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This story is part of our blog series called “Stories from the OCD Community.”  Stories from the community are submitted and edited by Toni Palombi. If you are interested in sharing your story you can view submission details at www.iocdf.org/ocd-stories.

By Alex R

I have been diagnosed with severe pediatric acute-onset neuropsychiatric syndrome (PANS) and obsessive compulsive disorder (OCD). Prior to my diagnosis, it felt like my life was stripped from me. I could no longer do things I had previously been able to do because of the rituals associated with each task. Simple things such as walking down the stairs, drinking water, and packing up my books and heading to my next class became tiring and very stressful tasks. Thankfully, I was lucky enough to receive treatment relatively quickly, as my mother is a doctor and was able to pick up on the signs of OCD.

Through personal experience, my family and I discovered that the way parents respond to their child’s OCD is essential for their well-being and recovery.

Below are six things parents need to know (and what we wish we’d known) about OCD:

    1. Do not punish your child for their OCD. OCD is not something one can control (without treatment). Someone with OCD is already going through a lot and feels the consequences of their compulsions; for example, their compulsions can make them feel embarrassed, like they are letting others down, and that their life is slowly being taken from them. Punishing your child won’t help; it will just make them feel more stressed and upset. Always use positive reinforcement to encourage your child to engage in behavioral therapy for their OCD, as support will help them to face their fears. 
    2. Communication with your child is key. It is essential to communicate with your child and to ensure they feel comfortable talking to you about their experiences. It is important for children to be able to speak about the treatment methods they find to be ineffective and when they find therapy stressful. The more comfortable a child feels talking about OCD, the less they will try to hide their compulsions. This will reduce your child’s suffering and help to make the OCD treatment more efficient and effective.
    3. Having OCD is not something to be ashamed about. OCD is a mental disorder, caused by an imbalance of chemicals in the brain. A person cannot control whether they have OCD or not, any more than they can control the color of their skin or eyes. OCD does not define who a person is (just as a broken bone doesn’t define who someone is).
    4. If your child extensively exhibits OCD tendencies, you should see a medical professional as quickly as possible. OCD is a mental health disorder that affects people of all ages. People with OCD get caught in a cycle of obsessive compulsive behaviors that affect their lives to a great extent. It is important to get treatment as soon as possible, since OCD can become worse over time. The reason my OCD became so bad was that we waited several months before seeking treatment. 
    5. OCD is treatable. There are various treatments for OCD including cognitive behavioral therapy (CBT) and medication. CBT is basically behavioral therapy where you work with a therapist to develop strategies to cope with OCD. The primary way of doing this is “challenging the OCD,” which is doing the opposite of what the compulsions are telling you to do. This sends a message to the brain that the compulsions are unnecessary. Ask a medical professional for more information regarding which method of treatment is best for you.
    6. Your child is not alone. Millions of people worldwide are suffering from OCD, and many more are suffering from other mental disorders. Approximately one in every 100 children worldwide has OCD.

Alex R. is fourteen years old.

 

3 Comments

  • I would love to know more about if and how the PANS was treated, or was just your OCD treated. I am working with several clients now who have children diagnosed with PANS and PANDAS, and getting reliable help and reliable diagnosis has been difficult. Were you able to find a pediatrician who even believed in PANS?

    Reply
  • Anne Farley

    My 16 year old has a cute OCD and is in a crisis of epic proportions. I had no idea OCD could make the person believe such irrational things like; my voice hurts his ears and he will go deaf if I speak to him. That I can’t look at him or he will be ruined, the house, his bathroom, his bed etc etc is all ruined. These things came on fairly sudden and after exhausting calls trying to find help for ocd this acute in New Mexico, I was lucky enough to find the OCD support group in Albuquerque, and there happened to be a meeting the next day.

    They saved me and I believe they will have saved my son. The 2 women that head the group shared their knowledge and experience with me, researched where to bring him, gave me the numbers to call and followed up with me once or twice a week until I was finally able to arrange for him to go to a facility in Denver in 2 days. This is to begin treating his eating disorder and getting him medically stable and getting some weight on him because he’s become so thin, and then I will decide where to go for the OCD treatment.

    I just didn’t understand how this illness works and how to respond to my son. Sometimes I thought he was just madd at me and was trying to show me he was in charge. I made so many mistakes, I’m so glad to have found help and real information.

    Reply
  • Helen O'Connell

    Hi Anne , I am really hoping that you can find the right treatment for your son and that he will soon be on the road to recovery. I am also the mom of a 17 year old boy with OCD. He received intensive outpatient treatment the summer after his second year of high school and he is now a senior planning for college. OCD is hard to cope with but it can be managed.
    I am wishing you and your son all the best and I want you to know that there are many moms like you and I out there.
    Helen in TN

    Reply

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