Monday, January 24, 2011

ADHD figures up to one in ten... Is it my imagination or is that high?

Yesterday's Sydney Morning Herald (paper edition) carried a front page story titled: 'Males fuel rise of the Ritalin generation' by Amy Corderoy. (See SMH, Fairfax, Monday January 24, 2011, page 1-2.)

The article's Dr Scott, who studied Ritilin use, was quoted as saying: 'About five to 10 percent of the population has ADHD'. He went on to note that girls were often undiagnosed (presumably because they may have the passive sort, often called ADD, which can easily be overlooked as daydreaming, forgetfulness and so forth).

The ten percent diagnostic figure seems to match my limited personal experience teaching in schools. If the department responsible won't give out autism prevalence statistics because of privacy concerns, the education institutions are where its prevalence is arguably most obvious. In most of the handful of classes I taught in, the teachers seemed at a loss to account for the high numbers of children with attention issues. I'm not talking about children who fidget and daydream. These were children who snatched others' books, ran about the room, dived under desks covering their ears against unpleasant noises, failed to form letters properly, ignored instructions, interrupted, disrupted others and seldom completed tasks no matter how rigorously they were brought to attention.

ADHD is usually considered as separate to ASD (or autism spectrum disorders). However Diane Kennedy argues convincingly that ADHD is an ASD (see The ADHD Autism Connectionhttp://www.amazon.co.uk/ADHD-Autism-Connection-Diagnoses-Effective-Treatments/dp/1578564980), and treatments such as the gluten/casein free diet and even chelation have often been described as working for both. The book I used to chelate my girl described the disorders as linked, and also recommended similar treatments for both (see Children with Starving Brains http://www.amazon.com/gp/product/images/188364710X/ref=dp_image_0?ie=UTF8&n=283155&s=books).

One in ten is a terrifying figure if true. Of course, even more terrifying is the prospect that it might be increasing in prevalence. Unfortunately given the absence of a centralised ASD/ADHD counting system (our government leaves it to the States to do their own individual work), nobody is in an ideal position to either notice or recognise a trend.

If you're not already worried, maybe it's time you went into a schoolroom.

Meanwhile, something causes autism.

Friday, January 14, 2011

Rett syndrome: you're on your own until the cops come...

One of the most distressing news items I've read in a while.
http://www.abc.net.au/news/stories/2011/01/14/3112932.htm

The mother failed to resuscitate her drowned girl. Having spoken of euthanasia and murder-suicide, she now finds herself being investigated by the coroner to ascertain whether murder charges should be laid.

Rett girls have such severe swallowing problems that they often inhale liquids (and hence literally nearly drown with every meal). They lose purposeful hand function, communication, speech and often walking ability. And worst of all is the constant screaming as the anorexic Rett girl's brain continues to fail. Screaming doesn't mean only confusion or unhappiness. It surely means unbearable pain.

What kind of parent would *not* consider whether their child would be better off dead than live a life with Rett syndrome? At age 2, the worst is yet to come. Given the lack of help and resources in those early years (with the huge queues for help for all the autism spectrum disorders, Rett is just another waiting list entry), thoughts of euthanasia must come to everyone. The difference with this woman is that she spoke these thoughts aloud.

And so did I. To my partner, not to DOCS. Naturally enough, my partner reacted with horror and disgust. But he missed the point.

I didn't speak these thoughts aloud because I intended to act on them. In fact, I expressed them for the opposite reason: to make sure I *didn't*. Euthanasia was an impossible solution to an unbearable problem. Expressing it was simply expressing the impossibility of the predicament we and our girl were in.

It's a weird world if you're a carer. We've realised the hard way that what we do on a daily basis is virtually ignored by society (or even actively frowned on, such as when our child makes strange noises in public), yet if we make one slip, we'll know from cases like this one that we'll be studied forensically.

Meanwhile, looking back I can say that death couldn't possibly have been more painful for my girl than what she went through, and she went through it for many months. With death by drowning, it only happens once. With Rett girls' swallowing difficulties, drowning happens, or nearly happens, at every meal, to the point where they simply refuse to eat or drink at all.

What kind of world would ask a mother to resuscitate a child to that kind of existence? Especially when conventional medicine has nothing to give in terms of treatment?

I don't know what I'd have done if my girl had fallen into the pool and drowned. If it happened today, I'd dive right in and give her mouth-to-mouth, no matter what. She enjoys being alive; she loves us; she's not in pain. Looking after her, however difficult, can be a joy. But if it had happened when she was going through her eighteen month long period of pain, anorexia, screaming, night-fits, head-banging, hand-banging, not drinking at all?

No, I can't answer that.

All I know is something causes autism. And given that not all Rett girls show the gene associated with it, and that Rett syndrome (like all the autisms) appears to be increasing from one in 15,000 to being the leading cause of severe intellectual disability in girls, I think it's fair to ask whether something similar contributes to Rett syndrome?

Addition: I just wanted to add that one of the hardest things with our girl has been to keep her away from water. She loves water; she'll do anything to get to it, and doesn't recognise the danger if it's deep. All it takes is one carelessly closed door...

In fact, any danger-zone seems an instant drawcard to her! I once had to rush out in my night-dress because my son admitted that he'd let her outside twenty minutes earlier... There she was, being carried around from door to door by a distressed-looking ute driver. She'd been found running circles on the highway!

Monday, January 10, 2011

'Junk science' saved my girl.

I've just been told second-hand by a journalist that research into a possible autism-vaccine link is 'junk science'.


In that case I have to thank junk science for saving my girl.


If I hadn't met a Mindd Foundation affiliate at a function, and heard her flat statement (amazing to me at the time) that 'vaccinal mercury causes autism', I would never have tried to chelate my anorexic and starving two year old girl using alpha lipoic acid.


Indeed, if Australian journalists, commentators, medical experts, nursing staff, scientists and their families had their preferences, I wouldn't be allowed to speak about this at all.


Junk science brought back my girl's swallowing reflex. After she had gone through 18 months of being unable to swallow properly, her recovery from anorexia took two days. It doesn't matter to me whether the science is junk; my daughter is here.


Even now, I don't blame vaccines for her deterioration. However given the seemingly obvious heavy metal involvement (or rather her improvement after its removal), I do think there are reasons to be suspicious of mercury, including but not limited to vaccinal mercury. And given the astonishingly bad science of the Danish Thimerosal study, it's strange to see so many commentators so het up about Dr Wakefield.

Meanwhile I'd rather junk science than junk journalism.

Something causes autism.

Saturday, January 8, 2011

The Wakefield Witch-hunt...

Yes, it's that news story about poor Dr Wakefield's research into the MMR, which is now being persecuted as 'fraud'.

What I can't understand is why the Danish study that first exonerated Thimerosal isn't being investigated.

Part-way through the study the parameters were altered to include more autism cases, and this seems to have resulted in an apparent increase in autism after mercury (Thimerosal) was withdrawn (thus 'proving' Thimerosal was safe).

In my view the Danish study makes Wakefield look positively saintly.

In harping on about the MMR-Wakefield issue, I can't help suspecting the medical research bodies (and their various forum outreach workers) are strategically hoping to both discredit independent vaccine research and deflect interest from vaccines that contain mercury, such as the newborn Hep B jab. At the same time, even the MMR case won't be closed until researchers study whether MMR aluminium acts as an exacerbator to previously acquired mercury.

Whatever Dr Wakefield's faults, what's needed is more independent research, not less.

But that would mean a shift in the system so that those who make and distribute (and profit from) products aren't also the ones who test them for safety...

Something causes autism.