What the hell are we doing?

My child is really great. He’s one of those people that people respond to. He’s got a genuinely beautiful spirit.

I promise I’m not exaggerating about this. Ask anyone who has met him.

He’s been whacked by life’s medical wet fish way too many times. First with dodgily constructed ears, then with ‘autism’ and all it brings, then with Transverse Myeitis, then with gastro-intestinal issues and now with epilepsy.

We’ve avoided much medication in his life, which is handy because he reacts really badly to most of it. He had extreme vaccine reactions, he has vomited bile in response to every GI medication, his system flared wildly with every antibiotic. The most common response we get from doctors was, ‘I’ve never seen that before’ when we bring our kid back sicker after the medication.

He did have a really positive response to prednisone when he had Transverse Myelitis. It saved his life (so, quite positive) and also made his tiny 3 year old autistic body speak in full sentences for the first time ever. Sadly, it also (as predicted) blew out his liver and kidney function and so had to be weaned carefully.

Exactly a year ago, though, everything we knew changed.

Billy had what was described by his GP as a ‘mental breakdown’ (tics, OCD, anxiety) and which quickly became tonic clonic seizures.

After his first seizure, we watched and waited. After his second, we hoped we were just unlucky. When his third and fourth came in quick succession, paralyzed him down one side and made him vomit uncontrollably, we had to give in and medicate.

Since then, his body has been struggling.

The first drug, Epilim (or depakote, for the Americans) made him rapidly gain weight, lose control of his bladder intermittently, vomit in the early afternoon and develop OCD. Also, it didn’t stop the seizures.

The second, Keppra, stripped weight off him and brought on truly hateful psychosis. And it failed to stop the seizures too.

We are too frightened to try a third, so we are going backwards. First back to Epilim, and then, we will take tentative steps towards the Ketogenic Diet in some form.

Why am I telling you all of this?

I’m telling you this because every day, I pop pills out of packets and force my child to take them.

He takes them, because he’s a lovely and compliant child who doesn’t want to have seizures, but do you want to know what else he does?

Well, for some part of every day, he begs for us to ‘get his thoughts out of his head.’ He threatens to hurt himself, us or his dog. He screams a high pitched scream in response to the simplest challenge (the internet is frozen, Daddy is walking home instead of driving, dinner will be different tonight). He forces himself through self devised repetitive physical rituals to clear his mind and keep himself safe.

‘Meh, that’s autism’, you may be saying. ‘Lots of autistic kids do those things.’

Funny you should say that because his doctors try to say similar things.

But here’s the thing.

He did not, ever, do those things. Not before he was medicated.

And wah wah, poor us, get some perspective… whatever. But the reality is, the medication we are giving our child every day, the medication that his doctors insist is necessary to keep him safe, is sending him crazy.

He drops out of enjoyable activity to perform a set of tics and postures a hundred times a day. He is obsessed with all of us cleaning our hands. When his dog, who is his best friend, barks (which is rare, but it happens) he punches him so hard the dog yelps. These are all new and horrible behaviours.

And yet, we give him the medication.

We have plans to try to transition away, but those plans take time and medical supervision (and mega money and potentially almost total revision of our awesome whole food journey, but that’s a whole other post).

The point is, we give him the medication. People, we trust, with training we don’t have, tell us we must. And so we do. Despite the fact that it is taking him away from us every day, and worse, it is doing things to his body that make him hate himself. That can’t be ‘healthy’.

Seriously? Is there not something better than this?

I look around and I see so many of Billy’s peers, heavily heavily medicated. I see them with pale skin, dark eyes, way more or less weight that they should be carrying, restricted diets, school crises, failing energy, diminishing skills, failing bodies and maybe, if they are lucky some kind of an improvement in function. For many, there’s not even that.

And yet, we keep giving them the medication.

Why?

Well, we’re scared. In this house, we’re scared of seizures. In other houses, it’s that or fear of outbursts, suicidal thoughts, obsessions, violence, non-compliance, a lack of focus… all sorts of perfectly legit fears.

Balanced by another set of fears. That we are poisoning our kids. That we are doing harm instead of good. That something is very very very wrong with this picture. This is NOT what we were told would happen when the ‘a’ word was first uttered.

If you haven’t had to step into the world of medication, can I suggest you try like the blazes not to? Change your lifestyle, change your diet, change any possible thing you can before you get on the roundabout that has no off button.

It might work for a while, it might seem right, but we do not know the consequences long term. Take that gem of wisdom from those of us who see the consequences immediately and still have no choice but to keep medicating.

There are no reliable long term studies on so many medications that are routinely given to children. There are so many massive side effects that are chalked up to bad luck, mystery or collateral damage. Despite the assurances of lovely doctors who want solutions as much as we do, Billy’s medications have not proven to be either effective or safe. The drug responses the doctors raise a crinkled eyebrow about, are genuinely terrifying to us. More importantly, they are terrifying to Billy.

And yet, we have to give them to him.

If I have learned anything in the last 12 months, it’s that nothing… not one thing, is more important than health. Inside and out, from food to function, we should be keeping our child healthy. That should be our job as his parents. Yet, every day, we make it worse, not better.

This is not made any easier by the fact that in a societal sense, the health bar is incredibly low. As a (privileged) population, we’re generally eating poorly, choosing badly and living slowly. Add to that, a kid with a swag of diagnoses and a bunch of ‘mysterious’ reactions to everyday substances and expectations are even lower.

What the doctors call health (still breathing, not bleeding from an artery, walking independently, communicating effectively) is laudable, but it’s not what our kid was, and it is certainly not what we hope he could be.

He is stuck between a rock (his health) and a hard place (modern medicine).

The only way out seems to for us to throw around a LOT of money and hope some of it lands somewhere useful. We’re focusing on diet, we’re educating at home, we’re investigating gene function, we’re testing every fluid we can. We are finding out useful things, incrementally, but it’s incredibly slow, incredibly time consuming and incredibly expensive.

At the end of the day, on so many levels, we find ourselves wondering what the hell we are doing.

This should not be as good as it gets for children in 2013. It really really shouldn’t.

As a postscript, I want to share this family’s story about their journey to discover more about leukodystrophy – Mission Massimo.

I am at once floored, devastated and unbelievably inspired by their story. They articulate so clearly what so many parents I know feel. At its base, an incredulous sense that not knowing ‘why’ just can’t be good enough.

I am reminded that we live in a time when many autism parents are slandered, doubted and questioned because they do not accept their children should be mysteriously disabled. When you look at it like that, I find it hard to believe that anyone could not be yelling from the rooftops that someone has to do something.

We will do something. We will try, at the very least. And we will speak loudly to anyone who will listen as we do.

Actually we’ll speak loudly until people listen. If they don’t we have a substantial collection of wet fish with which to flog them into consciousness.