JJ’s Place - The Childhood OCD Project


	JJ's Place was created to help kids with OCD so that they can get help quickly and get control over their OCD. Jessica's story is just one among many, but it illustrates the problems with diagnosis and treatment that make JJ's Place an important new community all about Childhood OCD.

Jessica was two and a half when I first suspected that there was a problem. Like most first-time moms I imagine, I told myself that it was a phase she was going through. Maybe she was having a hard time adjusting to our recent move. Or maybe it was that I was expecting another child. Jessica basically woke up one morning and was unable to leave the bathroom because she could not stop wiping; she could not get "dry enough." A few days later her shoes became an issue. They had to be tied over and over again until they "felt right." I did what any mother would probably do – I "helped" her wipe over and over again or tie her shoes until she was no longer in hysterics.

Clothes became the next issue. None of them felt right. At this point, we decided that phase or no phase, Jessica should be evaluated. She was now three years old. Her therapist said that Jessica had mild anxiety issues. We were likely to see these behaviors ebb and flow during times of stress and during transitions. Okay. We could all live with that. Based on advice from her therapist, we would just create an environment that was a little more structured and predictable. This would surely help.

Well, it didn't. Her behaviors continued, and they continued to change. Sometimes it was wiping. Sometimes it was socks. Sometimes it was getting dressed. Sometimes it was bathing.

At some point my mother suggested I talk to her therapist about Jessica. Ten minutes into our session, she mentioned something called Obsessive-Compulsive Disorder. I was very skeptical. Wasn't that the disorder where people washed their hands for hours because they might die from germs? Jessica's behavior didn't seem that extreme to me. The longest we were ever delayed by her "moments" was maybe 15 minutes. Nevertheless, I mentioned my mom's therapist's "diagnosis" to Jessica's therapist. I was told that no, Jessica didn't have OCD. Maybe she had "OCD-like tendencies." Anyway, I was told that she was too young (five at this point) to be diagnosed with OCD. That worked for me, especially since it was what I wanted to hear.

Jessica continued with her therapist for two more years. Sometimes she seemed better; sometimes she seemed worse: further evidence, I was told, that her issues were probably not OCD-related. By the time Jessica was seven, things had become unbearable. I was getting divorced during this time, which was probably contributing to her anxiety. Unfortunately, this gave her therapist something to focus on as a cause of Jessie's anxiety, instead of looking at it as something that was merely exacerbating her preexisting, yet undiagnosed, OCD.

Meanwhile, her rituals got worse. Getting to school on time was a major ordeal. She would only wear certain clothes, and only sandals (even in the winter). Sometimes she wouldn't go to the bathroom before or at school -- she would wait until she got home, which sometimes meant not going for 19 hours. She "had" to quit ballet lessons because she couldn't deal with wearing the tights. She "had" to quit soccer because she couldn't get her socks and shoes on for practices and games (and she could only wear dresses on the field). At the time, I didn't realize that I was helping to feed her OCD by letting her do her rituals and avoid these challenging activities. I was just trying to help her get through the day. I felt like I had tried everything -- and I had become very angry towards her. It felt like she should just "try harder" and she'd be able to control it. Finally one day I spanked her for wiping one more time. At that point, I knew that something had to give.

Once again, I talked with her therapist about OCD. No, I was told, it wasn't OCD. But her therapist conceded that maybe it was time for Jessica to see an occupational therapist. Maybe she had "tactile sensitivity."

For the next year and a half Jessica rolled on balls, rubbed herself with brushes, and occasionally practiced putting on her tennis shoes (a very big deal) with her occupational therapist. All of this was designed to relieve her of her "tactile sensitivity," but still, no one still would say if Jessica had OCD.

Jessica was turning nine, and it was clear to me that occupational therapy was not helping. I became more and more convinced that what we were dealing with was obsessive-compulsive disorder, even though no one would say so. I took her to a psychiatrist, who prescribed Paxil. That seemed to help -- at least for a while. But then symptoms began to return in full force. Jessie would do rituals in the shower, trying over and over to get the soap "off" and to feel just right. She would take ages getting dressed in the morning, putting on her pants over and over. If she was interrupted, or even if she heard someone outside her room, she would start her morning rituals over. She couldn't go to sleep-overs. She couldn't swim at pool parties. She would get upset and scream or yell if she had to sit on the wrong side of the car, or if someone interrupted her when she was getting in and out of the car. It wasn't pretty.

Around this time I got remarried. My new husband happened to be a law professor, and he was very used to doing research. He started ordering every book on OCD we could find, and we started to research OCD on our own. We read a couple of books, and I figured out that what Jessica needed was a cognitive-behavioral therapist -- not occupational therapy. But it wasn't an easy thing to find a behavioral therapist in our town. Jessica's original therapist suggested a woman who had worked with other children with OCD and "knew" cognitive-behavioral therapy. We took Jessie to her and explained our concerns. We even gave her a book on treating OCD in kids, and talked about her experience with anxiety disorders and OCD. We thought we were on track, and it was a great relief.

After another year of therapy, however, it was clear that things still weren't improving. Jessie was starting sixth grade, and she was having a really tough time. Although during the summer she had seemed to have her OCD under control -- she even went to sleep-away camp! -- the school year brought a new and intense round of rituals. Life was getting really hard again. And her new therapist, although a wonderful woman and someone that Jessie liked very much, didn't, it turned out, have much experience with cognitive-behavioral therapy. She felt like Jessie might be too hard a case for her. She described Jessie as "really tough."

At this point I got angry, but it wasn't at Jessica anymore. Why hadn't these professionals been able to help Jessica? Why hadn't they known their own limitations?

Anger soon turned to action. We started to really read all the books we'd bought a year or so before. We began to e-mail OCD researchers and clinics around the country. Who, we asked, really understood OCD in kids? Who were the experts? Where should we take Jessica for help?

Without exception, every single one of these researchers e-mailed us back. Even Dr. March, one of the leading researchers on OCD and presumably a very busy man, had time for Jessica. He suggested that we contact the team at the University of Pennsylvania and go for an evaluation. We looked into it and decided to go to Penn. Meanwhile, as we waited for our upcoming appointment at Penn, we found a "real" cognitive-behavioral therapist in Denver.

This new Denver-based therapist believed that Jessie did have OCD, but she encouraged us to go to Philadelphia for a second opinion. This second opinion, by a wonderful therapist at the Center for Treatment and Study of Anxiety, took all of two hours. I don't think I'll ever be able to describe how it felt to be in such competent and caring hands. As this therapist administered various diagnostic questionnaires and tests it was absolutely clear that Jessie fit the profile. We finally had an answer. This meant we could finally start really helping Jessica.

This nine-year ordeal of uncertainty and frustration is the reason for this website. During that time I learned a lot. I learned to ask questions. And I learned that OCD can be managed, and contained, despite how terrible and hopeless it sometimes feels when it's at its worst.

No child should have to spend that long wondering and being scared about what's wrong with her. No parents should watch their child struggle needlessly. They should be able to find and get help. If it was this hard for our family to find help for our child, what happens to other children?

It is our hope that this website will help other kids and their families avoid needless dead ends, so that every child with OCD is diagnosed and helped as quickly as possible. Children with OCD deserve as much of their childhood as we can give them.