we have seen pretty significant gains too. It's by no means perfect, but it's better.

I feel like the highschooler with a note from my mother to say I'm allowed to smoke at school, as I head back to the GI, just kind of in reverse.

And here's why.

To Dr Poo and to so many others, we say, 'Thank you, but we don't want to take the drugs.'

I want to put a giant disclaimer here.

I am not, and would not ever ever ever make a comment on or pass judgement on anyone who chooses to medicate their children or themselves. Everyone does the best they can, and more than that, it's their life, their choice and their internal logic that I can never and would never presume to understand.

Having said that... we get a lot of pressure to medicate Billy, from various places and for various things.

The GI would rather Billy took the drugs to keep his bowel moving, and to reduce his acid production so the reflux isn't an issue.

The neurologist would rather he started on anti-convulsants to reduce the number of seizures.

The paediatrician suggests we consider medication for attention/focus/stillness if we want to maximise Billy's school and social success.

We listen, we research, we talk, we observe. In the case of the GI drugs, we gave the drugs a red hot go.

But, so far, the hardcore pharmaceuticals have not proven to be the road for us - in theory or in practice.

We have seen drug reactions that doctors have no response for, but 'wow, I've never seen that before'. We read listed side effects and quake with uncertainty. We do not feel comfortable with the uncertain future that comes with long term untested use of big deal drugs on little growing bodies. We have the space in our lives to made lifestyle changes to accommodate Billy's needs, and the good fortune that he is not showing signs of being a danger to himself or others.

This is not meant to start a debate about whether drugs are good or bad.

Drugs are good. Drugs are bad. And what's a drug anyway? The doctors delight in telling us that supplements are drugs. 'Natural' substances are drugs. Drugs come from plants. I'm sure they are right.

There is no doubt medication is the only answer for many people. Right now, it feels a lot like once we walk through the hardcore medication door, it is very very hard to turn around and walk out again. We want to be genuinely and seriously convinced it's genuinely and seriously necessary before we turn that handle.

Here's some of the thinking I am falling back on (and am certain will evolve and explode many times over on this journey). I've ranked them from easiest to hardest to swallow (in my experience, and in a symbolic tribute to the substances we are considering).

What the hell is in there?
I have learn to not give Billy foods containing (randomly chosen food additive) Butylated Hydroxyanisole (E320, perfectly legal to add to anyone's dinner).

I do this because it's a synthetically manufactured chemical, and I can source enough reading to know it's not doing any good (at the very least) to our bodies. We do not need BHA in our bodies. The food industry needs it because it's doing a great job of stopping fatty foods going rancid on the shelf.

I can at least understand what is in the supplements we choose. I have a teeny tiny bit of knowledge based power. I'm no scientist, so it's not a massive advantage, but it's something. I don't currently have that right when it comes to pharmaceuticals. So I'm more cautious about them.

What the hell is going on?
Billy has odd reactions to drugs. Doctors don't know why. Doctors actually, genuinely demonstrate a lack of care about why. We think and read and ask and research, and if it seems right, we choose to manage the condition over masking it with medicinal bandaids and risking the side effects.

On top of that is the ever growing feeling that 'they' (those who make and sell medicines) are not in this game for our health. I'm not saying safety isn't a priority, I'm saying a bit of collateral damage is not a reason to consider not using the drugs, to the medical fraternity.

Drug safety is based on statistics, not individuals. Billy is an individual. Until someone can give us a clear framework for the drug reactions, we will remain cautious.

Even if he didn't have odd drug reactions, we would be cautious.

What the hell are we expecting here?
Billy is Billy.

Right now, he is happy. Right now, he is on a semi upward trajectory in terms of the challenges he faces. Without wanting to sound like I'm selling front row tickets to my own show, I'd like to think some of that upward movement is because we have made significant changes to our lives to help him.

I'm not even considering the supplements or diet stuff here (though I'm sure they are contributing) but at the most basic levels, we live our lives to reduce his stress levels. We changed our lives so he can learn outside of a school/classroom setting which proved to be immensely stressful to him. We acknowledge his unique stressors and work with, not against them in a very practical sense. We allow him to lead in processes of scheduling and change in our lives. We keep a consistent (and yet growing) team of qualified professionals around both him and us (conflicted as that makes the grown ups in the room some days).

Let's choose a few 'problems' that the drugs are meant to address.

Can he sit still? No. Does it matter? No. Will drugs 'teach' him to sit still? Tough question. Will they make him sit still longer so he can comply with the requests of someone else? Maybe. Could that help him learn to sit still? Jury's out. Is sitting still a giant concern to us? No.

Are we willing to risk having giant adolescent in constant movement? Totally, especially as the potential alternatives seem either not such a big deal (ie. he can sit still) or catastrophic (living with the long term effects of a drug whose long term effects are unknown, even in kids without whacky drug reactions).

Again, the fact that others are willing to take these risks is a tribute to them, and all I can say right now is 'thank you', because somewhere along the line, you are helping all of us know what the effects of these drugs will be.

Can Billy control his bowels effectively? No.
But he is way better at it than he was before. His pathology/serology backs this up 100%.

Is he seizure free? No.
But are the seizures doing him damage? Not according to his neurologist. So...

Can he function better as a Billy?

Yes. No doubt in the world. Do we measure function on social compliance or similarity to peers or academic results? No. No, we do not.

Will we pay a giant price for choosing this path? Who knows.

All we know right now, is it seems like a better choice than drug induced bilious vomiting, uncontrollable diarrhoea, cognitive loss, stillness, compliance... oh wait.... we've gone from safety into some other, less formed territory.

It's the conceptual quicksand of difference, really. What are we wanting from our kids? If they can't naturally be like everyone else, should we force the issue? Is it our right, and is it the desired outcome anyway?

(I always get a touch of the early Carrie Bradshaws when I write something like that... then I realise what I'm writing about and whack myself across the knuckles like the nuns used to... it feels like an odd kind of balancing act)

Back on deck...

I do not envy anyone in this game. No-one's choices are easy. Ours have not been, even though (to us) they seem like the natural choices.

If Billy has an infection that we're clear he can't fight himself, we take the drugs carefully. If his diet is lacking in something he needs, we take the supplement carefully. If there's a challenge to him achieving something, we change our lifestyle to make it possible.

We know it's not this easy for everyone, and for that we are grateful. We know it probably won't remain this easy for Billy's whole life, and because of that, we remain massively cautious.

These strategies definitely don't make the challenges magically disappear, as much as we sometimes wish they would. But they do teach us more about what those challenges mean, and they do give us space to consider our next step.They allow us to live this journey a more examined, aware, considered manner.

Oddly, in an unexpected turn, this whole process has made us happier too. It's made us healthier too. It has shown us that sickness, otherness, difference from the pack is not a bad thing. It's just a thing. Some days it's a really, really good thing.

I wonder if Dr Poo will give a crap?


Anonymous said...

Please check out and google rescue angels. Both my boys are off spectrum now. One doing HSC will go into IT the other is doing well in year 7 just toped his maths class. Both are very social. We started with inflamation in the gut, no speach, etc etc. it was a long journey but well worth it. The book 'Children with Starving Brains' helped to understand what the heck was going on. The Brai Gut connection is another good book at explaining how your child,s gut ie poo effect behaviour. Its all about healing the gut.

Good luck on your journey.

Anonymous said...

My son has Pervasive Developmental Disorder-Not Otherwise Specified A-Typical Autism (PDD-NOS) I read some of your artical from the Women's Day (part shown on website) and your blog from 26 August. I too have resisted the urge to medicate my son. Rather than keep him still at school we let him come home and "bounce" as much as he likes. We placed the trampoline under a floodlight to enable him to keep moving for longer after school. I am not sure which end of the Spectrum Billy has been placed, however, have you looked at the weighted blankets. With some of the children we know, having the weighted blanket across their laps "calms" them and they don't have the "need" to move. As I have witnessed with our Son, some of his "abnormal" actions are merely actions to gain the extra stimulation that he needs to have an experience we would call "normal". For example to enjoy some foods he requires the addition of chilli sauce, to gain the same pleasure from the food we would have without the chilli sauce, its like he needs the extra stimulation to break through the fog. I have learnt to look at the why our Son does things then ask myself what is it he is trying to "feel". Our Son wasn't diagnosed until he was 5 years old. He has transformed from a child who at one was speaking and interacted, to a non speaking solitary figure, to an articulate, history buff with numerous friends. We still do cartwheels when he achieves even the smallest milestone. Keep believing in Billy and Yourself.

Lisa Rayner said...

Fabulous writing about an inspired life. You are all lucky to have each other.

I have no personal experience with autism, but I do have experience with a serious illness of my son and the rollercoaster of dealing with the medical profession - the hardest thing being getting them to listen to my views and take them seriously. It's a huge job in itself taking responsibility for your childs healthcare and being a very active participant and contributor to everything that happens. You know it's paying off when your child is getting happier and you are feeling less tired.

Good luck in your journey, your attitude is just bloody great and the way you express it all on the page is just fantastic.

Anonymous said...

Don't eat McDonalds or KFC!