Make your own free website on Tripod.com

Obsessive-Compulsive Disorder (OCD)

by Jim Chandler, MD, FRCPC

Part 1

Introduction - What Is OCD?

Obsessions

Common Obsessions

Examples

Compulsions

Definition

Common Compulsions

Examples

Part 2

How OCD disables a person

Time

Agony

Obsessions or compulsions which make a part of life impossible

Example - Charnelle

The Course of OCD

OCD that comes and goes

Example - Jody

OCD that comes, but never exactly leaves

Example - Tim

OCD that changes as fast as the weather

Example - Rebecca

OCD that snowballs

Example - Judy

Long Term Course

Does OCD turn into something worse?

How common is OCD?

Example - Jocelyn

Co-morbidity

Depression

Disruptive Behavior Disorders

Example - Christian

Anxiety Disorders

Learning Disorders

Tic Disorders

OCD spectrum disorders

What is the cause of OCD?

Genetics

Imaging

Chemistry

Infections

Example - Jonathan

Diagnosing OCD

History

Exam

Lab

Mistakes in diagnosing OCD

Missing OCD

Diagnosis OCD when it isn't there

Treatment

Introduction

Cognitive Behavior Treatments

Medications

Treating Co-morbid OCD

Support Groups and Information

[ Next: What is OCD? ]


Introduction

Up until about 20 years ago, OCD was thought to be a very, very, rare disorder. I only saw two cases in my training in the mid 1980's, and neither were children. It wasn't important to find OCD anyway - little was known about it and there were no effective treatments. Over the last decade, everything has changed. We now know that OCD is one of the most common neuropsychiatric disorders. It is also one of the most treatable ones. In pediatric psychiatry I am always on the lookout for OCD because it is common and often very treatable.

What is OCD?

To be diagnosed with OCD, a person must have obsessions or compulsions or both. Besides this, the obsessions and/or compulsions must be disabling.

Obsessions

These are thoughts which are invisible to anyone else. The thoughts bring some distress to the person. The person wishes they did not have these thoughts. They are not based on what is realistically worrisome in that person's life. These thoughts occur over and over, usually hundreds of times a day. A person spends so much time thinking about these things they have a hard time doing their work, taking care of themselves, or relating to others in a normal way.

Common Obsessions

The most common ones in children are fears of bad things happening to family members, exactness and symmetry, bodily functions, lucky numbers, and less likely, sexual and aggressive thoughts. Religious obsessions are less common. Here is the official definition.

Obsessions are:

1. Recurrent and persistent ideas, thoughts, impulses, or images that are experienced at some time during the disturbance as intrusive and inappropriate and cause marked anxiety or distress.

2. The thoughts, impulses, or images are not simply excessive worries about real-life problems.

3. The person attempts to ignore or suppress such thoughts, impulses, or images to neutralize them with some other thought or action.

4. The person recognizes that the obsessional thoughts are the product of his or her own mind (they are not hallucinations. They are not felt to be inserted into your mind by someone or something else)

Obsessions are usually in some way extremely private, embarrassing, or disgusting. Rarely will an adult or child with OCD tell me all of their obsessions. Rarely are obsessions present alone. Usually there are also related compulsions.

Examples

Reading about descriptions of obsessions doesn't give you much feeling for what they really are like. Examples do. Here are some.

Jonathan - unlucky numbers

This 11 year old boy started doing badly in school. This was pretty surprising as he had always been a good student. Jonathan knew why, but he was afraid to tell anyone. He was worrying that he might loose his temper and hurt someone. He never had, but he felt like he might just do it some day. For some reason that he can not explain, if he does anything with the number "9" he thinks he will loose control and attack someone. So the more number "9" he sees, the more he worries about losing control and attacking someone. He wishes he didn't have to think about this all the time, but he can't help it. It takes a lot of energy out of a person to avoid reading or saying the number "9". It means that he is very slow to do his homework (especially math) and has a hard time playing games with his friends. His parents are about to kill him. He will not go to bed at the usual time (9:00 O'clock!). He refuses to ride the bus, is slow to get ready, and never seems to listen. He is in a world of his own.

Kim - sexual

When Kim was 11, she started seeing pictures in her mind of kissing boys in her class. She pictured kissing their genitals. She also pictured kissing girls. She had never been abused, and she had never even heard of oral sex before. The thoughts scared her. She thought she was going crazy. She couldn't sleep at night. She was afraid to go to school. She had severe headaches. Finally, she told her mother and she was brought to her family doctor.

Richie - counting

Richie doesn't know when it started, but he has always been a big counter. Now that he is in seventh grade, it is a lot worse. He thinks he will probably fail the year if he doesn't count things just right. What things? Well, how many tiles is it to his locker from homeroom? How many steps are there to the basement? How many children are on the bus? The problem is, he isn't quite sure he hasn't missed a number here, so he has to go back and count it again, and again, and again. Once someone bumped him just as he reached tile number 278 or was it 279? He got so mad, he screamed at the other boy. When the principal asked what was going on, Richie decided saying nothing was best.

Ashley - disease

Ashley once went to Halifax and was walking along the sidewalk with her friends. She stepped on something yucky, but didn't think much about it until they got to the hotel. The idea came to her that it was a condom, and probably she would now get AIDS from it. She asked her friends what they thought. She asked her mom. Ashley was 15 and had never even kissed someone and was at zero risk for AIDS. She called the AIDs Hotline at least twice a day for assurance. She begged to go to the doctor for more tests. She read every book she could about AIDS. When she started talking about her funeral arrangements, her mother took her to the doctor who sent her to the psychiatrist.

Andrea - did I do something horrible?

Like most 16 year olds, Andrea was very excited to get her driver's license. She was a careful driver and her instructor and the testing person both commented on what a careful and mature driver she was. Looking back, she maybe was a little too careful. The first week she had her license everything went fine. Her Dad was quite excited that she would be able to drive down to her dentist appointment in Yarmouth all by herself and then pick him up at the fish plant on the way home. Well, Andrea's Dad was about to call the RCMP after an hour of waiting for Andrea. When she arrived she was in tears and exhausted. Her father assumed she must have been in an accident, but that was not the case. Andrea drove by the Port Maitland school during recess. She got a kilometer down the road and started wondering, could she have accidentally run over a child in the road and not noticed it? So she drove back to check. No, all the kids were now inside. So off she drove again another couple of kilometers. Maybe she should have asked the school secretary just to be sure. She could hardly drive with these thoughts going over and over in her mind. The moment she got to the dentist, she was on the pay phone to the school. No, they said, all the children were fine. And so were her teeth. Unfortunately as she drove home she passed a bunch of kids on their bikes, a couple of dogs, and a group of kids playing hockey in a driveway. She figured she had hit them all and each time had to go back and check at least once to make sure she hadn't.

Ann - mental acts

Ann is a quiet girl who always seems worried. Over the last year, she has had a lot to worry about, at least in her own mind. She sees different shapes in her mind, and has to cut them exactly in half or turn them exactly half way around. If she doesn't her Dad's boat will go down with him. She doesn't know how it started, and she certainly doesn't know how to make it stop. No one would ever have known about this if she hadn't mentioned to her Aunt that she wished she would go to sleep and never wake up again

Darrel - order, evening up and symmetry

If you asked Darrel's brother Tony what kind of person Darrel was, Tony would say he is a great brother, as long as you don't mess with his stuff. Darrel was always tidy, but now it was worse. At age 10 he had his half of the room just right. Exactly half the legos were on the one side of his bed, the other half on the other side of the bed. The Gargoyles were lined up perfectly. The books and videos were absolutely even. His clothes were sorted by color. His posters were perfectly lined up. All the furniture was lined up with the lines in the wall paper. Tony himself was not like this, and most everything else in his life was a mess. Darrell told me that he felt that if he didn't keep things just right, something bad was going to happen to his Dad. His Dad was usually out fishing. Darrel thought that if he didn't keep his things just right, his Dad's boat might go down. Darrel's father couldn't care less what his room looked like. Darrell was on the verge of failing as he was not doing his homework. Why? He could not make the letters just right and had to keep starting over. He spent a good three hours a day organizing his room.

Kelly - doubt

Kelly met her boyfriend last year when she was 16. He is 18 and they are madly in love. Or at least she thought so until about a month ago. She started to wonder if she really did love him and if he really did love her. So she asked him, and he reassured her that he loved her. That helped for about a half an hour, so she asked him again. After telling her this about 30 times a day for a week, he was starting to wonder if maybe he had choose the wrong woman! He shared this burden with Kelly's mom. Kelly asked her most of her waking hours the same thing. Do I really love him? After a few weeks of this, Kelly's mom was going out of her mind. When Kelly's friend Tanya called and said she was worried because all Kelly ever talked about was you know what, Kelly's mom decided to do something before Kelly ruined every relationship she was in.

Deb - religious

Deb did not come from a religious family. They rarely attended church on Sundays. When she was 13 she started wondering if there was a God and what he might think of her, which is not uncommon. The same thought kept going through her mind, "Am I doing what God wants?" She finally started asking people what they thought. She asked her parents, a friend's youth pastor, and a teacher. No one could reassure her. Then, almost overnight, the thoughts changed to wondering, "Will I be forgiven for what I have done wrong"? Now Deb hadn't committed any unusual sin. She had never thought of this before. She started to do worse in school as she spent more and more time thinking about this. Sometimes she tried to find the answer, but mostly she just sat and thought about this question over and over and over. Finally, her Mother confronted her and told her that she was going for a urine drug screen for street drugs. After a big, big fight, Deb finally told her parents what she was thinking. They thought she was going crazy and brought her to the hospital.

Compulsions

Compulsions are things that people do or acts they perform in their heads. They are repetitive and senseless, just like obsessions. In many people, the compulsion is linked to an obsession. Here is the official definition.

Definition

1. Repetitive behaviors are mental acts that the person feels driven to perform in response to an obsession.

2. The behaviors or mental acts are aimed at preventing or reducing distress or preventing some dreaded event or situation; however, these behaviors or mental acts either are not connected in a realistic way with what they are designed to neutralize or prevent or are clearly excessive.

Common Compulsions

The most common ones in pediatric OCD are: washing, repeating, checking and ordering. (1)

Less common ones are rituals to protect themselves from bad things, counting, hoarding and slowness.

Examples

Sean-Cleaning rituals

Sean's mother first started to wonder what was going on when Sean was spending so much time in the bathroom. So one day she decided she had better found out. While he was in there she quietly came up to the door and listened. She heard water running. She opened the door just a crack but could only see her son's hands in the wash basin, scrubbing and scrubbing. She shut the door and waited. A few moments later out he came, as if nothing was going on unusual. She watched the bathroom door that day and made some notes. Sean made 20 trips to the bathroom that day and none was less than 5 minutes. So she showed him her notes. At first he just screamed at her for bugging her. Eventually, he started crying but all he could say was, " I just feel dirty all the time" I can't help it".

Rob-Checking

When Rob was 8, his mom was always reminding him to check the door, make sure he had his coat, and similar things. Now Rob thinks to himself, "I think I have made up for that about 100 times worth now!" When Rob goes out the door, he has to check just about everything. Was his CD player turned off? Did he turn off the lights? Did he lock the door? Did he accidentally turn the TV on? Did he hang up the phone? So, Rob is very anxious and worried that maybe the house may be broken into, or there might be a fire, or something, and goes back and s it again. But by the time he is done checking the last thing, he wasn't absolutely sure he had checked the first thing. The solution? Rob doesn't leave home much, and when he does, he makes sure someone is there. Once he is at school, he is mostly checking his pants. He keeps wondering if maybe his fly is down. So he checked it. About every 30 seconds.

Robin- touching

Everyone thought Robin was weird at school. As soon as she came into a room she would walk down the desks and lightly touch every third one, or was it every other one? Once she was seated, she would work, then touch, work, then touch. There were round bolt heads that attached the desktop to the desk. They stuck up a little bit off the top of the desk. Robin felt like she had to touch them. She half realized that everyone knew she was doing this, but she didn't want to say anything because then everyone would know she was crazy. Why did she do it? To keep from becoming a lesbian. She knew this was stupid, but she couldn't help it.

Randy-slowness

Randy got up every morning at 6 am. The bus did not come until almost 8:30, and he missed it about half the time. His mom was always trying to get him to hurry. Well, says Randy, you would take a long time, too, if you had to get ready perfectly each day. What does that mean? To start with, it means when you get out of bed, both feet touch the ground at exactly the same time. It means you brush your teeth 30 times on the top and exactly 30 times on the bottom. It means after you use the soap, you line it up perfectly parallel with the soap dispenser. The order for taking a shower and combing your hair is as complicated as getting ready to fly a plane. Every month it seemed there was one more thing that had to be done just right. Once he was dressed, he was fine. Randy finally got help because he was on the verge of being expelled. No way was he going to change his clothes for Gym, shower, and put his clothes back on. He didn't tell them why.

Erika- doing and undoing

Erika started crying when she came home from a birthday party. She was blowing up a balloon and then letting the air out so it would shoot all around the house. She blew too hard and the balloon exploded. It seemed as if Erika did, too. An hour later she sort of explained to her Mom that she was crying because she couldn't "undo" the balloon. All of a sudden, it all made sense in her mother's head. That is what her daughter had been doing these last few months! Erika would go in and out and in and out of her door. She would only go one way through the doors in the house, so she was always going the longest way around. Her mom thought it was just a game. While she would talk on the phone she would carefully put her hand through the hole in the cord back and forth, plus a number of other things. It turned out that the compulsions that her mother could see were just the tip of the iceberg. There were many mental compulsions, too. She would lie in bed wanting to go to sleep but couldn't until she could open this box in her mind and then shut it up just the same way. Erika usually cried her self to sleep thinking that she was obviously going crazy.

Justin-repeating and perfection

At parent-teacher night Justin's teacher showed Justin's mom his work. The teacher's question was, do you think he is doing this on purpose? When you looked at Justin's papers, it looked like they had been either hit with a shot gun, or attacked by a very vicious eraser. Almost everything had been erased over and over and over. As a result, many places were erased through the paper. Then it was folded and unfolded many times. When Justin sat down to work, he worked hard, and became more and more frustrated. However, when asked to do things orally, there was no problem. The teacher suspected a learning problem and sent him to the resource teacher. This is what finally convinced Justin to say what the problem was. It wasn't that he couldn't write or print, he just couldn't get it perfect. He knew that his first attempt was okay, but it wasn't perfect. It made him so anxious to see that imperfect letter or number that he felt he had to fix it. It turned out that at home, each sheet of homework consumed about 10 other sheets before he got it right.

Mary - hoarding

Lots of children like to collect things, and now with recycling, it is even more common. Mary started out that way and everyone at school was so happy to have her there. Mary would pick up trash, wrappers, old milk cartons, and anything she saw. She told the teachers she was bringing it home to go to their recycling. When her father saw Mary coming each day after school, he counted to 10, said a prayer, and greeted her.

" Have any home work, Mary?" Of course she did, but as she pulled the homework out of her pack, out came about a half a trash bag of garbage.

"Are you going to throw that junk out Mary?" No, not right now, she might use it to make something later on and she wanted to make sure she had it sorted properly. Mary's father knew what that meant. It meant she would squirrel away that with the rest of her trash, or collections, all around their farm.

Mary and her Dad knew what was coming next, the showdown. "Mary, you are not coming into this house until you let me have those things. "After a lot of screaming and "you don't understand", Mary would give up her junk. Each Friday Mary went to the school and cleaned out Mary's desk. She never said she did it, and Mary was afraid to ask.



The pain of OCD is hidden from most people in a child's life

While many neuropsychiatric disorders of children are partly private, a lot of the signs and symptoms are quite obvious to parents, teachers, friends, and family. If you spend a fair amount of time with a child with a mood disorder, tics, ADHD, learning disorders, ODD or conduct disorder, you will get to see plenty of signs of the disorder.

Why is this? All of us have little habits that we are far less likely to engage in out of our homes. Things like picking sores, scratching your groin, and farting are common examples. Although we might have the urge to do these in public, we can usually control it, at least until we get home. The same applies to OCD. A child who is really bugged by things being out of order at school may be able to control it at school.

Another reason is that things that family members do or do not do always bug us more than what total strangers do. Likewise a mess in my neighbors house is far less bothersome than one in my own home. So with OCD, the biggest problem is when a person is with those she loves and in her own home.

Here are some examples:

Hannah's parents are the problem

Hannah is 11. Ever since any one can remember she was very particular about how she was dressed and how things were put away at home. Now that she is in sixth grade and starting to go through puberty, this is getting ridiculous. She is spending about 1.5 hours each morning getting dressed. When she comes home she used to scream at her mom about the way the laundry was done. So her mom showed her how to do it. Hannah has almost worn out her clothes she got for school a month ago with all the washing. Can a person be sure that all the soap is really out? And is the perspiration smell really completely gone? So there are multiple washes and rinses and Hannah spends hours cleaning, drying, and inspecting her clothes. Since she can never be sure things are just right, she is angry and bad tempered. But once she finally leaves the home, she is a delight. Her friend's parents always remark on how charming and polite Hannah is. The teacher loves her and she gets wonderful grades. She is the top dancer in her dance class. Her grandmother thinks Hannah's mother is being to hard on her. Hannah's father thought the same thing until he was home for a week with a back injury. So when Hannah had to go see a psychiatrist, everyone thought the mother was crazy, not the child.

Jared reads too much

Jared has been a lucky guy. He is bright, handsome, and his family is pretty nice and quite well off. He is pretty good at sports and most people really like him. Now he is 15. One day they were doing some science report on how the lungs work and you had to count your breathing in a minute. He didn't think anything of it, but late that night he found himself trying to make sure that the amount of time he was breathing in was exactly the amount of time he was breathing out. This got worse. In school he found himself doing the same thing. After a few weeks of this little torture it spread. Now he feels he must sit down on a chair exactly straight. If he moves something on the right side of his body, he feels like he has to move the same part on his left side. No one sees any of this. He still does fine in all his activities. He is not really that irritable. He told some friends that, "he knew a kid with this weird problem...." One of them said it sounded like a show he saw on OCD. Jared looked up some stuff on OCD and sure enough, that was what he had. So he told his mom that he needed to go see their family doctor so that he could get referred to a psychiatrist to see if he had OCD. His mother couldn't see that there was anything wrong and told him he shouldn't read so much. It was just a phase. He waited until a day when there was an inservice and went to his family doctor. She heard the whole story and saw the anguish. He went to a psychiatrist and the mom and dad never did think that he should have.

Julie gets a lot of advice

Julie is 14. She has had OCD since she was a child. She has been off and on medications most of her life for it, especially when it is bad. Last spring, it was bad. She was counting, checking, washing, hoarding, and thinking that if she didn't do these things, something would happen to her mom. Plus she got depressed. Well it took a lot of work with to get her mostly well again. The medication she is taking makes her a little tired at school and also makes her a little dizzy when she stands up. As a result, she is unable to do some things in gym class and looks tired in school. Since almost none of the symptoms of OCD were seen in school, the teacher's have been telling Julie that maybe she should see her doctor about cutting down the medication. The teachers have called her mom with the same concern. Julie's aunt and uncle have also told Julie's mom that Julie is on "way too much medication" and they should get a second opinion. Even when Julie's mom explains that they did get a second opinion, the advice does not stop. When Julie and her mom talk with the doctor, they decide that these side effects are certainly worth it given how sick she was a few months ago. "Mom", Julie says, "don't make me stop the pills". Given the Hell they went through this summer, she can easily reassure Julie that she will stay on the medications. Her doctor agrees and says it would be absolutely crazy to stop her medications now. But the advice continues. Julie and her mom are doing better ignoring it.

  • These examples show some of the characteristics of obsessions and compulsions. These are:
1. OCD is a very private type of suffering. Most compulsions and obsessions are not noticed by anyone other than the person who has the disorder. What I, as the physician, see and hear about is usually just the tip of the iceberg. Often parents and teachers notice almost nothing at all.
2. It is usually depression or a crisis that brings pediatric OCD "out of the closet"
3. OCD is probably the most embarrassing neuropsychiatric disorder. The thoughts which go through the person's mind are often very embarrassing, and so are the compulsions.

[ Next: How OCD disables a person ]

[ Table of Contents ]


How OCD disables a person

It is easy to see how some disorders are disabling. For example, severe hyperactivity in ADHD is obvious to everyone. Likewise, a person who is too depressed to go to school or leave the home also has an obvious disability. In OCD, many times the type of disability is less obvious. Here are the main ways in which OCD disables a person.

Time

It can take up a lot of a person's day to obsess or do compulsions. The definitions of OCD state it must be at least an hour a day to be disabling. In reality, it is almost never just an hour. By the time most people get professional help, they are spending lots more time than that. Usually the majority of a person's waking hours are "used up" by OCD. The time that is "stolen" by OCD is most likely quiet time when nothing particular is going on - waiting to fall asleep, time by yourself, and car rides are common times.

Example-Dick

Up until this year, Dick had done fairly well in school, played basketball, held down a part time job cleaning a fish plant, and spent most weekends with his girl friend. Over the last year, he has had to let most of this go. His girlfriend found someone who had more time, he quit his job, and he stopped going to basketball. He could barely get his schoolwork done. Why? It took him about three hours to get ready in the morning, another three hours to get ready for bed at night, and a good 3 hours after school obsessing and doing rituals. Dick said he felt like a hamster going around in a wheel.

Agony

Sometimes it isn't so much the time OCD takes, but the mental Hell it puts a person through that is the most disabling. This is often the case with very embarrassing, sexual, or aggressive obsessions and also with very unusual compulsions.

Example-Curtis

Curtis used to be kind of a carefree 11 year old. Lately, he looked as if something horrible had just happened. In fact, his teacher told his mother, he looks like those pictures on TV of who are wandering around in refugee camps in Africa. Curtis's life seemed pretty nice by most standards. On the other hand, inside his head was like a war. About 10 times a day, Curtis would think that he will probably loose control and strangle someone. Some weeks it is his baby sister, sometimes it is his mom. He has never hurt anyone, but he can't help thinking about it

Obsessions or compulsions which make a part of life impossible

Sometimes certain OCD symptoms will make school, work or social life impossible. At school, having to do things over and over or having obsessive fears about masturbating in public, for example, will make it very difficult to concentrate on school. Working with the public and having obsessions about catching illnesses makes most jobs impossible. Children and adolescents who check, touch, hoard or who are very slow become social outcasts.

Example-Charnelle

After reading some books on OCD, Charnelle said she would rather wash her hands 100 times a day and check every door than have her problem. The only way Charnelle could get to school was if she wore green shoes, blue jeans, and a green sweatshirt. She washed this outfit every day and put it on clean the next. It didn't take very long for the other kids in grade 5 to start noticing this. Charnelle told no one why except to say, "it's stupid, but I can't help it". She was teased constantly and was on the verge on refusing to go to school altogether.

The course of OCD

The examples above give a snapshot at one time of obsessions and compulsions. Almost no one has one obsession or compulsion. The course of OCD shows a huge amount of change over time.

Changes in the types of symptoms

OCD that comes and goes

Some children will have one obsession or compulsion for a few months and then it will disappear. There may be no obsessions or compulsions for years, and then they might return for no apparent reason.

Example - Jody

When Jody was 6, She had a little "habit". Before she picked up anything in her hand, she would very lightly touch it once with her index finger. When her parents asked her why, Jody just said that she liked to. There were no other obsessions or compulsions. Although no one mentioned it outside of the family, Jody's mother and father became worried when Jody's little sister, age 3, started imitating this habit. They were about to go see their family doctor about this when it started to go away and never really came back. Two years later, after no signs of OCD, Jody started counting. She thought her mother, who had had a routine hysterectomy, would die if she made a mistake. She was counting and checking her counting for errors each day. Only when they were in the pediatric psychiatrist's office did they remember the "habit" she had at age 6.

OCD that comes, but never exactly leaves

A common pattern is for a person to have a number of obsessions and compulsions which are quite severe, but which then lessen, at least for awhile.

Example - Tim

When Tim was 8, he told his mother that she needed to make an appointment with their family doctor for him. " Why?", asked his mom. Tim said it was too private to tell her. His parents wondered for two weeks what this could be, but figured it had something to do with a birthmark he had on his leg that he was occasionally teased about. Well, Tim told his doctor that she had to promise not to tell his parents what he was going to say. Reluctantly, she agreed. Tim then told how he was having horrible obsessions about killing his neighbor, doubts about whether his parents really wanted him, and how each night he had to turn his head one way and then exactly the same amount the other way. Well, eventually his parents found out and after about 6 months of treatment, he was better. He only obsessed about one hour a day.

Two years later, the obsessions moved up to hours a day and he started checking and ordering everything. He again was treated for OCD and it improved again, but he was still checking things and obsessing at times three years later at age 13.

OCD that changes as fast as the weather

Sometimes the symptoms change with every visit.

Example - Rebecca

Rebecca was 13 years old when she saw a show about OCD one day when she was home from school on a snow day. She told her mom that she had this, too, and wanted to find out for sure. Her family doctor sent her to a pediatric psychiatrist to see if something could be done about the "touching problem". By the time she was seen by me 6 weeks later, the "touching problem" was pretty much gone. Well, that sounded like good news to me. "No," said Rebecca, I would rather have the touching problem any day." What do you mean?" Rebecca meant that she would rather touch than think about what she was thinking about. What Rebecca was thinking about was so embarrassing and private that I never ever heard about it until she was mostly better. Rebecca was afraid that she would start masturbating in class and not realize it. Rebecca had only masturbated once in her life a year ago. By the time we got down to discussing what the treatments were, that obsession had become milder and she was checking all the time again.

OCD that snowballs

Sometimes OCD seems to either stay the same or worsen, without any real periods of improvement. People get used to their obsessions and compulsions, but then they seem to just get worse. This is the worst course and most often is accompanied by depression.

Example - Judy

When did Judy start having obsessions and compulsions? Only in the last 10 years, she replied with a little laugh. Judy is 13. Her life has been ruled by OCD as long as she could remember. She never even thought much about it until she was 8 and stayed over at her friends house for an overnight. That was the first time Judy realized that she was different. She thought OCD was just part of being human. Well, when the other girls got ready for bed in 10 minutes and she was still getting ready for bed an hour later, she realized she was different. Judy was amazed that the other girls could fall asleep in that room with everything so "wrong". So, once Judy's friends were asleep, Judy spent the next hour tip-toeing around them and straightening books, papers, backpacks, and other stuff which was not lined up right. She then went to bed and cried. Now Judy has another fear. She has learned a lot about OCD, and is sort of sad, as so much of who she thought she was seems to be either obsessions or compulsions. She had calculated that about 15 minutes a day were free of OCD. She is glad that the treatment is working, as her life had become totally controlled by constant obsessions and compulsions. But who is she? Now that she is not totally controlled by OCD, what kind of person is she? Judy isn't sure yet.

Long term Course

When researchers follow children with OCD for years, many children still show signs of OCD 2-7 years later. About 43% of children still have the diagnosis of OCD, which means disabling obsessions and/or compulsions. About 11% had no sign of OCD whatsoever. The remaining 46% showed some signs of OCD, but not enough to make a diagnosis. It is very hard to predict who will be the lucky ones who get rid of it forever, and who will not. No factor, including age, sex, type of OCD, or insight into the illness has been proven to be a good predictor. Most researchers think, however, that comorbidity and family problems make a bad outcome more likely.

Does OCD turn into something worse?

Many people are afraid that they will go crazy when they have OCD. If being crazy means schizophrenia, then they shouldn't worry. It is extremely unlikely that routine OCD will turn into an illness like that.

How common is OCD?

Pediatric OCD usually comes on between age 7 and 12, but can come much earlier. Between two and four percent of all children have OCD. That means that in most elementary schools in our area, about 5-10 (1) children have it. It is a little more common in males than females. This wouldn't be so bad if those children were identified with OCD and then treated for it. The problem is it is not picked up. In most surveys children or adolescents, most of the children who are found to have OCD have never gone for professional help, even though the disorder is quite disabling. Sadder yet, of the few who get professional help, almost none are correctly identified as having OCD. Most are thought to have some sort of family problem. Sadder still is the fact that even when OCD is identified, most children are not given appropriate treatment.

Example-Jocelyn

Jocelyn was sexually assaulted at age 8 by a neighborhood boy who was 14. It was terrible, but she told her mother after the second time and the boy was charged and sentenced to a youth prison. Two years later, Jocelyn was doing poorly in school and seemed preoccupied with getting things done just right. She also became mildly depressed. She was seen in a local mental health centre and entered into 8 months of counseling for sexual abuse. She was referred to a psychiatrist for something to help her horrible insomnia. It came out that part of her insomnia was due to horribly complex mental rituals and compulsions. In the end, as Joceyln would tell you, the sexual assault was nothing compared to the agony she experienced from lifelong OCD.

Co-morbidity

Co-morbidity is the tendency of certain diseases and disorders to run together. For example, High blood pressure and Diabetes occur more often together than one would expect. OCD that comes to the attention of professionals in Canada is usually accompanied by some other neuropsychiatric disorder. When I initially see a child with OCD, I spend a lot of time trying to figure what else they might have. Over 75% of children with OCD will have had at least one other psychiatric disorder in their lives. (1) The most common co-morbid conditions are:

Depression

Sometimes people who are depressed develop obsessions or compulsions when they get depressed. Other times people develop depression who already have OCD. This is very, very common. In fact, the most common reason for a person with OCD to end up in our clinic is not OCD, but depression. It seems that they can manage the OCD as long as they don't have to battle depression, too.

Disruptive Behavior Disorders

This includes Attention Deficit-Hyperactivity Disorder, Oppositional Defiant disorder, and Conduct disorder. Lots of times one disorder or the other is the main problem. The other less noticeable disorder isn't really noticed until the first one goes away. Having Oppositional Defiant Disorder along with OCD can make treatment of OCD very, very difficult.

Example - Christian

Christian was hyper ever since he could walk and no one ever doubted the diagnosis. However, he responded well to some simple behavioral interventions once he reached school age. At age 8 he developed a ordering compulsion that took over his life for two years. Not until his OCD was under control did his ADHD become a problem again.

Anxiety Disorders

OCD is one of the anxiety disorders, but there are a few others. It is not uncommon to see a child with 3 or 4 anxiety disorders. These include panic disorder, numerous phobias, generalized anxiety disorder, and Social phobia.

Learning Disorders

All of the learning disorders are more common in children with OCD than in children without OCD. It is important to be aware of these, especially when you are trying to teach children about the disorder and design a treatment program.

Tic Disorders

Tics are sudden movements of the body that last only a few moments. They also can be sounds. Some are simple, like blinking, while others are more complex, like clearing your throat and then twitching the head. These are very common in persons who have OCD. Approximately 55% of people with OCD have had tics at one time or another during their lives. About 15% of those with OCD have Tourettes Disorder, which is tics to a disabling degree. The cause of OCD and tic disorders is probably the same (see below).

OCD spectrum disorders

There are a number of psychiatric disorders that are like OCD, but not exactly. Nail biting and hair pulling (trichotillomania)) are two that are more commonly seen in children. More rarely pediatric OCD is accompanied by Body dysmorphic disorder, where a person is obsessed with one part of the body being somehow extremely ugly, fat, or deformed.

What is the cause of OCD?

Until the last 15 years or so, many people thought that there was some deep and dark secret in the minds of people who had OCD. When it did occur in children, it was assumed to be due to some family problem or difficulty in growing up. We now know that while these can affect OCD, OCD is not caused by this sort of thing. OCD is about as physical as Diabetes, Asthma, and other common pediatric illnesses. In fact, there is more known about the physical causes of OCD than most other neuropsychiatric disorders. At this point, most of the evidence points to two causes of OCD, genetics and infections.

Genetics

OCD runs in families. About 30% of teenagers with OCD have a relative in their immediate family with OCD or some signs of OCD. When OCD appears early in childhood, it is even more likely that there will be family members with the disorder. (1)Other studies have not found as much OCD as this in relatives, but have found lots of other anxiety disorders besides OCD in the relatives. In families where OCD seems to be inherited, often times tic disorders are found, too. The usual pattern is for the males in the family to be more likely to have tic disorders and the females to be more likely to have OCD. However, the opposite is not uncommon. These studies show that OCD runs in families, but it doesn't point to an exact cause. Other studies do point to certain problems in the brain.

Imaging

Many people have heard of CT scans. They are very fancy x-rays of the brain. There are some other tests which can be used to investigate the brain which are like CT scans. These include MRI, PET, and MRS. These pictures of the brain show that children and adults with OCD have some abnormalities in the brain. They involve the part of the brain above the eyes (Orbital area), and some of the structures that are deep down in the brain (Basal Ganglia and Thalmus). This research suggests that somehow the communication between these areas is not right in OCD.

Chemistry

It is not uncommon to hear people say that someone has a "chemical imbalance" in their brain. A lot of work has been put into trying to determine if there is a chemical imbalance in OCD. There is quite a bit of evidence to suggest that one chemical messenger, Serotonin, is very involved. All the drugs which help OCD affect this chemical messenger in one way or another. Tests of the spinal fluid also suggest that this chemical is involved. Unfortunately, the more scientists find out about the chemistry of OCD in the brain, the more confusing and complicated it gets. Five years ago, we didn't know that Serotonin can attach to nerve cells in the brain in many different ways and cause a host of different things. Although we know Serotonin is involved, now the question is which part? Is the problem one of the ten or so plugs or receptors that Serotonin attaches to? Is the real problem another chemical? Where in the brain are these Serotonin receptors messed up, if they are? Although a lot more is now known about what causes OCD, scientists are still a long way from having the final answer.

Infections

One way of learning about what causes OCD may easily come from some research in the last couple of years on how infections can cause OCD. Many people have heard of Rheumatic fever. This is a heart disease that is caused by a person getting Strept throat and then in the process of fighting off the infection, the person's body starts confusing the cells on the heart valves with the strept bacteria. So the person's body attacks the strept bacteria and the heart valves. As a result, the heart valves are damaged. It has been known for years that the same thing can happen in the brain. During the course of a strept infection, a person's infection fighting system confuses strept and the outside of nerve cells in the brain. As a result, the person's infection fighting system attacks the strept and also certain cells of the brain. This is the same part of the brain, Basal Ganglia, which has been found to be part of the problem in OCD. People who got this have something called "Syndenham's Chorea". They have a movement disorder which was sort of like tics. Then researchers found out that they had a lot of OCD symptoms, too. Now it has been discovered that some people who have this problem with their infection fighting system attacking their brain will not get a movement disorder at all but just very severe OCD. The signs and symptoms can be just the same as the genetic variety. It usually comes on very suddenly. Usually it goes away after awhile. Sometimes it happens in a person who already has mild OCD. It has a strange name. It is called PANDAS. This stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. No one knows how often it occurs, but everyone agrees it is quite rare. The big question right now is what to do about it and how to diagnosis it. On one extreme, some doctors give something like kidney dialysis if they think a person has this. Others give penicillin. At the moment, if I see someone who has signs of this, I do some lab tests. If they were positive, I would get a few more opinions. What is reasonable to do for this seems to change every few months right now.

Example - Jonathan

Like half the kids in his grade 2 class, Jonathan got sick this winter. His sister got Strept throat, so did his brother. Jonathan only missed a few days of school and never ended up taking any antibiotics, as he wasn't very sick at all. Two days later he could not sleep for anything. He could not fall asleep. He would come into his parent's bed crying about "bad thoughts" that wouldn't stop. During the day he was exhausted. He started washing his hands over and over trying to get something "bad" off of them. He went to his family doctor and an appointment was made with a psychiatrist in a few weeks. By the time the appointment came, these problems were almost gone. They canceled their appointment. This is a disguised version of the closest thing I have seen to PANDAS.

Diagnosing OCD

Like all neuropsychiatric disorders, OCD is diagnosed based on the history, physical signs, and lab tests. There is no lab test that will show that a person has OCD. There are some that are highly suggestive of PANDAS.

History

When I talk to children or teenagers or their parents about OCD, I want to ask them about all the different obsessions and compulsions. I also want to ask them about all of the co-morbid disorders, especially other anxiety disorders, depression, and tics. I want to know how the disorder started and what has been done to treat it.

Exam

The only part of the physical examination that is useful is the part which is done to look for tics. Other wise I am looking for signs of OCD - trouble managing the disorder in my office, touching things, having to enter a certain way, and preoccupations with certain themes. I also want to see how depressed they are.

Lab

I only get lab tests done if there are some unusual features to the history and examination. I also get lab tests if I suspect PANDAS.

Mistakes in diagnosing OCD

Missing OCD

This is the easiest thing to do. Unless you specifically ask, most people won't tell you about their OCD symptoms. It is just too embarrassing. Often another problem, like depression or ADHD, gets diagnosed because it is the most obvious. The solution? Every child and their parents should be asked a few screening questions about OCD.

Diagnosing OCD when it isn't there

The most common error here is diagnosing OCD based on obsessions or compulsions, but forgetting to check and see if they are disabling. Many children and adolescents have obsessions that are certainly unusual, but not disabling them in any way.

The other error of this type is missing some other physical cause. Rarely, things like epilepsy, eating disorders, psychosis, Autism, head injuries, tumors, and poisons can cause OCD. Of all these, tumors are the most worrisome to most people. Tumors may initially present with just OCD, but within a short time, other neuropsychiatric symptoms become prominent. If a person has a normal neurological exam and a classic OCD history with a family history, It is not worth worrying about. However, in an atypical case with other neurologic signs, it is a concern. Obviously such children will get a much more aggressive work-up with labs and x-rays.

[ Previous: What is OCD? ] [ Next: Treatment ]

[ Table of Contents ]

 


Treatment

There are three categories of treatments for OCD.

1. Treatments which have been carefully researched and have been found to be effective. This includes cognitive-behavior therapy and medications.

2. Treatments which have been studied some and are useful in certain circumstances. This includes family therapy, relaxation techniques, and surgery. These are not of interest to the general reader and I have not included information about them.

3. Treatments that have not been carefully researched but are still used by people anyway. This includes diet and nutrition therapy, psychoanalysis, all sorts of other psychotherapies, group therapy, and many, many more. Many of these treatments in this third group may be effective and they may be safe, but I don't know. Usually I don't know because there isn't enough careful scientific research on the treatment. The fact that something worked for OCD in 10 people in one clinic doesn't mean it is time to try it on others outside of a research setting. Sometimes I don't know about the treatment because it is just too new. Then my approach is to find out, or find someone who I respect who knows.

That leaves us with the first and main category............................................

Treatments which have been carefully researched and have been found to be effective.

Cognitive Behavioral Treatment and Medication

Recent Studies have shown that the most effective treatment for severe OCD is medication plus Cognitive Behavioral treatment. Using both treatments together, 53% of children with OCD had minimal symptoms after 12 weeks of treatment. Only 39% improved to this extent Cognitive Behavioral Treatment alone. Medication alone led to only 21% having minimal symptoms after 12 weeks. Looked at another way, the improvement with both treatments was about double that seen with either treatment alone.  The children in the study were quite ill and many had comorbid problems. (6)

This study suggests that for ill children, Cognitive Behavioral Treatment and Medication is best. For mildly ill children, Cognitive Behavioral Treatment is worth trying.

Rarely is medication alone worth trying.

1.                       Cognitive Behavioral Treatment

Cognitive behavioral treatment of OCD is based on two principles, exposure and response prevention. It is a "doing" treatment, not an understanding and counseling treatment. It involves a lot of homework.

Graduated Exposure

This means exposing yourself to the thing that makes you anxious. For example, if a person is having disabling compulsions to order things, they might expose themselves to clutter for five minutes without touching anything. A fear of germs might be treated by touching a sink in a public washroom. In a sense, it is facing the thing you fear a little bit at a time until you have finally conquered it. Sometimes, people start by just imagining they have exposed themselves to something.

Response Prevention

This is preventing a person from doing a compulsion or mental act. If you are a checker, it means preventing yourself from checking things by having someone with you or a physical barrier. It may mean at first just preventing yourself from checking for a short amount of time.

Cognitive Treatment

This works on what a person is thinking, not what they are doing. When you are doing cognitive therapy, you are learning what thoughts you are thinking and then learning techniques to control these thoughts. A common one in the treatment of OCD in children is labeling these OCD thoughts as not your own. This technique is used to encourage children to talk to their OCD as if it were a bad guy. For example, a girl who kept obsessing about getting AIDS would be taught to label these thoughts as from the OCD , and not her. Then she would learn some ways to tell these thoughts to "get out of town". Other techniques involve thought stopping, were you do something physical to stop obsessing which you have learned in therapy, like snapping a rubber band on your wrist ever time you start obsessing. This is a hard thing to describe without examples.

The type of Cognitve Behavioral treatment that has been found to work best is manual based. That means the therapist and the patient follow a workbook. There is homework to do, parents are involved, and it is very structured. The best resource for this is a book by John March published in 1998 by Guilford Press called “OCD in Children and Adolescents: a cognitive behavioral treatment manual”. There are many other reasonable manuals, too.

Examples

Like most things, the best way to understand Cognitive behavioral treatment is to see how it works with examples. Here are those same ill children from the first section and how they could be treated with a combination of exposure and response prevention and Cognitive therapy. Click on the child's name to go back to the example.

Jonathan - unlucky numbers

The treatment began with Jonathan making some large "9s" on four papers and putting them up in the office when he was seen. The therapist talked with him about how he felt and how he might try to manage this with deep breathing, and saying certain thoughts to himself. The homework was to go home and make some more 9s and hang them up in your room and see if your temper went out of control. The next home work was to draw with a pen a 9 on your hand for a day. The next homework would be to make a small light pencil 9 on the back of every worksheet that you do. With each step, Jonathan's parents were involved and were there to help him from getting anxious using some relaxation techniques like deep breathing and thinking of something relaxing. This was exposure.

The cognitive therapy involved talking with Jonathan about how exactly his temper was going to go out of control, what exactly he thought he was going to do to people, and how unlikely that really was. Then Jonathan was taught to say something over and over which he came up with himself. So he came up with, "I have never beat up anyone and I never will". When he was exposed to 9s, he would say this, he would also imagine these words as missiles which were blowing up the attacking OCD spacecraft.

Jonathan did all this and it worked to a certain degree. He never did draw the 9s on his hand or paper. He thought that was just too "risky". However, he really got into the idea of "shooting down" OCD spacecraft, and that was enough for him to stop avoiding 9s and get his marks back up.

Kim-Sexual

Since Kim was only 9, her parents and I thought exposure was pretty much out! We came up with a counting exercise that she could use to prevent her from thinking of these things. Every time she started thinking these things she would count backwards by 5s from 100 and take deep breaths. I also tried to get her to label these thoughts as bad thoughts that were from the OCD and thoughts which she didn't really want to think. Kim loved dogs and so we got her to use the same analogy with the OCD. The OCD was a big dog she was taking to obedience school. We worked on her saying, "Down, OCD, "sit" to the "OCD" dog. Well, her mom and I thought this all sounded pretty good. She started counting and the obsessions disappeared. Unless of course she thought she made a mistake counting, then they would come back! So we had to change things around again. Labeling the thoughts as not hers helped only a little. In the end, we worked at this for about two months, but the obsessions kept changing and we weren't making any progress, so we decided to add medications to the treatment.

Richie - Counting

Although Richie loved to count, some things he had to count. To start with, Richie went out with his dad on the wharf. They counted the boards on the way out to the boat. Richie counted them once, but wasn't sure. He was able to then leave the wharf with his dad without counting and go home in the truck, having never properly counted the boards. It made him nervous, but he was able to do it. After a few tries at that, we picked something that was a little more difficult. We picked steps in the house. Richie was almost sure there were 40 steps, but never absolutely sure. So, between Richie, his Dad , we started a little race. Richie and his Dad would start at the bottom of the stairs each afternoon. His Dad would say, "Go!" and they would both run up the stairs as fast as they could saying, "OCD can't get me" . Who ever got to the kitchen counter first grabbed the loonie that was there. If Richie did this every day, he could get 14 dollars by the time I saw him next.

That worked pretty good. The confidence this gave him really helped when we took on some more of his counting problems at school. There we had him go and do similar things with his Dad after school initially, and then eventually during school. He would sing a song in his head the whole way down the hall instead of counting. In class, every time he started to want to count, we worked out a little substitution game. He would grind his foot into the floor as if he was grinding OCD into the floor. These things worked well for Richie, and he never relapsed or got other symptoms of OCD.

Ashley - disease

When I discussed the idea of exposure and response prevention with Ashley and her mother, Ashley wouldn't do it. She wondered how doing these things was going to make her think about AIDs less. She was convinced it would make her think about AIDs more. She also thought at times that we were just suggesting this because we didn't want her to know she really had AIDs. Only sometimes did she see this as a goofy idea. So, I gave up. She agreed to take medications, because she thought maybe they were for AIDS and we just weren't telling her.

Andrea - did I do something horrible?

When Andrea and her dad came back for their appointment, they had already figured out a good program for treating this doubting. The next day, Andrea and her Dad went out driving together. Her father just rode along. They drove to Yarmouth right at noon hour and went past kids, schools, and quite a few dogs. Andrea would ask her Dad, "Do you think....?" Her Dad just answered, "I don't know". When she would pull over and want to turn around, then her Dad got more involved giving her a pep talk about beating OCD and not letting your nerves ruin you. Well, that was one noisy car! They did this every day for a week and by the end of the week, she pretty well had it. She never pulled over any more but still had the thoughts to a certain degree. The next assignment is she drives alone and her Dad times her, knowing that if she is late it means she is checking. It will also mean she buys the gas for a week.

Ann - mental acts

There is usually no way to do exposure when people have pure obsessions and mental acts. We tried having Ann make the shapes she sees in her mind and then not cut them in half, but it didn't bother her at all; it was not at all close to the real thing. We tried having her not do this obsessions for just a minute, but she just couldn't control it in the slightest. We tried thought stopping and labeling this as OCD, as mentioned above. It didn't work. She went on medication and improved dramatically such that she never did have to use any of these techniques.

Darrel - order, evening up and symmetry

It was a good time of year to try therapy with Darrel, as his dad was gone every day lobstering. In co-operation with his mom and Darrel, we came up with a plan. First we would try having him leave just one thing out of order and see if his Dad came home safely. Then we would try another and another until he was leaving things quite out of order. At the same time, his mom would limit the time he could spend in his room by 15 minutes every week. That meant this week he could only spend two hours in his room. So, off they went ready to do this. By the time the next day rolled around, Darrel had changed his mind. He did not want to co-operate. He went in his room and refused to come out for three hours. His mom was not big enough to force him to come out and no amount of rewards or punishments would either. When they came back we agreed that even though we wanted Darrel to get better, Darrel didn't. Darrel refused to see me again. In the end, when faced with repeating a grade and being in the same class as his younger brother, he did do less ritual ordering, but not that much less.

Kelly - doubt

After we had discussed what OCD was, Kelly, her mom, her boyfriend, and her boyfriend's mom all came in. We decided that Kelly would be allowed a certain number of "doubts" a day. If she went over that, no one would answer her. Kelly picked the number to start with, 30. So the first week she asked the above people about 35 times a day, but they didn't answer after the 30th. Since they all lived on the same road in the same village, it was easy to coordinate. Each week the number of "doubts" she could have went down. At the same time, we worked on substituting. When she was tempted to ask questions about whether or not he loved her, we trained her to either say, "I Love Gary" or, if he was there, say that to him and give him a kiss. Three months later, she was completely better, but still had these thoughts occasionally. She never told anyone, not even her boyfriend.

Deb - religious

When Deb got to the hospital, she was very, very angry. She did not believe this was something that was medical in nature. This is between me and God, she would say. Even in the hospital she spent hours praying and obsessing. So we brought in her priest and talked to him about OCD. He knew about it anyway. So he tried to explain this to her and reluctantly, she agreed to treatment. She refused any medications. The treatment consisted of her initially playing ping pong on the ward with the priest for 15 minutes each day. This was under the condition that she try not to pray at the same time. Each day another activity was added. If she was obviously obsessing, then the priest would not visit. Things were not going great after a few days, but looking better. That night Deb cut her wrists with a light bulb. It was not serious. She said she knew she would never be better and would be going to Hell anyway, so why not suicide? Eventually, Deb agreed to take medications, which thankfully worked and she was discharged to home. Deb still attended Mass almost daily, but she was able to function in other parts of her life without any problems.

Sean-Cleaning rituals

Cleaning rituals are usually one of the easiest things to treat with behavior treatment. Part of the treatment involved response prevention. That is, we didn't want him to wash his hands so much. But before we could do that, we had to get an accurate idea of how often he was cleaning his hands. So, there was a sheet taped to the door where Sean could make a mark for each time he went in the bathroom. Even Sean was surprised at the number of times he was there in a day - about 30. Sean's mom bought a little timer for cooking which went off in 2 minutes. When Sean went into the bathroom (his parents bathroom was now to be locked) his mom turned on the timer. In 2 minutes, she called out, "2 minutes more!" and set it one more time. Then she came in the bathroom, which now had no lock from the inside, thanks to Sean's Dad. Then she would ask him to come out. If he didn't come out, he went to bed early. If he still didn't come out, no video games for the day. If he still didn't come out, she would call her husband to bring him out. It never came to that at all. At the same time as this was going on, Sean worked with his Mom on not washing his hands after touching certain things that other people touched. It started with chairs, but was eventually to move to toilet seats. He was to first go one minute, then two minutes then more without washing. This second part never happened. The timer in the bathroom did the trick. Over a month's time the hand washing went down to 6 times a day. Now, six months later, when Sean starts to spend more time in the bathroom, all his mom has to say is, "Sean,. do I have to get that timer out again?" and it stops.

Rob-Checking

Rob was pretty motivated to stop checking. The first thing we did was to come up with a list of his "top ten" checking. It turned out that his fly was at the top of the list. So we started with one that was not such a big deal, light switches. The plan was that he would go out of a room with his older brother (20 y.o.) and Rob would turn off the lights once, and then the two of them would leave. At first for a short time, then a longer time. At first with his brother, and then alone. Well, it was a breeze, because that compulsion was basically gone by the time we got things set up to get rid of it. Same thing with checking his fly, by the time we set up a program, that checking compulsion was gone, too. Unfortunately, new obsessions and compulsions were coming up all the time and there was not a lot of stability to the symptoms. After a month of chasing compulsions, we decided to try medications.

Common questions about cognitive behavioral treatments

How often?

Usually a person will be assessed and then given some homework. They will be seen briefly every couple weeks at the maximum to see how it is going.

How long?

Usually three months is a long enough trial with pediatric OCD to tell how things are going to go. If a child has been doing their homework and really trying and is not better in two to four months, it is time to think about medications. If behavioral treatments work, the child is seen until the OCD is not disabling anymore. Then the child is seen less often, like every few months for a year or so. Rarely do people do behavioral treatment intensively in Canada with the aim of getting rid of all signs of OCD.

Can you do cognitive behavioral treatments and medications at the same time?

Definitely yes. Most studies have shown that the most effective treatment for OCD involves behavior treatment and medications. Also, you have a better chance of getting off the medications and not relapsing if you have learned behavior treatment.

If you are taking medications and doing behavioral treatment and you get better, how do you know which one helped?

You don't. This is a nice problem to face - why am I better? When both treatments are given and there is improvement, I usually continue both for about a year and then stop the medications (see below on this point).

In summary

This gives you an idea of how cognitive behavioral treatment works and doesn't work in OCD. Overall, about 60-70 % of children will improve with this treatment. To do this type of treatment, a child has to be motivated to do the homework, believe that she or he really needs help, and be patient enough to wait a while. In children, the behavioral techniques are used more frequently than the cognitive ones. However, making the OCD into something that the child is fighting sometimes works well. The other good thing about behavioral treatments is that people have a great sense of accomplishment if they can get better without medications.

To do behavioral treatment you need:

A motivated person who wants to get better
A family which is willing to help
Dedication to work on homework even though it is hard and slow going
A professional who knows how to do the therapy

Medications

Introduction

The medications used for OCD are the same ones that are used for severe depression and other anxiety disorders in children and adolescents. These drugs all affect serotonin, a chemical in the brain which is used to communicate between different the different parts of the brain. We don't know exactly how this works yet. We do know one thing for certain. If a drug has no effect on the serotonin system, it won't be effective alone in OCD. At present, there are five drugs in this group. The are Prozac (fluoxetine), Paxil (Paroxetine), Zoloft ( Sertraline), Luvox (fluvoxamine), and Anafranil (Clomipramine). All of these drugs have been used in pediatric OCD. Clomipramine has been used the longest.

General approach to medications in pediatric psychiatry

There are three principles to make sure you do things safely and carefully in this area of medicine

Start low

All of the drugs we use in pediatric psychiatry can actually cause unwanted psychiatric signs or symptoms as side effects. It is impossible to predict ahead of time who is going to be very sensitive to these drugs and who isn't. If you start someone on a high dose of a drug and they are very sensitive to it, they will have a lot of side effects. This could be dangerous. It might convince a child or family not to try medications again. Furthermore, it might have been effective it you had just started out with a small dose. If some one is very sensitive to medications and you start low, you have a manageable amount of side effects or good effect. If they aren't particularly sensitive to medications, then you usually see no effect. That's just fine. I start drugs at a dose which will probably do nothing good or bad in 90% of children. That way I can pick up the 10% who are very sensitive.

Go slow

If you have a severe infection, you want to get a lot of medicine in right away. The same is true with some other serious diseases. It is not true in pediatric psychopharmacology, for the most part. Most of the time, if a person has OCD, he or she has had it a long time and waiting a little bit longer isn't going to make that much difference. Lots of children will tolerate these drugs if you slowly increase the dose, but not if you quickly increase the dose. It is safer and a lot easier to figure out what is going on if you "Go slow"

Monitor

No drug is completely safe. There are things that need to be watched for with every drug, and these drugs are no different. What needs to be checked depends on the drug. For monitoring to be effective, both families and the doctor need to know what can go wrong. This is especially true of the psychiatric side effects. In some cases, these drugs can make an already anxious person more anxious and restless. You need to know if this could be a possible side effect of the drug. The doctor should have enough experience with the drug in your child's age group to know what to look for. Almost all the horror stories about these drugs involve either a physician or family or both who were not monitoring things carefully.

What are these drugs supposed to do and how fast do they work?

In adults, when these drugs work, which is 60-80% of the time, they do not work overnight. Usually a person will see a change in the first month, but sometimes a person can have no change for 6-8 weeks and then start to improve. However, some recent work suggests that they may work faster in children. A very large study of Fluvoxamine (Luvox) in children with OCD showed after only one week there were signs of improvement and most of the improvemtn was seen within the first three weeks. (5) In some people, the obsessions and compulsions just start to drop away. In other cases, the obsessive thoughts still go through their mind, but only to a mild degree. In other cases, the medicines just make it easier to do the behavior treatment. Sometimes they help certain parts of OCD and not others. Sometimes, of course, they don't do anything at all for OCD.

How long does a person take them?

At a minimum, six months. If a person has been very ill and it has been a real battle to get them better, I usually advise they take medications for 12-18 months. Either way, we try to discontinue medications in the summer when school is out. When we discontinue medications a couple of things can happen:

Nothing

The person does just as well off medications as on. That is the best sign. Overall, about 50% of people will be able to do that.

Worsening right away

The child gets worse over the next few weeks. In this case we put the child back on medications for at least another year.

Worsening later on

Sometimes a child will do well off medications for a few months, and then have a worsening of OCD again. We then restart the medications for another year or so and then try discontinuing again.

Of the children I see, that is the more severely ill, at least 50% can not get off the medications without relapsing. There is no danger in this, as these drugs do not have any long term side effects.

What are the Drugs and their side effects?

These drugs are really in two families that are quite different. Clomipramine is one family and all the others are in another.

Drug

Brand Name

Usual Dosage

Sizes

comments

Fluoxetine

Prozac

About 1mg/kg

10, 20, liquid

Long acting

Paroxetine

Paxil

20-60mg a day

10, 20, 30

Worse withdrawal symptoms

Citalopram

Celexa

20-40mg a day

20

New in 1999

Sertraline

Zoloft

3mg/kg max

25, 50

capsules

Fluvoxamine

Luvox

3mg/kg max

50, 100

Pills are scored

 

Clomipramine (Anafranil)

This drug can have a lot of side effects. It was for this reason, in part, that researchers started using the other drugs mentioned above. The side effects are of two types , nuisance and serious

Nuisance side effects with Clomipramine

This drug can frequently can cause dry mouth, blurred vision, tremor, constipation, extra sweating, weight gain, rapid pulse, sedation and a rash. Some people will have none of these, some will have many. You don't know until you try which is why you start low, go slow and monitor (see above) Most children will have some side effects to this drug.

Serious side effects with Clomipramine

If there are high levels of this drug in your body, it can cause unusual and sometimes dangerous heart rhythms. It can cause seizures in some children. It is quite lethal in overdose.

So why on earth would anyone use Clomipramine?

This is not a first choice drug for OCD. However, some times a child will not respond to other drugs. Sometimes a person tolerates this very well. Sometimes the side effects are a problem, but the child is so much better it is worth it.

Managing and monitoring Clomipramine

This drug can effect the heart. That means some special things are done. Before the drug is started an EKG is obtained. Then the drug is started at a very small dose and slowly increased. Then another EKG is checked. Once those results are back, then the drug dose is increased, if they are normal. As the drug dose is increased, the ECG is checked again. Besides this, on every visit the I check the weight, blood pressure, and pulse. I also check for a tremor.

Example:Robin- touching

Robin weighs 110 lbs., which is about 50kg. these drugs are usually given by milligrams per kilogram. Robin had been tried on behavior treatment plus two other drugs which did not work. So now she was starting on Clomipramine. First we got an EKG and it was normal. The drug was started at 25 mg a day. Over the next week we increased it by 25 mg every four days until she was taking 100mg a day. Then we checked an EKG. When I saw her, I checked her pulse and blood pressure. It took two weeks to get the EKGback from the lab so she just kept taking this dose. She had only a little dry mouth and bright lights bothered her a little (this drug can make your pupils bigger). the EKG came back and was normal. We could have increased it further, but Robin was really starting to improve. She never had any serious side effects and her OCD basically disappeared.

Other Serotonin Reuptake Inhibitors (SRI)

All of these drugs have been tested in OCD in children. However since Celexa is new, there is only one study of this medication in the literature (3) These drugs all have the same side effects. However one person might tolerate one drug very well but not another. Likewise one might work, but not another.

Nuisance Side Effects of SRIs

Insomnia, nausea, vomiting, diarrhea, cramps, headaches, occasionally sedation, tremor, weight loss. Most children have very few side effects on these drugs. Almost everyone can find one in this family of four that they tolerate.

Sort of serious side effects of SRIs

Severe restlessness, agitation, decreased interest in sex, no orgasms, erection problems.

Drug Interactions

The drugs in this family can change how much of other medicines get into your blood stream. Other drugs can also change the amount of these SRI medications in your blood stream. What can happen? Here are the possibilities:

If you start taking a drug that interacts with the SRI, the amount of the SRI in your blood could go up enough to give you more severe side effects.

If you start taking a drug that interacts with the SRI, the amount of the SRI in your blood could go down and you could become more psychiatrically ill again.

The SRI can result in another medication going up in your system, too. If you were taking other drugs while you were on an SRI, those other drugs might give you more side effects.

Unfortunately, the SRIs are not similar in this regard. Each one has different medications which it interacts with.

Example: Tina has a cough

Tina is 11. She has been taking Prozac now for about a month and she is a lot better. But she has the flu which is going around and so her mom went to the drug store and got some cough syrup. Tina took the cough syrup and got very, very confused. Her mom (already nervous) was worried that Tina was getting meningitis. She took her to the hospital and was glad to find out that it was a drug interaction between dextromethopham, the main ingredient in cough syrup, and Prozac. Still, it took Tina about a week to get over this. (4)

This does not mean that these drugs are dangerous. It does mean that if you are taking an SRI, a doctor should make sure that it will not interact badly with other drugs you might be prescribed . It also means you should check with the pharmacist before you take anything. (2)

Serious Side effects of SRIs

None! These are safe in overdose, they don't require any special monitoring. No EKGs, no blood pressure, no blood levels. In very rare cases, they can produce unusual movements, but these go away once the drug is stopped. However, this may take a few months. No one knows exactly how frequent this is. Probably around one in 10,000.

Managing and monitoring the SRIs

Since these drugs have similar side effects, there is no certain reason to start with one rather than another. These drugs need to be taken with food. The following examples show how they are used.

Randy-slowness (Managing sleep disturbance due to medication)

Slowness can be very hard to treat with behavior treatment, which is why we started Randy on medications right away. We started Randy on Sertraline (Zoloft) because it worked well in his mother for depression. Randy started with 25 mg and worked up to 150 mg a day, which is about a 3 mg/kg. He went up by 25 mg every few days. He always took it on a full stomach except once. That episode of stomach ache convinced him he should never take it on an empty stomach again. Well, two months went by and the dose was increased to a maximum of 300 mg a day and he kept tolerating it well, but it did nothing. So, we stopped that and switched to Paxil (paroxetine). We started with 10 mg a day and slowly increased to 50 mg a day. Well, it worked real well. Randy was able to do more in a day than he had done in a week before. Unfortunately, he didn't sleep. He started getting crabby as his sleep went down to four hours a night. So, since he was doing well , we adding a medication called Trazadone, which is used for sleep disorders in children. It worked and he has done well.

Erika- doing and undoing (tolerating one drug, but not another)

So after trying some cognitive behavioral treatments, Erika gave up. She was getting quite hopeless, so we started her on Luvox, partly because the family didn't have a lot of money and I had a lot of samples of this. Well, she only took it once. Even though she took it on a full stomach at only 25 mg size, She had diarrhea all night and nausea the whole next day. She missed two days of school. It was another month before she was ready to try another of "Dr. Chandler's poisons". This time we tried Prozac, as it is the cheapest of the group. We got her up to 40 mg a day and she had no side effects and enough improvement in her OCD and depression to get by through the school year. She is thinking about doing the behavior modification treatment again, next year!

Justin-repeating and perfection (having to try a few drugs to find one that works)

We first tried behavior treatment alone on Justin, because it was easy to engage him in trying things like purposefully making messy letters for a few minutes and then not erasing. Unfortunately, One day after he and his resource teacher were working on their OCD assignments and his mom had a car accident in the snow. She wasn't hurt. Justin started obsessing that this was his fault and it came out that he thought bad things would happen if he didn't do things just right, and now this accident had "proved it". He would not consider behavior treatment. So we started him on Zoloft. We slowly increased the dose from 50 to 250 mg a day over a month. He had no side effects except an occasional headache. There was also no benefit. After two months more, he was just as ill. So we tried Luvox. It made no difference either after a two month trial. Justin kept saying, "I told you these pills aren't going to help". So we started him on Anafranil instead. He had severe blurred vision, constipation, and trouble urinating on only 20 mg a day. So, we decided to try Paxil. With in three months he was 100% better. But then the question was, was it the Paxil or did the OCD go away on its own? He will find out in another 6 months when we discontinue the drug.

Mary - hoarding (compliance)

Mary was placed on Prozac to start with and the dose was increased by 10 mg every week until she was taking 40 mg a day. She gradually improved. She stopped picking up junk, and with only a little bit of protest, would throw things away. One day she came up to her mom and said, "how do you think I am doing? "fine", her mother answered. Well, that just proved to Mary she didn't need to take any medication. She had been spitting out her medication for three days. I tired to explain to Mary that this did not mean the drug wasn't working, as it takes longer than that to see a change. She refused to believe me. She stopped taking the medication and did fine for four months, and then started to relapse back into her old ways. She still would not take her medicine. All the progress she had made was lost. Almost a year later she finally decided to take it, but still said she didn't need it for OCD, which she still denied she had. She admitted she was depressed, and said that was the only reason she would take it. She did, and improved. No one ever says that her medicine is for OCD, too!

Judy - (a very difficult course)

Judy started doing behavior treatment and taking medications. She started with Prozac. She showed minimal improvement with the behavior treatment. Over a year, she had a 12 week course of Prozac, Luvox, and a combination of Prozac and Anafranil. She tolerated all of these, but never improved. She was getting pretty hopeless about anything ever working. Her doctor, Judy, and her family decided they would try one more medication treatment and at the same time set up a second opinion. Judy started on Anafranil as the only drug. She had bad constipation which required laxatives. She had blurred vision and she sweated very easily if she did anything. For most people, these side effects would have been too much to bear. The EKG, heart rate, and blood pressure were all okay. She got up to 250 mg a day and was about 50% better. Again, that isn't great, but it was the best she had ever felt in her life. She is still going to get the second opinion.

For balance, I should give an example of someone who never improved on medications, even after consulting other physicians and trying everything. I actually have not seen that. It occurs, but it is very rare.

In summary

Medications can be very effective in OCD. They also can cause problems. As long as the patient, family and doctor understand what they are doing, they are quite safe.

Treating Co-morbid OCD

When children have OCD it is very unfortunate. However, I rarely see those children. Usually by the time I end up seeing someone they have at least one or two other co-morbid conditions. It is not uncommon for me to see a child with ADHD, depression, OCD, and social phobia. Here is how I approach the treatment of those cases:

1. Figure out what is causing the most disability at this time.

Sometimes OCD is present, but since the person is suicidal from depression, it is hardly the main focus. Sometimes it isn't any one thing but everything together. Then we go to the next step.

2. Determine what is most treatable.

Some things in pediatric psychiatry are easy to treat. Others are not. Sometimes one treatment will work for a couple of problems (the same drugs that are used for OCD are also used for depression and social phobia). I am always looking for the simplest treatments that will affect the most symptoms.

3. Determine what is possible and impossible for each child and family

Usually I find that one type of treatment or another will be just ridiculous given the family and the child, even though it is clinically indicated. If you are a 100 km away from the nearest person who can help your child do behavior treatment and you don't have a car, that type of treatment is probably out. If one parent is dead set against medications, that is obviously out.

4. Use as many different modalities as is possible

Every study of the long term out come of psychiatric disorders has found that the more diagnoses that a person has, the worse the outcome. That is why if people have OCD only, I will quite willingly try to just do behavior treatment for a while. However, if they have other diagnoses, too, then I highly recommend doing everything, including medications. This is similar to the treatment of cancer. The best results are with surgery, chemotherapy, and radiation (for example), not just one type of treatment.

Support Groups and information

OCD can be a very painful experience. It can be a great thing to communicate with others who have the same problem. It can also help you decide what to do about it. Sometimes, there are OCD support groups in an area. There are none in southwest Nova Scotia. However, that does not mean all is lost. There are many groups on the internet where people who have OCD can discuss things back and forth. In some ways, these can be better than "live" support groups. You can just "listen" and not participate. You can participate anonymously.

There are many books, videos and newsletters about OCD. The best source I have found by far is the OCD foundation. It is in the USA. Click below to go to the OCD foundation site

OCD

In Conclusion

OCD can be a very disabling illness. It is often accompanied by other psychiatric disorders, too. The good news is it is usually quite treatable, but not always easily treated. The first step is to understand a little about what OCD is and how it is treated. The next step is to talk to others who have had this or still do for information and support. The final step is to do something about it!

[ Previous: How OCD disables a person ]

[ Table of Contents ]