Angry Doctor

Tuesday, August 12, 2008

Loss

Well you may never be or have a husband
You may never have or hold a child
You will learn to lose everything
We are temporary arrangements


- Alanis Morissette, "No Pressure over
Cappucinno"

angry doc is in pain.

All doctors should be in pain - it gives them that concerned look.

But seriously, there is nothing like personal pain to put one in a sympathetic mood, and it is in this mood that angry doc would like to look at this article:


(emphasis mine)

Autism 'cures': Helpful or harmful?
Certain studies show alternative therapies may be risky, but some parents say treatments have helped their kids
By Radha Basu, Senior Correspondent



OFTEN, in the dead of night, six-year-old John would wake up squealing. During the day, the boy, who has autism, would be lethargic and surly.

Suspicious that his alternative therapy sessions were hurting rather than healing him, his mother, Mrs Sally Lim (names changed), put a stop to it.

'I saw no improvement in his condition, and there were rumblings on the Internet that it was not safe,' says the 38-year-old project manager in a bank.

Three times a day for six months, she would rub a medicated ointment on John's body as part of a therapy known as 'chelation'.

Based upon the medically disputed theory that mercury in vaccines causes autism, the therapy uses drugs to 'chelate' or bind with heavy metals in the blood, which are then purged from the body in urine.

It is just one of a bewildering array of more than 20 so-called alternative treatments pitched at anxious parents of autistic children in Singapore.

These range from the mundane - such as homeopathy and vitamin treatments - to the bizarre, including one that puts children in high-pressure oxygen chambers, and another that is supposed to map their brainwaves.

With mainstream medicine promising no cure, many parents wade through a sea of expensive therapies in the desperate hope of finding something to make their children well.

Most of the 15 parents interviewed said they had tried at least three or four different treatments, chalking up large bills in the process.

One parent spent $28,000 hoping for a miracle that never happened.

Biomedical therapy, which involves vitamins, supplements and wheat- and milk-free diets, for example, can be continued for years, and costs around $350 each month. Parents have been known to spend up to $10,000 a year on the treatment, plus frequent blood, hair and urine tests.

Transdermal chelation - which Mrs Lim chose for John - requires an ointment to be massaged into the skin. Each tube of ointment costs $100 to $300. The treatment also requires kidney and liver function tests as often as once a month. Each test costs about $270.

The trouble is that many of these treatments are clinically unproven and administered by people who are not medically trained. And the results are mixed.

In the United States, scientists have dubbed chelation a 'voodoo' treatment. A government-funded trial to test DMSA, the chelation drug Mrs Lim used on John, has been suspended because it was deemed too dangerous.

The problem is that the drugs are known to remove essential minerals such as calcium and iron, and there have been reports of at least one botched-up chelation-related death in the US.

A recent study on rodents there showed that DMSA, while effective in overcoming lead poisoning, caused 'lasting emotional and cognitive problems'.

But such studies have been met with vociferous protests from parents and practitioners in Singapore, who claim chelation and other therapies have helped autistic children.

Therapists promoting the various treatments are known to publicise cases of spectacular success - often of their own children.

Seduced by such anecdotes, many parents drift from therapy to therapy, only to learn the hard way that the line between miracle and misery is thin.

Ms Jacqueline Ang, 38, who has two children with autism and runs an online support group for parents, says the devastation parents face at diagnosis is difficult for others to understand.

'How can you live with the fact that your child will never be cured? So we grab whatever little we get by way of hope,' she says.

Her support group has about 560 parent members. 'Easily 80 per cent have tried some form of alternative treatment,' she says.

To help parents steer clear of dangerous, expensive and ineffective treatments, a 19-member committee of paediatricians and other health professionals is now scrutinising overseas research on the efficacy of the various therapies.

MP Denise Phua, who has a 13-year-old son with autism and runs the Autism Resource Centre, sees the new Ministry of Health-supported initiative as timely.

'If aesthetic treatments can be regulated, there is an even greater need to regulate intrusive autism treatments such as chelation, which are being administered by practitioners who are not medically trained,' she says.

Paediatrician Lim Sok Bee, who heads the committee, says the biggest risk comes from invasive therapies in which a child is made to take pills, syrups or even injections, or is denied food such as milk and wheat, which are essential for growth.

She warns: 'Parents should be aware that if not properly monitored, the child could end up being malnourished - this, in turn, may cause convulsions.'

Housewife Melinda Chew (name changed) knows exactly how frightening this can be. In 2006, she rushed her son Jeremy, then two, to hospital after he convulsed with fits and foamed at the mouth.

Moments earlier, the housewife had fed her son some milk, which a nutritionist had banned from his diet as part of biomedical therapy to 'treat' his autism.

The diet-and-supplement regime caused the boy to lose a lot of weight. 'He used to love milk, so I thought I would ditch the diet and give him some milk since he had not been eating much for days,' says Mrs Chew.

Doctors at the hospital were able to revive Jeremy. But her doubts lingered. 'If I had not started the diet, this may not have happened at all.'

She stopped the therapy. Jeremy is now back to drinking milk and has regained the weight he lost.

But as a mother, she says she cannot give up hope. Early last year, she put him on two other therapies - a form of Japanese energy healing and homeopathy.

This time, she says the results are 'spectacular'.

Little Jeremy talks more, can colour and look his mother in the eye.

'I am so happy,' Mrs Chew says, a slow smile spreading across her face. 'Things are finally looking up.'

For now, at least.


The article is more critical of alternative medicine than angry doc had expected of the Straits Times, so he will not dwell on the scientific aspects of the issue.

What angry doc is interested in discussing is what drives the parents to seek unconventional, implausible, and potentially dangerous 'treatment' for their children.

Some psychologists (and doctors too, angry doc supposes) believe that parents of a child with disability undergo the process of mourning and grieving for the loss of a "normal" child. This concept is discussed eloquently in this article by psychologist Dr Ken Moses reproduced on the Pediatric Services website.

angry doc feels these two paragraphs from the article must describe how parents of children with autism feel:

"Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning...

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving."


angry doc cannot claim to understand the pain and sense of loss felt by parents of children with autism, but as a medical professional he understands enough about science and evidence to know when the claim of a cure is no more than just a claim. If autism cannot be cured - and there is no evidence that it can be - then perhaps what parents of autistic children should do is not to subject their children to one form of unproven therapy after another, but to accept that their children, different as they may be, are children to be loved, and not disabilities to be cured.

As for pain, Dr Moses concludes in his article that "experiencing and sharing the pain is the solution, not the problem." So if it's all right with you, angry doc would like to go savour his pain now.

Thank you.

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