Strep Today, Anxiety Later?

I believe any parent with a child with sudden onset OCD or eating disorder symptoms deserves to know about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep). Unfortunately, it may take a great deal of work to get one's doctors to consider it. One family I know had to drag a doctor into doing the testing (not for strep, but for the antibodies of a recent infection) despite a family history that was well-documented and the fact that one of the parents was a respected physician in another field. That family's doctor became a believer overnight having seen the test results. I'm hearing more and more of this, and have encountered a growing number of families who are insisting on having a child tested.

I've been disappointed to hear from leading eating disorder researchers that they doubt the connection. Even a leading proponent of the theory believed the PANDAS cases she was documenting were only a small subset of all eating disorder patients. But what strikes me is that we have a field where everyone has far too high a level of skepticism about things that have not been studied in a field where too little has been studied at all and MOST of what is being practiced has no research to support it. This is an area where we don't know what we don't know, and certainty is probably ill-advised.

From Throat to Mind: Strep Today, Anxiety Later?


  1. Laura,
    Thanks so much for this particular post. It was only when I was 21 that I was diagnosed with PANDAS. For me, PANDAS causes a massive depression and it's this depression that causes me to starve myself.
    During my senior year of college, I started having startling thoughts of suicide. I was open with my parents about it, and they were amazing. They didn't freak out, they trusted that I wasn't going to act on it. But we all agreed that I needed more help, so I saw a new psychiatrist. This psychiatrist sat down with me and went through every period of depression and/or anorexia with me. We noticed a pattern. A week or two prior to a major depression or a sudden change in my mind that I did in fact have lots of weight to lose, I had been physically sick and had a sore throat. I've never tested positive for strep, I have noticed that my depression symptoms ease up when I take antibiotics.
    This loving, awesome doctor basically said, "You can't technically be PANDAS because you're not a pediatric patient, but let's treat you like you've got PANDAS and see what happens."

    The pain and unending depression that followed me from 12/13 to 21 lifted.

    Life since then has been pretty good.

    I also take precautions when someone around me says that they have strep (or better yet, my daughter tested positive for it.)

  2. I believe that both of my boys have PANDAS, but I can't find a doctor who is willing to try antibiotic-therapy. In fact, when my first son was in the depths of anorexia, I basically had a doctor completely blow me off -- he has a great reputation as a doctor and I was dismayed at how easily he cast off all of these new ideas. Now that son #2 is have OCD stuff start, I'm more worried than ever.

    My question is what happens if they never get antibiotic therapy. Is it still possible to recover from PANDAS without it?


  3. I am by no means recovered from PANDAS. Even though I've taken antibiotics, I'm prone to exposure of strep. Many times I know when I've been exposed and can try and take precautions.

    Where in the country are you? I'm sorry, I'm not trying to be nosy. I know of some doctors in Florida who are actively working on this and I'd be happy to try and find some local resources for you.

  4. We did antibiotic therapy, but honestly I can't tell you if it helped. We also did intense refeeding at the same time, CBT, etc. We hit the AN from all sides. I do think there is something there in regards to PANDAS and luckily our pediatrician agreed to the therapy. I wish Dr. Sokol was still alive to continue her research on PANDAS-AN.

  5. I have, so far, talked to my daughter's psychiatrist and our family doctor. Neither one is even willing to discuss this option with me. They have both told me that the test is "too difficult" to take, involves "far too much money" and "isn't conclusive". My daughter's OCD started after her first episode of strep throat. My son, I believe, is a carrier. I am not going to stop in my search for a doctor who will at least test her for the antibodies and perhaps TRY antibiotic therapy. I just don't see the harm in it. If it can even help a little bit, in my opinion, it is worth it.

    Sometimes the medical community is just so frustrating to deal with. I begin to feel as if they don't want to fix the problem, they just want to keep you coming back for therapy at $270 a pop (which is not covered under my insurance, btw).

    Thank you for writing about PANDAS. It is a little-known, often overlooked illness.

  6. We have a growing FAQ at the FEAST site on this:

    Antibiotics are not the only approach, and strep tests are not the way to diagnose. Check it out!


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