Sorry if this is all confusing to you, 3beansforme. I really do apologize for adding all this information on this thread, but I felt it necessary.
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As Chemar has said, "I would highly recommend finding a doctor who is knowledgable about PANDAS and who will run the comprehensive tests". This is easier said than done in some places so I will suggest that if PANDAS is ever suspected then please contact NIH (sites listed above) and they can either refer on or give other suggestions.
It is vitally important that treatment or diagnosis is not given by a practitioner who is not aware of current findings on the PANDAS research... it changes all the time and there is even disagreement in medical circles as to criteria and treatment still to this day. It's still evolving.
Not many people on these forums these days probably know this, but my son had been (mis)diagnosed from age of 5 to 10 with a Strep. related movement disorder called Sydenhams Chorea. His treatment initially was an antibiotic and Clonidine. The antibiotic was to be given until approx. age of 21 as a preventative. This was pretty normal practice back then. Sydenham's Chorea is a condition that can occur in *some* people, not all people, who have had Rheumatic Fever after a Strep. infection. This of course was ceased when his diagnosis was later changed. PANDAS of course doesn't occur after Rheumatic Fever, but the autoimmune process involved is somewhat similar.
Anyway, I just wanted to post this somewhere in the hope that people searching out PANDAS information will realize that there is a real need for caution in both diagnosing and treating at this point in time until more clarification is forthcoming from the PANDAS studies. If anyone is seeking evaluation, please contact the Research centres such as NIMH, [or doctors outside of NIMH like Tanya Murphy or Barbara Coffey of course] because they will know what to do.
http://www.medscape.com/viewarticle/547096?src=mp
PANDAS May Be Overdiagnosed, Contributing to Overuse of Antibiotics
Paula Moyer, MA
November 2, 2006
AACAP 53rd Annual Meeting: Abstract C21. Presented October 26, 2006.
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"Is PANDAS overdiagnosed? Yes and no," said Tanya K. Murphy, MD, in a phone interview seeking independent commentary. "A lot of primary care pediatricians have not even heard of it, therefore not looking for it and diagnosing it. Some of the primary care doctors use the criteria of high titers and obsessive-compulsive disorder," she said. Dr. Murphy, who was not involved in the research, is an associate professor and chief of child and adolescent psychiatry and director of the anxiety disorders clinic at the University of Florida in Gainesville.
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Quote:
Dr. Murphy continued, "If you look at the younger age group, probably up to 25% to 30% of those with obsessive-compulsive and tic disorders would meet the PANDAS criteria. If you look at older children, the 11% is probably what I am seeing as well." Sudden onset should cause a suspicion, she said, noting that testing titers can help hone the diagnosis if the titers are high for 2 tests taken 4 to 8 weeks apart.
In children with PANDAS, the standard interventions for obsessive-compulsive and tic disorders are effective, Dr. Murphy said. These consist of cognitive-behavioral therapy, reversal therapy in the case of tic disorders, and pharmacologic therapy.
"Just because they have PANDAS doesn't mean you should withhold established treatments," Dr. Coffey agreed. "Cognitive-behavioral therapy can help prevent a more severe episode in the future."
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Pediatrics. 2004 Apr;113(4):883-6.
The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) etiology for tics and obsessive-compulsive symptoms: hypothesis or entity? Practical considerations for the clinician.
Kurlan R, Kaplan EL.
Cognitive and Behavioral Neurology Unit, Department of Neurology, University of Rochester School of Medicine, Rochester, New York
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Clinicians have been faced with much publicity and contradictory scientific evidence regarding a recently described condition termed pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS). It has been proposed that children with PANDAS experience tics, obsessive-compulsive behavior, and perhaps other neuropsychiatric symptoms as an autoimmune response to streptococcal infection. We review current scientific information and conclude that PANDAS remains a yet-unproven hypothesis. Until more definitive scientific proof is forthcoming, there seems to be insufficient evidence to support 1) routine microbiologic or serologic testing for group A streptococcus in children who present with neuropsychiatric symptoms or 2) the clinical use of antibiotic or immune-modifying therapies in such patients. The optimum diagnostic and therapeutic approach awaits the results of additional research studies.
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Full Text of above Article here...
http://pediatrics.aappublications.or...full/113/4/883
PEDIATRICS Vol. 113 No. 4 April 2004, pp. 883-886
SPECIAL ARTICLE
The Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection (PANDAS) Etiology for Tics and Obsessive-Compulsive Symptoms: Hypothesis or Entity? Practical Considerations for the Clinician
Roger Kurlan, MD and Edward L. Kaplan, MD
From the the source...
PEDIATRICS Vol. 113 No. 4 April 2004, pp. 907-911
http://pediatrics.aappublications.or...full/113/4/907
COMMENTARY
The Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection (PANDAS) Subgroup: Separating Fact From Fiction
Susan E. Swedo, MD, Henrietta L. Leonard, MD and Judith L. Rapoport, MD
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he PANDAS subgroup is both a clinical entity and the subject of scientific experimentation. Systematic, longitudinal observations have demonstrated that the PANDAS subgroup has a distinct clinical presentation and an identifiable course of symptoms and that, for these children, there is a clear relationship between streptococcal infections and neuropsychiatric symptom exacerbations. Additional research is required to determine the nature of that relationship as well as to determine the etiopathogenesis of the poststreptococcal obsessive-compulsive symptoms and tics. Additional studies are required also to determine the role of immunomodulatory therapies and antibiotics prophylaxis for this group of patients. Meanwhile, it is time to end the debate about the existence of the PANDAS subgroup and begin to "call to aid the science of experimentation ... so as to be able to know the true from the false."
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[p.s. despite how it may appear, I believe they will finally sort all this out and I am not in any way at all against this research or even the hypothesis, particularly because of my own exp. with Sydenham's Chorea, however, we must be
cautious and we must do no harm. Here we are in 2007 and we're still waiting for the results of that study that's been promised for so long]
