B.C. doctors deny child experimental treatment
Jon Woodward, ctvbc.ca
Published Tuesday, May 17, 2011 11:07AM PDT
A Vancouver mom is angry that doctors at BC Children's Hospital would rather put her 11-year-old mentally ill son in long-term care than try the treatments recommended by an American specialist.
Canadian doctors say they are doing the best they can with Josh Heckley, who doesn't respond to drug treatment, falls into rages, is barely able to speak, and hardly resembles the bright kid he was only two years ago.
Neurologist Dr. Rosario Trifiletti, who is based in New Jersey, has diagnosed him with a rare disease of the immune system, and believes he would improve with blood treatments. But local doctors question the diagnosis, and argue those treatments are too experimental to try.
"That means they've given up," said Josh's mom, Jodi Heckley, who has complained to the hospital and to B.C.'s ombudsperson. "Talking about putting him in a group home is not acceptable. That's my son."
Family members say Josh was an energetic youngster who sung in choir at church, was a whiz at computers, and had dreams of being a video game designer.
"Before this happened, you wouldn't know anything was wrong with him," said his teenage brother Nick.
But two years ago Josh became wildly emotional. He started displaying symptoms of obsessive-compulsive disorder and attention deficit disorder. Then he started losing his ability to speak.
"He can't do his schoolwork anymore," said Jodi Heckley. "He's gone from a child who was getting As and Bs and doing great to a child that has to be institutionalized."
In January, Josh was admitted to BC Children's Hospital. Doctors tried a number of therapies, including antipsychotic drugs, and while Josh's rages have subsided somewhat, his other symptoms haven't changed significantly.
"It's complex," said Dr. Jana Davidson, the medical director of child and adolescent mental health programs at BC Children's Hospital. "Most of the children we see in our unit are highly complex."
Desperate, Jodi Heckley contacted a specialist in the U.S. Dr. Trifiletti ran several tests and observed Josh on videos shared over the internet.
Dr. Trifiletti concluded there was a chance that Josh's symptoms came from a rare disease of the immune system called PANDAS.
Some doctors believe that PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) is a syndrome where a simple infection can cause the body's immune system to attack itself.
When the immune system attacks nervous cells, the result is a sudden degeneration in mental capacity, said Dr. Trifiletti.
"In a situation like this, it's dire straits," he told CTV News. "He's only gotten worse over the past three or four months."
Dr. Trifiletti said Josh might improve if given two therapies: plasmapheresis, a kind of dialysis of the blood where the harmful immune cells are removed; or IVIG, where the body is exposed to a number of other immune antibodies.
Dr. Trifiletti said both treatments have worked in other children and are available at BC Children's Hospital.
"Based on the evidence that we have and based on what we know about other children it's a very tenable diagnosis at this point," he said.
But Dr. Davidson said the medical community is far from decided on the existence of PANDAS, which is not listed as a diagnosis in major medical texts.
And Dr. Davidson doubted the diagnosis of Dr. Trifiletti, who has never examined Josh in person.
"I have to stand by the expertise of those that are part of our institution and recognize that this is a controversial diagnosis," she said.
The hospital has already had a conference call with Dr. Trifiletti, but dismissed the diagnosis in favour of a diagnosis of autism with a combination of other anxiety disorders.
Dr. Davidson dismissed suggestions that her doctors had "given up" and said that the hospital would convene an ethics committee to determine what the next steps in treatment would be.
"There's a process in place and the necessary people will be invited to the table, including the family," she said.
Jodi Heckley says if she can't convince local doctors to perform the procedure here, she would go to the U.S. and re-mortgage her home to pay for the $5,000 treatment.
"It's extremely hard," she said. "I've spent many nights falling asleep, crying, and sobbing," she said.
Waiting too long might jeopardize Josh's chances of recovery, said Dr. Trifiletti, adding that the change in Josh could become irreversible by mid-summer. He advocated that the child be treated now.
"It's very little to lose, and to ask Ms. Heckley to wait 10 years until we've proven this to work is not reasonable," he said.