Childhood OCD is a heartbreaking condition that is often missed or misdiagnosed because it can look like ADHD, and often results what appear to be impulse control or behavioral problems. People tend to suffer with OCD for an average of 8-9 years before receiving an accurate diagnosis and treatment. They good news about childhood OCD is that early intervention is key and when identified early OCD is very treatable. I know this both as a clinician and as the parent of a child who experienced Sudden and Severe Onset Obsessive Compulsive Disorder (OCD) or PANDAS.
Experts define OCD as the recurrence of distressing thought, sensations or images that cause extreme discomfort or anxiety. The person then feels compelled to engage in repetitive behaviors to relieve the discomfort, and the compulsive actions or thoughts eventually begin to interfere with their lives. PANDAS is a specific type of OCD that is triggered by a strep infection.
Most parents with a child who had PANDAS can tell you the exact day that came on. For me, it was December 26th. My daughter was eating a Christmas cookie that she had made with her father, and she found a tiny piece of plastic wrap on the cookie. She launched into a million questions – and I might not be exaggerating. “What if I swallowed plastic wrap mommy?” “How do you know I didn’t swallow plastic wrap?” “Would I suffocate if I swallowed plastic wrap?” “Would I be dead by now if I did swallow plastic wrap?” Now, these are questions any concerned child might ask, since we often tell them that plastic bags could suffocate them, but her questions went on for hours. I did what any loving parent would do. I reassured her, and reassured her and reassured her – not realizing that reassurance seeking is a standard type of compulsion in OCD, and that by accommodating that, I was making her worse. But I didn’t know she had OCD because, although she had always been a bit anxious, she had never exhibited the type of symptoms I was to see over the next 6 months. Emily began to compulsively wash her hands to the point that they were red and dry and hurting her. She refused to eat anything prepared at home. She refused to go into her room because it had at one point had a toy in it that someone told her might be dangerous. She wouldn’t wear certain colors. And she began to be afraid to swallow her own saliva, spitting it out whenever possible. She was so distraught that she said she didn’t want to live if this was how her life was going to be.
As her mother, I was distraught as well. At that point, I had been a Licensed Marriage and Family Therapist for nearly 15 years, and I felt that I should be in a position to help my daughter, but I found it incredibly difficult to find her appropriate treatment. Many people, including some therapists, told me that her symptoms were behavioral. I knew better. When you put a giant bowl of ice cream down in front a hungry child, and she tearfully refuses to eat it for fear that it might kill her, it is heartbreaking. But I was told to ignore the behavior and that she would eat when she was hungry enough. When an 8 year old loses 6 pounds in a few weeks, another theory needs to be considered. Fortunately, I knew that, but I still didn’t know how to help her.
When your child is acting in ways that are confusing and disruptive, your natural inclinations are to try to understand and to try to help. Unfortunately, when OCD is at the root of the problem, oftentimes, our intuitive reactions actually reinforce the problem. With OCD, the compulsions are there to neutralize the obsession – in other words, people feel they must do something in order to feel right. When they do something, or avoid something or think something or get reassurance, the obsessive thoughts or “not-right” feelings actually do go away. In that way, they “learn” that they must do the compulsion. Every time they do, they reinforce that learning. The marble gets deeper and deeper into the groove. The pattern is stronger. They have fed the beast. Helping a child to understand this is no easy feat, but essential to their ability to get better.
OCD is extremely treatable – especially when it is caught early. But having the proper tools and a real understanding of the issue is only part of the process. It takes work and a lot of family support.
I watched my daughter face down the “bully in her brain.” She had to let herself feel the fear and the discomfort and not react to it with a compulsive behavior. She had to sit with her uneasiness, and not do anything about it. At times she was terrified to the point of tears, but she got through it, and she has learned skills that will benefit her for the rest of her life.
Any individual who is battling OCD is a tremendous teacher for the rest of us. The skills that they learn should be taught in every elementary school so that the entire world could benefit. If we really think about it, it is so clear that we could all stand to get better at leaning into the uncomfortable feelings in life instead of reacting to them and doing something to make them go away. Kids with OCD are forced to learn this at a young age, and it is the silver lining of the condition. The next time you are sad or angry or nervous, try to allow yourself to just experience that feeling without distracting yourself, or lashing out at someone or doing whatever it is that you typically do to feel better. It’s like jumping in a cold pool – eventually your body adjusts. Our nervous systems are designed that way. The feeling, if you allow it to be there and you don’t try to get rid of it, will eventually dissipate. The water in the pool doesn’t get any warmer, but it feels better to us. Usually, nothing much changes in our life, but we feel differently about it the next day. Feelings come and go if we allow them to. Everything changes – even if we don’t do anything about it.
There is a very specific protocol for treating children with OCD that involves Cognitive Behavioral Therapy (CBT) and Exposure and Response Prevention (ERP). Other adjuncts to those approaches, including Mindfulness training, are helpful as well. If you have a child with OCD symptoms, whether the origin is PANDAS or not, these methods can help, and you should find someone who is trained specifically in OCD to help you. The International OCD Foundation website www.iocdf.com has a list of trained professionals. My daughter experiences very few symptoms today – in fact, no one would ever know what she went through. But I do, and it has changed the way I view mental health care. I have enormous confidence in peoples’ ability to heal from even very severe conditions.