B.C. boy with rare disorder gets experimental treatment
Published Tuesday, August 9, 2011 4:48PM PDT
After he was initially denied treatment, an 11-year-old with a mysterious auto-immune disorder is now getting the blood therapy specialists say he needs at BC Children's Hospital.
A dispute between doctors over the correct diagnosis of Josh Heckley's condition had pushed his family to explore paying as much as $15,000 for treatment in the U.S. -- but his mother is happy he's being treated at a hospital in B.C.
"We're on the right road," said Josh's mom, Jodi Heckley. "He's getting better."
Over the past two years, it seemed as if Josh had suddenly descended into madness. A boy who loved computers and participated in a choir at church changed to someone suffering fits of rage. Eventually, he lost his ability to speak.
"To have a boy that was so vibrant that can't even function any more -- it's like watching your child leave right before you," said Heckley.
Josh went to BC Children's Hospital, where he was diagnosed with autism and other anxiety disorders. He was given antipsychotics, but at the time doctors admitted they didn't clearly understand the condition, calling it "complex."
Desperate, Jodi Heckley contacted an American specialist, who diagnosed Josh with a rare disease of the immune system called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections).
PANDAS is a syndrome in which a simple infection can cause the body's immune system to attack itself. It's a new syndrome and some doctors don't believe it exists.
Initially, BC Children's Hospital Doctors dismissed the diagnosis, arguing that the American specialist hadn't even seen Josh in person. Heckley explored having Josh treated in a Chicago hospital at a cost of $15,000.
But BC Children's Hospital agreed to take the case to an ethics review, where another specialist was contacted. He also agreed with the diagnosis of PANDAS.
As a result, the hospital offered an experimental treatment of IVIG, or intravenous immunoglobulin, which pools antibodies from a number of blood products in the hope that those antibodies can make up for any deficiency in the immune system.
The treatment is expensive and not normally available except in certain circumstances, which Josh's condition did not meet.
Heckley says Josh has improved substantially after going off antipsychotics, even to the point of being able to go go-carting on a camping trip. He's able to play video games during the procedure, which lasts some six hours.
"They'll get rid of the inflammation and we'll get him back," said Heckley.
She said that a story reported by CTV News in May also influenced the hospital's decision.
"I'm relieved -- absolutely. I know it's because of CTV and you being there and giving them the little push," she said.
BC Children's Hospital declined to comment.
Advocates say patients shouldn't feel bad about getting a second opinion.
J. Lynne Mann of the Canadian Mental Health Association said that when patients take the time to understand their conditions and are direct and polite with their caregivers, better care can result.
"It is incumbent on all of us to be our own advocates or advocates for our children," she said.