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MDs grapple with McCarthy Effect Add to ...

A few years ago, when Vancouver autism specialist Vikram Dua faced a parent's query about a trendy alternative therapy for a child, he wasn't the best listener.

"I used to rail against it or argue with parents," he recalls of the discussions about restricted diets or the use of supplements.

The result: He tended not to see those families again. "And it didn't help the kids very much."

Now, Dr. Dua is less combative. He explains that of the more than 1,000 treatments out there, one or two might, indeed, work. He just doesn't know which ones work and for which kids.

Instead, Dr. Dua, a child and adolescent psychiatrist at BC Children's Hospital, asks three questions. Is the treatment safe? Will it suck time and resources from others that may help more, such as behavioural or speech and language therapy? And, in general, does it fit the parents' world view?

If the answers suggest no potential for harm, Dr. Dua says, "Go forth and propagate. And if it works, come back and tell me about it."

Call it the Jenny McCarthy Effect. The former Playboy bunny has followed up her public crusade against the vaccines she believes caused her six-year-old son's autism with a new book that details how she "beat" that autism with a restricted diet, metal detoxification and vitamins.

Ms. McCarthy's crusades aren't going unnoticed; she's made various media appearances and landed a recent cover story in US Weekly.

In response to Ms. McCarthy and other advocates, doctors who treat children with autism say, their bedside manner has had to evolve.

Autism experts have seen first-hand that parents of autistic children are particularly vulnerable to the lure of upstart remedies. While diagnoses can now be made as young as 18 months of age, there is often a long wait for expensive behavioural therapies. This leaves parents anxious to search for others.

Autism, a developmental disability known to affect brain function, resulting in difficulties with communication and social interaction, and unusual patterns of behaviour, has attracted some romantic notions, Dr. Dua says. "There is an Awakenings phenomenon," he says, referring to the 1990 movie in which Robert De Niro's character is briefly stirred out of a catatonic state. . "If only there was some way to unlock this child, unlock the mystery. There's this search for a panacea, for the one thing that's going to fix it."

Traditional medicine hasn't been able to offer parents a great deal of hope. When parents say the studies on medication aren't that strong, "it's not an unreasonable point," he says.

Darlana Mancuso, a mother living in Burnaby, B.C., has seen an increased openness in the 2½ years she's been seeking help for her son, Christian.

Their first pediatrician didn't think anything was wrong with Christian, now 5, even though he was displaying major behavioural problems. She now has a "dream team" of occupational and speech therapists, doctors and pediatricians who are willing to discuss everything from testing a few dietary changes to pulling back on his vaccinations.

"I've noticed in the last little while doctors now, I don't know what it is, they're not talking their talk any more," she says. "Some of them are saying that the milk, the gluten and the sugar - removing them is helping out."

Wendy Roberts, a developmental pediatrician who specializes in autism at Toronto's Hospital for Sick Children and at Bloorview Kids Rehab, says she's not only entertaining queries about diet and supplements, she's been inspired by these parents to start her own research on the effects of supplements such as Omega-3s, which have been shown to have some positive effects on children with attention-deficit hyperactivity disorder.

In her practice, she warns parents that she's never seen diet make a difference in a child who is not among the 20 per cent of autistic children with stomach and digestion issues. And she says the link between these issues and brain function remains unknown.

If parents do want to forge ahead, she advises a very gradual approach, with a huge amount of documentation to chart any changes. And, like most doctors in the field, Dr. Roberts says, she will also emphasize continuing with behavioural therapy.

At the other end of the spectrum, some pediatricians are known for heartily endorsing a number of alternative therapies. Chatham, Ont., pediatrician Wendy Edwards, who has experienced some success with a gluten- and dairy-free diet for her 8-year-old son, says parents considering the diet seek her out or are referred by other doctors who are open to the idea. "Doctors are starting to realize this is becoming huge and you can't just brush it off any more."

But she finds herself managing the expectations of parents thrilled to have found an ally. She is careful to tell parents that their child may not improve on the diet. And like her more conservative peers, she is a firm opponent of chelation therapy (a metal-detoxification process) and oxygen chambers.

Dr. Edwards is especially careful with the word "cure." In Ms. McCarthy's new book Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Ms. McCarthy writes that her son doubled his vocabulary within two weeks of starting the gluten- and dairy-free diet and has now recovered.

"God bless Jenny McCarthy for getting us on the map," Dr. Edwards says. "But she's a little extreme sometimes."

Dr. Roberts says she shuddered recently when a grandfather called to say his grandchild no longer had autism. "For the majority of kids, if they've had real, true autistic wiring, they may go through a period where they look great and that's wonderful," she says. "But when the next developmental challenge comes and the anxiety level goes up, or the environment changes and the symptoms come back, the parents are devastated."

If and when that happens, up to 70 per cent of autistic children can also show signs of a budding psychiatric illness. Parents may choose to intensify alternative treatments instead of trying medication that can work, says Dr. Dua, a member of Canada's Mental Health Commission.

Dr. Roberts says that even when she disagrees with an extreme approach such as the potentially deadly chelation, she will try to find a way to reduce the chance of harm.

Having stumbled upon an unlicensed physician practising the treatment, she implores parents to check credentials. She urges parents to ask the doctor to monitor the blood for minerals such as potassium that can fall to dangerously low levels. Above all, she tries not to blame parents for their easy devotion to seemingly odd choices.

"I know they're desperate, and who knows what any of us would do in that situation."

 

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