I’ve been meaning to write a post about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus) for a while, but I think this recent article in The Boston Globe by Neil Swidey does a much better job of describing it than I could. PANDAS, which is characterized by a sudden onset of OCD-like symptoms, is also characterized by a good deal of controversy within the medical community. Because PANDAS is believed to be caused by a strep infection, the treatment is not Cognitive Behavioral Therapy; it’s antibiotics.

What I find most interesting about the article is not only the string of misdiagnoses, but how the correct diagnosis was finally made. The sick child’s mother was thumbing through a magazine and came across an article about PANDAS. She knew then and there that her son was suffering from this disorder. The health professionals that had treated her son had missed the mark. One had never heard of PANDAS, another diagnosed him with obsessive-compulsive disorder, and yet another suggested anorexia nervosa. Neither of these diagnoses really made sense to the mom, and then luckily, she read about PANDAS.

This story illustrates how important it is for parents to trust their instincts when it comes to their children. Nobody knows your child as well as you do, and nobody cares about him or her as much as you. If a diagnosis doesn’t seem right to you, there’s probably a good chance it isn’t. To me this article is also a great reminder of why we must spread the word about PANDAS, OCD, or other illnesses that are uncommon, misunderstood, or difficult to talk about. In some way, shape or form, we just might connect with people who will recognize themselves (or their child) and then go on to get the appropriate help.

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12 Responses to PANDAS

  1. nrkellner says:

    I read the Neil Swidey article as well and I am glad you are sharing it with this audience. Your words ring so true. It is SO important “for parents to trust their instincts when it comes to their children.” Although I don’t have a child with OCD, as a mother of two (now grown) children, I believe we can never underestimate the value of a mother’s instinct.

  2. I agree wholeheartedly with you. It’s so important to spread the news. I first learned about OCD from reading a magazine article. I recognized myself, and I couldn’t believe there were others that did the same things I did. Though it was years before I told a doctor about my symptoms, just knowing I wasn’t alone helped me.

  3. I would love you to include one pinable image. I so want to pin so many of your posts. Shared this on Facebook.

  4. I did get the original article and pinned it. but would like to do what I can to expand your readership. Thank you for all you do.

    • ocdtalk says:

      Thanks so much Katherine. I have no excuse; You are absolutely right. I need to include images in my posts and it’s on my “to do” list, but I still haven’t done it. Thanks for all your support, and I will try to post a pic with my next post!

  5. 71º & Sunny says:

    Wow. What a brilliant article. Thank you so much for brining it to my attention, Janet.

  6. Jennifer Hedberg says:

    My son has this. He also gets intense separation anxiety. I knew something was wrong so we took him to a counselor and she recognized it. With penicillin he was much better. This started in 2nd grade, he’s in 7th now and it seems to be gone. we did have one doctor that was so horrible I ened up slamming the door upon my exit. I wrote a letter to him and his office and moved on to a great doc!!

  7. Jennifer Hedberg says:

    You have to do a strep titer to know for sure if someone has it. A throat culture won’t tell you, your child might not even look or seem sick!!

    • ocdtalk says:

      Thanks for sharing, Jennifer. I’m sorry you had that one horrible doctor but how great that your son was diagnosed and treated early….as you well know, that is often not the case. Glad he is doing well.

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