Monday, May 14, 2012

Greetings from Poo Purgatory...

I am known for my tales from Poo Hell.

We have been citizens there since Billy had Transverse Myelitis when he was three and a half, and had a temporary workers visa for maybe a year before that.

In Poo Hell, we have our own language. We chat about constipation, megacolon, motility, Bristol Stool Chart, PPI, PEG 3350, frequency, elimination,  diarrhoea, all sorts of --cols and laxs , oh my lord what's that, I don't remember him eating that, no doctor I don't agree... you get the idea.

Well, I don't want to jinx it and speak too soon, but I believe we may finally be beginning a kind of a holiday in Poo Purgatory.

This year has been a slow, gentle journey to health for all of us, but particularly Billy. After the seizures began, we figured we had to work as hard as we could to get Billy as healthy as we could get him. We had hidden behind the 'but he's a picky eater' thing for too long. Yes, he is a picky eater. So, we decided to get good in, in other ways.

We started juicing fruit and vegetables and making smoothies. We took out all dairy, and reduced gluten (it's a long story). We started high grade probiotics, b12 and ASD formulated multivitamin powder. We hid the supplements in the juice and smoothies, and in fruit puree. We added super foods (goji berry, raw cacao, spirulina, kale, spinach, flax seeds, hemp seeds and coconut, flax and hemp oil), again hidden in smoothies. We started by putting the smoothies in the same room as him (and it was a battle), progressed through looking at them, to licking drops of them to (now) drinking 100-200 mls a day.

With the probiotics, we began with teeny tiny amounts (literally a micro-pinch), and now we are up to a full dose (of 45 billion CFUs) mixed into spoonfuls of fruit. A couple of weeks ago, we added Lactoferrin SB, which seems to have been a teeny pre-biotic silver bullet.

We retain the doctor-recommended Movicol and last used it two weeks ago. I'm not averse to using it when needs dictate. It's hard to maintain the volume of superfood, on days when we are busy or he is not 100%.

We have a bunch of further diet aims. Take out the gluten, get more alkaline, eat more raw food, add true fermented food, increase the amount of conscious good food choices he makes... the list is truly endless. But here's the crazy thing.

We were in a place where we thought nothing was possible. We were convinced he was just destined to be unwell, that his gut was always going to be bad, that his diet was unfixable, and that we risked starving him if we tried to make it better.

I want to be really clear about this next point.

We were stupid. We were blindingly unbelievably mind-bogglingly wrong.

The more we tried, the more he tried. The more he tried, the braver he got. The more his gut heals, the more he understands the power of good eating.

It's not perfect. He still begs for crap, and sometimes we give in. He still throws himself on the ground and bargains for the 'last time' sip or spoonful of superfood. But...

Every day, without fail and without sacrifice to the great god of underpants, he goes to the toilet (almost completely unprompted) and evacuates his bowel (how disgusting does that sound?) completely.

The bonus Mummy upside is, whatever Billy gets, I get. Juice, smoothie, probiotic... I'm taking it too. I take a grown up vitamin, where he has his ASD one. We have overhauled our diet, rarely missing out on the daily recommended amount of fruits and vegetables. We eat organic, we drink buckets of water each day, we exercise.

We all still eat the odd chip, the odd bit of chocolate and the grown ups have the odd glass of alcohol. We are not monks. We are just trying the best we can. And it is having an effect.

It could all turn to custard, or constipation, in the blink of an eye, but a tiny gateway has opened so we could leave Poo Hell and hang out somewhere less stressful. It feels easier for the first time in five odd years.

This whole game makes me think about autism and health, about what we know and what we don't know. Because really, it strikes me every day, that we don't know much at all.

That whole 'first do no harm' dictum is so often an excuse for doctors to first do no good, either.

I have no idea what I'm doing, and I find that ultimately scary as hell. I listen to all the doctors, I read everything I can, and I take leaps of practical faith when I can. I'm sure I could be braver, I'm sure I could be more cautious too. When I am not sure of, is that the medical fraternity is committed to making any positive change in the lives of autistic people.

The vaccine safety debate is murked up with money and crossed purposes. Adverse reactions do happen, and the doctors know it. We had to sign a lot of papers acknowledging that reality when Billy had Transverse Myelitis. We are not the only ones.

And it's not just vaccinations. It's autistic health more broadly.

As the group of families in The Autism Experience ages, more and more are being diagnosed with serious illness - chronic GI issues, auto-immune disorders, lifelong serious mental health conditions, mitochondrial disorders, metabolic disorders... in many of our kids, health is a bigger concern than the autism that brought us together. Kids are slipping in school, their motor skills are fading, their guts are struggling, they are sick with stuff the doctors can't pin down - more and more and more.

It makes me wonder why the medical fraternity are not researching the immune systems of people with autism. I wonder why they are not profiling the immune systems of people who have survived adverse reactions to vaccines, and see if they can find a pattern, so maybe we could predict (and lessen) adverse reactions before vaccination happens. I wonder why they are not looking at the similarities and differences between autistic subtypes. We've got a whole wide world of controls out there... a world wide willing cohort of parents and siblings for genetic profiling... a world that needs to work out how it's going to survive an ever increasing social and medical services load.

It seems complex. It's all too hard to sort out and sift through. I know that feeling.

But as I lean nonchalantly (and gingerly) against the Poo Gateway, I think... come on fellas. Haul your crap together and do something about it. We are trying to. Being the sort of person I am, I would quite like a set of reliable guidelines. I'd like to feel like you are with me, not against me. I'd like to feel a little less anxious (and eventually enraged) every time I take my son to a doctor.

Contrary to the image the media likes to portray, most autism parents, especially those with obviously sick children, want nothing more than... um... well children. Our passion becomes anger so easily because we are frightened for our children. There is nothing more confronting than realising the person who is responsible for healing your child, has absolutely no idea what they are dealing with. Actually there is, and that is not knowing any better yourself.

I am Billy's Mum. I am the one who makes the bad stuff go away. I am the one who makes it all OK. That's a mummy's job, with her hands and her heart. Some days, especially the days we are stuck in hospital, I suck at that job. I am useless.

Today, though, I feel like we have earned a tiny win. It is one of about a bazillion wins that are necessary in his lifetime, but it is one. It is partially won. We kind of know, a sort of something that might just work for us.

If there is any chance that the doctors and researchers could catch up with us parents, we'd be really grateful. Actually, if they could join us on the same road, in the same race... that would be awesome.  We have found out a lot, but it could use some validating. You have found out a lot, but it could use some humanity.

Or some poo. We have lots of poo. Now.


The Bright Side of Life said...

Fantastic post. You have me all fired up and ready to give smoothies (and everything else you are doing) a bash! I am a bit scared though, as my boy is a stubborn kid... I have been trying for years to get him to try something, anything... new!

Deenie said...

Hi. I always read but rarely (or never before) comment. Today I had to say that I really and truly hope that you have found something that works for Billy. Something lasting. And by God yes, I agree about the doctors. Good luck!