Hunting for a miracle
A child has died after having controversial treatment for autism. Sara Pennington on her own search for a cure
Wednesday August 31, 2005
The Guardian
I have a confession. Some years ago I bought a tube of little pills from a homeopath that she'd manufactured from my son's own faeces. I can't believe I was persuaded to hand over good money for this product. More to the point, I wonder what must have been going through my mind that I even entertained the idea of feeding my sick child his own excrement, albeit in a very diluted form - even though, in the end, I never did suppress my rational scepticism enough to give it to him.
So what drove me to poo pills? It's because my eight-year-old son Thomas has autism. As with many other children who have this perplexing disorder, mainstream medicine had next to nothing to offer him.
When Thomas was in physical distress and crying out at night in pain my GP - in answer to my demands to find out what was really wrong - could only come up with the most basic urine test using a dipstick. To be seen at a specialist hospital clinic for Thomas's gut problems was a two-year wait. So maybe I got desperate and lost sight of my better judgment. I started to search for alternatives. I admit I may have been vulnerable at times to people peddling a bit of hope.
Last week a five-year-old child with autism, Abubakar Tariq Nadama, died after travelling from Britain to the US to undergo controversial treatments at a Pennsylvania clinic, meant to remove certain metals from his system, such as mercury and lead.
We have no idea if the child's death was directly caused by this procedure, chelation, which was reported to have involved injections of ethylene diamine tetra-acetic acid, a substance said to help flush out heavy metals.
But we do know that there is a growing phenomenon among parents of rejecting the conventional belief that autism is necessarily a genetic disorder for which there is no known cure. Generation Rescue, a parent-led group in the US, goes so far as to claim autism is mercury poisoning that has been wrongly diagnosed. They link its origins to mercury-containing preservatives once commonly used in childhood vaccines. By removing mercury from the body, a cure for autism is possible, the group believes.
Testimonials from parents describe how their children started behaving "normally" after chelation - a process that can take up to two years. But critics say that the link to mercury toxicity is unproven, chelation is too risky and that autism cannot be cured. The worth of chelation as a treatment for children with autism has yet to be subjected to the most fundamental standard of proof: stringent scientific testing through the medium of reputable clinical trials.
In my son's case, I feel hopes of a cure for his autism are but a dream. But that he has an underlying medical condition making his autism worse, I have little doubt. Equally, there must be some treatment that can improve his symptoms, even if the potentially high stakes make chelation something I could not subscribe to for him.
After all, he was fine as a baby and there was nothing wrong with his eye contact until he began to disintegrate at 17 months of age losing his speech and ability to learn. His sleeplessness, screaming and serious stomach problems were too easily dismissed as part and part parcel of his autistic condition, it seemed to me.
In my desperation for some sort of treatment, I reckon I must have forked out thousands over the years on a fair amount of quackery, the odd snake-oil salesman and heaps of horse-pill sized nutritional supplements that largely remain untouched in their boxes. I've shipped off samples of urine and faeces via courier to the US for analysis, and dragged my son in to see more alternative practitioners wielding pendulums, crystals and chakra charts than I can recall.
Other than liberating me of some hard earned cash, has all this achieved much? Most probably not. But in honesty, it's hard to tell if something is helping: living with such a kid is a roller coaster ride, so if you want enough to believe that something is working, then you can probably see it.
We need hard evidence of what works for these children. Of course, it is not an option to conduct double-blind clinical trials for every whacky cure. But trials of a selection of the better reasoned options should be supported - the gluten- and dairy-free diet, anti-fungal medication for gut problems, and vitamin and mineral supplements such as B6, zinc and magnesium.
I'm also conscious that, in the absence of firm research, any pill or potion I give to my child is largely experimental. So is this all too risky? In my son's case, it's unlikely: he shares the autistic trait of being a very fussy eater. So soil-derived probiotics resembling garden compost or blue-green algae soon end up in the dustbin.
I was handed pots of substances labelled "Sano-Gastril", "L-Arginine"and "N-Acetyl-L-Cysteine" after consulting one of a chain of nutritionists set up specially to treat autistic children. These supplements still have the labels "sealed for your protection" intact around each lid. I needed more convincing that the analysis of one urine sample done in the US could really tell so much about the defects in my son's "metabolic pathways" to ensure that giving him these would definitely help.
Another multivitamin compound formulated for autistic children, known as Super-Nu-Thera, listed its daily dose as containing 25mg of vitamin B6, though the Royal Phamaceutical Society of Great Britain has expressed reservations about any B6 preparation containing more than a 10mg daily dose. According to the British National Formulary, there are concerns about possible toxicity resulting from long-term use.
Yet without these products and procedures my son now radiates better health and is calmer. His speech may still be very limited and his behaviour considered bizarre, but he enjoys life and has no sign of the eczema that blighted him in the past. The chance to go to a school that gives him one-to-one behaviour therapy and teaches him to speak has obviously helped.
There are some "treatments" that have been worth the trouble, and they are the ones that have come from advice that has cost least. The gluten and dairy-free diet recommended by a parents' group, Allergy Induced Autism, does seem to have been beneficial in Thomas's case, calming him down and stopping his diarrhoea. That he showed up positive in proper tests for coeliac disease, an allergy to gluten, demonstrated that there was a medical reason to restrict what he eats.
It also helps to talk things through with an NHS consultant paediatrician who doesn't think what you are trying do for your child is totally crackpot. The support of a specialist (consulted on a private basis but at a modest sum), who has a particular interest in gut problems and autism, has encouraged my more sensible treatment choices.
I now give Thomas individual supplements at reasonable doses for his vitamin and mineral deficiencies as identified by blood tests done at a reputable laboratory. There's nothing too outlandish about that.
From my experience, I would say it is time for the NHS to develop well researched treatment protocols for autistic children, including provision of blood testing for some potential deficiencies. It is when the health system seems to close its doors for puzzling conditions such as autism that desperate parents are pushed to the medical margins in their search for "cures".