Jennifer Storbo lives with the effects of her unbearable choice every day.
Her son, who has non-verbal learning disabilities and Asperger's syndrome, also suffers from depression and anxiety so debilitating he rarely leaves the house.
The one drug that helped breathe life into Connor again, a powerful antipsychotic, came at a terrible price. He gained 75 pounds in a matter of months and was unable to produce testosterone properly, problems Ms. Storbo is convinced are the result of taking risperidone.
She had to make a decision between alleviating her son's psychological torments or setting him up for a lifetime of high blood pressure, heart disease, Type 2 diabetes and other serious conditions linked to excessive weight gain.
"Talk about being between a rock and a hard place," Ms. Storbo says from her family's home in Port Moody, B.C. "Parenting isn't supposed to be this hard."
While wrenching, it turns out Connor's story isn't all that rare.
Children and teenagers across the country are caught in a terrible bind between needing the stabilizing response antipsychotic drugs provide and suffering the devastating side effects they can exact.
Tremors and uncontrollable muscle movements are among the more serious problems tied to these medications.
But urgent new concerns about the links between atypical antipsychotics and abnormal, excessive weight gain have begun to emerge as a growing number of doctors and parents report children taking the drugs seem to have an insatiable appetite.
Health Canada issued a warning about these side effects in January, revealing it has received 29 reports of cardiometabolic problems linked to atypical antipsychotics in children under 18, including obesity, hypertension, as well as lipid and glucose abnormalities, risk factors for heart disease and Type 2 diabetes.
"The weight gain is horrifying for some of them. We have parents with every cupboard locked, every fridge locked," said Wendy Roberts, a developmental pediatrician at Toronto's Hospital for Sick Children and pediatrics professor at the University of Toronto. "There has to be a response."
The cruel irony, according to physicians and experts who prescribe these drugs and study their impact, is that the vast majority of young people should have never been prescribed these drugs in the first place.
Atypical, or second-generation, antipsychotic drugs came on the market in the 1990s. Designed to treat schizophrenia and related psychotic disorders, this new class of drugs was heralded by the medical community as a long overdue alternative to older antipsychotics, which caused many patients to develop serious neurological side effects.
But something strange has been happening over the past few years. Despite the fact almost no research has even looked at the safety and efficacy of atypical antipsychotics in children and adolescents, and while none of them have been approved to treat anything other than schizophrenia in teens, the number of young people being given prescriptions for these potent medications has ramped up substantially. (Of the seven atypical antipsychotics on the market in Canada, only one, aripiprazole, sold under the brand Abilify, is approved for use in young people. Even then, the approval is restricted to 15- to 17-year-olds for treatment of schizophrenia).
The number of atypical antipsychotic prescriptions dispensed from retail pharmacies for Canadians under age 18 rose from about 772,000 in 2007 to more than 1.3 million in 2011, according to IMS Brogan, a company that tracks the pharmaceutical industry. The dollar value of those prescriptions shot up from about $38 million in 2007 to nearly $54 million in 2011.
The drugs are being used to treat attention deficit hyperactivity disorder, depression, developmental disabilities, autism, conduct disorder, anxiety and even insomnia, all conditions for which they have not been approved by health regulators.
"I think it's very concerning," said Dina Panagiotopoulos, assistant professor in the pediatrics department at the University of British Columbia and one of the loudest voices calling attention to the serious side effects of second-generation antipsychotics in young people.
Part of the reason more young people are being placed on powerful antipsychotics is the perception they are safer than older drugs, and therefore can be used to control aggressive children, Dr. Panagiotopoulos said.
But limited resources, scant access to psychological services and pressure from parents and teachers means some doctors are simply writing prescriptions as a way to manage the behavioural problems of children.
"It's not the first choice but in some cases, medication is turned to because there's limited access to other types of treatment," said Jana Davidson, medical director and head of children's and women's mental health programs at the Children's and Women's Health Centre of B.C. "What do you do in those situations?"
The answer in James Wright's mind is clear: Don't prescribe them. The managing director of the Therapeutics Initiative, an independent drug review panel in B.C., argues there's little research and no government approvals supporting the use of atypical antipsychotics to treat behaviour disorders or depression in children and teens, so it doesn't make sense to be doling them out.
"It doesn't make sense," Dr. Wright said. "Parents should know… there's major concerns about the daily regular use of these drugs and they should be … advocating for their child and stopping it."
That's what Ms. Storbo did in 2008, after her son Connor was on risperidone for about a year. The withdrawal was so intense he stayed on the couch with a sheet over his head for three days, barely moving. Connor, who is now 20, struggles some days to complete such basic tasks as brushing his teeth and remains, for the most part, housebound. Still overweight, Connor has been badly affected by a poor body image and also must take Arimidex, a drug usually given to female breast cancer patients, to stabilize his hormone levels. Connor is taking new medication his mother says is "working somewhat" and is receiving some help from community support centres.
"I'm past the point of thinking there is going to be any magic bullet," Ms. Storbo says. "I think it's going to be a very long haul, but I haven't given up hope."
A SNAPSHOT OF THE DRUGS
Atypical antipsychotic drugs on the market:
clozapine, risperidone, olanzapine, quetiapine, paliperidone, ziprasidone and aripiprazole
What they are approved to treat:
schizophrenia, bipolar disorder or other psychotic disorders
Are these drugs approved for use in young people?
With the exception of aripiprazole (brand name Abilify, approved for treatment of schizophrenia in 15- to 17-year-olds), none of these drugs is approved by Health Canada for people under 18
What are the concerns?
The number of young people being prescribed atypical antipsychotics for attention deficit hyperactivity disorder, autism, depression, anxiety and a host of other problems has exploded in recent years.
Recently, more doctors and researchers have been reporting that young people on these drugs are vulnerable to excessive weight gain, which could lead to high blood pressure, obesity, lipid and glucose abnormalities, risk factors for conditions such as cardiovascular disease and Type 2 diabetes.