Finding Normal CBC News Online 2006 May 15

"J" 's story.

Finding Normal - A small boy and his grandparents emerge from a lengthy ordeal of diagnoses and drugs.Children rely on the adults in their lives for care and support. When that support sometimes breaks down, other grownups are entrusted with special responsibilities organizations like the Children's Aid Society and people like doctors, are brought in to make things better. This is a story about a boy who was heavily medicated over a period of time. He'd been misdiagnosed with several psychiatric conditions, and his medications were steadily increased after reports of more and more difficult behaviour. ( http://www.cbc.ca/national/news/normal/ ) Publication type: news

Cheung M. Finding Normal CBC News Online 2006 May 15 http://www.cbc.ca/national/news/normal/ Notes: Ralph Faggotters Comments: This article highlights a number of issues, including the arbitrary nature of psychiatric diagnosis of childrens behavioural problems.

This boy was diagnosed, in succession with-

ADHD Tourettes Syndrome OCD Oppositional Defiant Disorder Aspergers Syndrome Bipolar disorder This range suggests that paediatric psychiatric dagnosis is, at times, no better than randomly selecting a label out of the Diagnostic Manual. The only thing that we can say for certain is that he has disruptive behaviour. But disruptive behaviour on its own is not a reason to provide medication, so a legitimizing label must be found to justify the use of the predetermined favorite drug. New diagnoses are added in to vindicate the decision to add in new different medications when the old drugs dont work. Sadly, this is not an isolated example. Full text: Finding Normal Reporter: Michelle Cheung Producer: Kamala Rao From The National, May 15, 2006 Children rely on the adults for care and support.

When that support sometimes breaks down, other grownups are entrusted with special responsibilities organizations like the Childrens Aid Society and people like doctors, are brought in to make things better. This is a story about a boy who was heavily medicated over a period of time. Hed been diagnosed with several psychiatric conditions, and his medications were steadily increased after reports of more and more difficult behaviour. Thats when the boys grandparents step in, concerned about their grandson and the effects the medications were having on him. Now out of the group home, the boy is off all of the drugs he was prescribed there. The boy in this story is referred to as J throughout in order to protect his identity. How would you describe yourself to someone who doesnt know you? J is asked. Nice. Not very calm at times. Very good at biking. Not too good at skate boarding but still like to sit on it and zip down hills! As long as hes moving, the boy we call J is free, free from his memories.

I didnt really think about much. I was always tired my arms and stuff. I couldnt get out of bed often, he says. Two years on, J is transformed. A relief to his grandparents. He just loves to laugh hes just a completely different kid from, from those times before, his grandfather says. The group home. (CBC) The 15 months he spent as a ward of the Durham Childrens Aid Society on sometimes, crippling doses of medication I couldnt stand up I hardly could climb the stairs I pretty much had to crawl the stairs, J says. It was like the life in his body was being drained out of him, Js grandmother says. Early family photos reveal a happy, healthy child. But his young parents struggle with a variety of mental health problems; problems they see reflected in their son complaining hes aggressive and inattentive. Three months shy of his sixth birthday, Js pediatrician diagnosed Attention Deficit Hyperactivity Disorder or ADHD. The doctor prescribes the stimulant Ritalin. But his parents arent satisfied with the diagnosis. Over the next two years, they take the boy to several psychiatrists: one adds Tourette Syndrome, Obsessive Compulsive Disorder and Oppositional Defiant Disorder to the boys expanding diagnoses. Another doctor suspects the boy has a form of autism called Aspergers. Yet another adds bipolar disorder, or manic depression, to the list. J learns to keep a pill schedule of anti-depressants, anti-convulsants, stimulants and tranquilizers. (CBC) While most kids his age are learning to tell time, J is learning to keep a pill schedule of anti-depressants, anti-convulsants, stimulants and tranquilizers. But his parents still cant cope with his disruptive behaviour. Eventually, the Durham Childrens Aid Society steps in and seizes the eight-year-old. The CAS places J in a group home an hour northeast of Toronto. Youth Connections is a privately-run residence for troubled boys; children diagnosed with severe emotional and behavioral disorders. In seizing J, the Childrens Aid Society should be taking the boy out of a bad situation and putting him into a better one. But his 15-month stay at the group home only makes things worse. By the time his grandparents get J out, there will be another psychiatrist, more medication and more anguish.

You know how you feel when you have a headache, J says. Like make that headache outside your head and around you and thats sort of like the way to describe how the atmosphere at the group home felt like not very happy. J shares a room with another boy, and stays out of trouble, at first. Dr. Albert Massabki (CBC) But soon, group home workers complain about Js escalating bad behaviour to the group home psychiatrist, Dr. Albert Massabki. A report from Feb 6, 2003 described J: quite unfocused when upset (he) becomes very unstable make(s) comments such as I want to die. Dr. Massabki responds by introducing J to yet another drug: an anti-psychotic drug called Seroquel. By now, Js maternal grandparents have become actively interested in raising him. But theyre frustrated by the limited access imposed by the Durham CAS. They really didnt want to give him over to us, but we werent about to stop fighting for him, his grandmother says. Initially Durham CAS allows his grandparents to see J twice a week for a couple of hours. Sometimes they venture no further than a parking lot. But its a welcome escape, and a chance to observe Js behaviour. His grandparents love those visits. And hate them. I would sit in the back of the van and he would just lay on me, his grandmother says, Hold me, he would say, you know you could feel his body sinking after taking the medications. It made me very very angry to give him these pills. As his legal guardian, Js CAS case worker has signed a medical consent form allowing the psychiatrist to increase the boys medication. With continued reports of J acting out, the doctor increases the boys medications six times in less than a year. The grandparents tell the CAS they want the pills to stop. (CBC) The grandparents tell the CAS they want the pills to stop. But they have no legal rights.

The Childrens Aid Society wont even tell them what the pills are. So his grandmother decides to find out: A pharmacist checked the pills and told her that he was on Aeroquel, an anti-psychotic drug used to treat schizophrenia and bipolar disorder in adults. It also acts as a sedative. A 25 mg dose can knock out some grownups. Seroquel has not been proven safe or effective in children.

You always feel tired, J say. When you wake up you cant get out of bed. But then you have to and you go to school. The highest grade level I got when I was nine years old in the group home was about kindergarten. We could see the steady progression of him going downhill getting skinnier and skinnier, his grandmother says. The grandparents apply to become Js legal guardians. Clinical psychologist Marty McKay. (CBC) After 10 months, the Durham CAS calls in clinical psychologist Marty McKay to assess whether the grandparents would make fit guardians of the boy. Before I met the child I conducted a review of all the file materials [at] the Childrens Aid Society, over 1,000 pages, McKay says. I thought I was going to be dealing with a very dysfunctional child. Over several months, McKay observes J while hes visiting with his family. She finds him happy and enthusiastic with his grandparents. She too notices, that after J takes his medication, he changes.

Approximately 15 minutes later, he was not reasonable anymore. He couldnt process information. He would be acting in a random fashion and sometimes go into a rage. McKay recommends J live with his grandparents. (CBC) McKay voices her alarm in her final report to the Durham Childrens Aid Society: I am quite concerned that J is receiving dangerously high levels of medication and that this regime has no actual treatment value but is primarily, if not wholly, designed to suppress symptoms. McKay recommends the child live with his grandparents. The court agrees. As J settles in with his grandparents, they look for help to take him off the medications prescribed at the group home. They find Dr. Wendy Roberts at the Hospital for Sick Children. She is a pediatrician who helps untangle multiple diagnoses in kids. When she meets the nine year old, hes consuming a combination of: * 50 mg of Ritalin * 500 mg of Divalproex * 500 mg of Seroquel. Every day. Dr. Wendy Roberts. (CBC) On the whole, all the classes of drugs were at the higher level of what you would typically expect to be seen used in children, Roberts says.

Under Doctor Roberts direction, his grandparents carefully wean the boy off his drugs bit by agonizing bit. He would pour sweat. He had fevers he would see bugs where there were no bugs. He was delirious. His detox takes 10 months. We were able, as we came down, to get him off them all and we felt he was more connected with us, happier and had less anxiety when he was drug-free.That doesnt happen with every child, Roberts says, I think he continues to have an attention problem; I think he functions best in a stable, supportive, environment. Weve no suggestion at this time that he would meet criteria for bipolar disorder and hes still young for that and he would not meet criteria for Tourette Syndrome at this point. Hes not, he does not have Asperger disorder. He does not meet criteria for an obsessive-compulsive disorder at this time. I think in eight months he grew four inches. Js grandmother. (CBC) The boy thrives on his grandparents farm. He gains weight, going from 29 to 45 kilograms in just three and a half months. I think in eight months he grew four inches. We were told by his pediatrician that it was the drugs that was stunting his growth, his grandmother says. While his grandparents are delighted hes doing so much better, four months into his detox, they were still troubled by some disturbing behaviour. At night, he refuses to go up to his room on his own. He wakes up crying. He wets the bed. His grandparents learn the scars from the group home run deeper than they feared. J asks to be left alone with the camera. (CBC) While being interviewed by an advocacy group, J asks to be left alone with the camera. He says: It never happens in the day. The group home staff never checked up on us, because they are always down watching TV. He then describes having been sexually assaulted repeatedly by another resident at the group home. This is the truth. I did not tell it to my grandma before. I was too embarrassed to even tell it to her. And this is what happened most of the times. He gets up and walks away, leaving an empty chair. While Js revelation is new to his grandparents, it appears the Durham Childrens Aid Society knew something was wrong early on.

A month after J moved into the Youth Connections group home, his CAS caseworker wrote this note in her file: J has experienced inappropriate sexual behaviour. In hindsight, his grandparents believe that J suffered from a disturbing sequence of events.

The more he acted out, the more he got drugged. We saw that more and more drugging came after he had been sexually abused, his grandmother says. Only after J settles in with his grandparents is his former roommate at the group home convicted of sexually assaulting the boy. Js long nightmare is over. Hes been out of the group home for more than two years, off his medications for one medications he doesnt need, for conditions he doesnt have. Js dancing to his own tune, trying to put the past behind him. But he still has questions about the drugs he was prescribed: Why would you put a kid on that when you see how nice and kind he is now that hes off of it. Why would you do it in the first place? J asks. To begin to understand what happened to J, you need to look at conditions in the group home an environment with kids in crisis, staff and a doctor under pressure. If J was ever going to get off his medications, this group home was not the place to be. Dr. Wendy Roberts says, Once children are in a group home situation, if theyre getting a relatively brief assessment from a clinician who may well be overworked and has a very short period of time, theres a tendency just to have the medication increased rather than to go through a systematic kind of withdrawal and careful look. With each diagnosis came more medication and the possiblity of drug side effects. This boy had been diagnosed with ADHD and was prescribed Ritalin at quite high dosages, and its a well-known fact that Ritalin especially at high dosages can cause tics, McKay says. So, when he started demonstrating this side effect, he was then diagnosed as having Tourette syndrome. If a drug makes you feel dizzy or miserable or unwell, then you might act more irritable, more upset, you might be more explosive, you might look aggressive. So there are ways, because behavior is just an end product, there are ways of acting that would make you think: OK maybe its this disorder, maybe its that disorder, Roberts says. (CBC) In their reports to the psychiatrist, group home workers often did describe J as irritable, upset, and aggressive. They also noted J was at times incontinent, and slow with routines. But they never made a connection between Js behavior and possible drug side effects. With one exception. About five weeks after J was started on Seroquel, the group home supervisor suggested that some of Js behaviour might be related to the boys new medication. Stating that J has

appeared to be more defiant towards staff since the med began. Still, it seems the staffs ability to identify possible side effects was uneven, at best. One worker laughed and said he did a face plant in his food. They gave him his medication at suppertime during the week and he just fell forward into his food, his grandfather says. In a letter defending his treatment of J, the psychiatrist, Dr. Massabki acknowledges he relied in large part on the group home workers to tell him if the boy showed any adverse reactions. Massabki wrote: There was no report of any side effects. Some of the workers are wonderful at coming in and telling us what goes on, Roberts says. Others are very inexperienced and dont necessarily know what you need to hear.

But clinical psychologist Marty McKay says that, in some cases, the dynamic can involve more than inexperience. The labelling is often done by people who have a vested interest in the children being compliant, such as group home workers who may fill out a checklist and check off things that make a child appear ADHD or Tourette Syndrome or bipolar, and the psychiatrist simply writes out prescriptions. Dr. Roberts says she has seen many cases where childrens behaviour worsens in care. Still, Js case shook her: This is one of the most, I think, severe situations that I have come across. Its not unique. There are lots of children, particularly in the child-welfare system, who have a lot of behaviours that have really been exaggerated by very unfortunate interactions between their own relatives, other caregivers and clinicians who are often feeling very uncomfortable with dealing with the complexity of what theyre being asked to consult to. And that, McKay says, is also what happened to J. As his conditions worsened, his behavior deteriorated. He was angry! He was often angry that he was in this group home. Later on I found out that he had more reason to be angry than I knew at the time I was doing the assessment. That was later he began to disclose he had been repeatedly sexually abused while in the group home. If you get a call from some home every day saying: behaviors out of control, behaviors out of control, you know staff are threatened, things are not feeling good the natural inclination is to increase the dose of medication, Roberts says. Js grandparents. (CBC) The grandparents, along with McKay lodged a complaint with the College of Physicians and Surgeons a self-regulating professional body. They accused Dr. Massabki of failing to adequately diagnose and treat J. Last spring, the college cleared the psychiatrist; concluding the medications and dosages prescribed by Dr. Massabki are standard, and are medications commonly prescribed for young patients in similar situations with good effect. McKay and the grandparents have appealed the decision.

Massabki refused to comment on this story. Youth Connections would not talk to us. The Durham CAS declined our request for an on-camera interview. It would only provide a written statement: It says its policy on giving children the types of drugs given to J is in compliance with Ministry regulations. In fact, the law in Ontario requires the risks and side effects of each drug be set out on medical consent forms, before medications are administered to children like J. The consent form signed by Js CAS guardian and the group home psychiatrist did not. The same law gives the government the green light to set up an independent board to investigate and review cases like Js. That board could recommend medications be adjusted, reduced and even stopped. The thing is, that board has never been set up. That decision rests with the minister of children and youth services. J is now focused on making up lost ground. (CBC) After being assessed by more than 70 doctors in 11 years, J is now focused on making up lost ground. You can learn a lot more where people actually want to teach you and where you have friends to encourage you and stuff to play with you have a stronger urge to learn, J says. J no longer wakes during the night crying, but he still wont go up to bed on his own. It could be a normal thing and something will remind him of an event that took place within the group home and we have to deal with that and comfort him and help him through it and tell him hell never go back there again, his grandmother says But going forward is going to be a challenge for his grandparents: Their fight for J has drained their savings. Now theyre making room for another. Their granddaughter is also a ward of the Durham Childrens Aid Society. Since moving in with her grandparents, shes completed a drug- reduction program similar to that of her older brother. One of my greatest compassions now is for people out there who are going through the same thing we are. When youre in the middle of it you feel like you have no hope. And when you get out of it you are thankful its over and you pick up the pieces and keep going, Js grandmother says.