PANDAS definitely not extinct

I read Beth Maloney’s book, “Saving Sammy”, in one sitting. It is a beautifully written, riveting and inspiring story of her struggle to deal with her son’s sudden onset of obsessive compulsive behaviors, which eventually took over the life of her family. It is also the story of how to deal with those doctors who don’t keep up with the current literature, and who stubbornly refuse to recognize that they could be wrong. Fortunately, Beth persevered with intelligence and eventually found the path to successful treatment for her son. Sammy had a disorder termed PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. As the name implies, the sudden onset of OCD in a previously healthy child, can be caused by a streptococcus or several other types of infection, and the most common theory is that the anti-strep antibodies that are produced somehow affect the function of the brain. This autoimmune disorder is nicely summarized in the very recent issue of the National Institute of Mental Health Director’s blog (see also http://www.ocfoundation.org). In that short note, Tom Insel brings up the impending change in the diagnostic criteria for this disorder, which will combine it with acute onset OCD or anorexia symptoms under the title of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). One issue that may get lost in this shuffle is, however, that at least a very significant subset of PANDAS – the strep associated illness – can be diagnosed immediately by testing for strep, and treated often very effectively with a high powered antibiotic called slow release Augmentin. Insel notes that a double blind trial is under way to test the efficacy of an alternative, immune-based treatment involving intravenous immunoglobulin. I wonder why they chose this expensive, difficult to get treatment as a front line therapy over the cheap, easy to access antibiotic approach? As Beth Maloney says, “Honestly, running a simple strep test at the outset would probably catch 90% of the kids.” Even if that is an overestimate, running this simple test immediately seems eminently logical. This also applies to the incredible situation in Leroy NY, where a bunch of teenagers suddenly came down with similar OCD-Tourette’s symptoms. One doctor finally came in and tested them and found a high frequency of strep and mycoplasma infections and has begun antibiotic treatments.

Infectious Behavior, indeed.

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6 Responses to PANDAS definitely not extinct

  1. swampy99 says:

    So excited about these discoveries, as several children in my family have this syndrome. One is entirely well again, and the other is improving greatly with treatment. Remember the naysayers who ridiculed the claim that washing hands saved lives, and the more recent ones who said ulcers were caused by stress. Keep doing your own research and persevere.

  2. JARyan says:

    Excellent article. Not all PANDAS children respond as effectively to Augmentin. Some children require stronger antibiotics. My PANDAS son whose now 15 has always required clindamycin & rifampin combination treatment for exacerbations. In between, he remains well on azithromycin prophylaxis.

    • phpatterson says:

      Thx for your comment JARyan. Your info may be helpful to other readers. Cheers,
      PHP

    • Angela Bugeja says:

      Can you please tell me how you were able to find a pediatrician in your area that specialized in the treatment of PANDAS? My psychiatrist in Fort Smith, AR is the only one that is working with my son currently, and he has gone from an ASO titer of (1 year ago) 572 in April 2011 to 275 in Dec 2011 to 2583 this May 2012. I’m very concerned, escpecially since no one in this area seems to know anything about this disorder and I really need to find someone that can help me get my son stablized and get his strep level reduced. Every time my youngest son’s ASO titer shoots up, my oldest son comes down with strep, do you think that my oldest son might be a carrier?

      • phpatterson says:

        Thanks for your comment Angela. As far as I know the best source for physicians is at the Provider page of pandasfoundation.org. It is certainly possible that your other son is a carrier. I wish you well with your son. Sincerely, PHP

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