Wednesday, August 29, 2012

Autism and the incuriosity of doctors

We've been running around chasing our tails with our girl's epilepsy (which began around 18 months ago and has been getting steadily worse). Major seizures at school have been the biggest problem, and there seems to be a solid connection to Milli's breath-holding. Having booked a paediatric neurologist appointment (the earliest we could get was October), we've been holding our breaths ourselves. Every day she goes to school I have to be sure to keep my mobile phone switched on. There's no real break when any minute could mean a phone call and a pick-up, or perhaps hospital visit.

Seizure frequency was unchanged by Tegretol, though symptoms seemed lessened. About six weeks ago she was fitting every few days.

Then we realised we hadn't been giving her the fish oil and vitamin tonic in some time. I don't know why this fell by the wayside, except that it seemed she was eating well enough (finally) to come off it. The seizure activity began quite some time after our other interventions trailed off, so we didn't connect the withdrawal of supplements with the fitting.

However recently we began fish oil and Hi-Vita (a general mineral/vitamin tonic) once again, and for two weeks there was no fitting at all. This seemed a big change after so many weeks of increasing seizure activity. She had one fit at school (which happened on the day I forgot her fish oil and vitamin tonic dose); these things may be wholly unrelated. However once again it seems she's relating better even outside the question of epilepsy. She's now been back on the fish oil and vitamin mix for about four weeks, and has only had two obvious seizures.

Syringing tonics as well as medication into our girl is no joke; it's difficult and results in mess, and increasingly she knows how to pretend to accept it while moments later spitting it all back. This makes her laugh (or at least it did this morning) but I feel the results may well be worth it.

Now for the funny part: last paediatric visit, my partner and I mentioned that our girl's seizures had markedly lessened, and that this was perhaps due to the fish oil and mineral tonic we were giving. While we weren't claiming a link we were interested to hear if he had any thoughts on the issue, in case this change might hint at whatever may be going on with our girl's seizures in particular—if there's a possible nutritional problem, for instance. The doctor blinked faintly and continued with his discussion of medication and dose.

There's every reason why doctors should be suspicious of anecdotal evidence in general, but with autism it seems the only things that work are anecdotal. As a parent you're either stuck in a useless medical paradigm or you're off-grid. It's unfortunate that medical incuriosity seems determined to keep things this way.

Saturday, August 18, 2012

Facebook and the anti-AVN

A few days ago I was looking at my facebook page when I noticed an ad in the right-hand sidebar for a Facebook entity called 'Stop the Australian (Anti)Vaccination Network, a site apparently set up to oppose the Australian Vaccination Network (AVN). (All links are below this post.)

Now I've never actually browsed the AVN (Australian Vaccination Network) page before today, or had any interactions there beyond once 'liking' a post another of my friends had liked (from memory it was something innocuous like a call for better information on adverse reactions, or something like that). I'm not an AVN robot. I've simply been through something that exposes possible holes in our government/corporate chain of statements about autism (what it is, what may cause it and what may help).

Indeed the first time I'd ever looked at an AVN video was when I navigated to Stop the A/AVN! My response to that video was that the woman speaking sounded quite fair and reasonable.

Stupidly, I began to talk on the Stop the A/AVN page about my girl's nightmare, her chelation, the astonishing results (a swallowing turnaround in 2 days; a lopsidedness turnaround in 2 weeks; myriad other turnarounds). I say 'stupidly' because it resulted in a mostly unpleasant discussion and at one point I was effectively called 'friggin' dumb'. One of my comments (questioning whether the page was a Big Pharma troll site) was reported to Facebook, and the entire discussion was swiftly removed.

What I didn't realise is that I'd joined an ongoing war. I was just saying what happened, sharing information I thought others might find interesting. I can't help feeling my discussion was removed from the Stop the A/AVN site because it made sense!

Here is the AVN's Facebook page:

Australian Vaccination Network

Here are a few of the Facebook pages linked to on Stop the A/AVN that run the same or similar campaigns:

Informed Parents of Vaccinated Children

The Real Australian Vaccination Network

Stop the Australian (Anti)Vaccination Network