Presenter: Roger Kurlan, MD
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NJCTS presented the first of two Wednesday webinars on PANDAS (pediatric autoimmune neuropsychiatric disorders) featuring experts in the field of TS with perspectives on the effects of strep infections.
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How do you respond to the theory that psychotropic meds and ADHD meds exacerbate PANDAS symptoms instead of help them.
How or where could the PANDAS Foundation obtain grant money in order to get physicians treating PANDAS to get together and share their ideas and thoughts and agree on a new name and list of criteria for the larger disorder which has been recommended be renamed to Neuroimmune Mediated Obsessive Compulsive Spectrum Disorders by the OCD Best Practices Foundation?
You mentioned that strep cultures are not completely accurate because of the “carrier” factor. Do you know of a better method to determine a positive strep infection.
You mentioned the got strep campaign stating Joint pain, separation anxiety, urination frequency as being symptoms.
These symptoms are also listed under NIMH website. Have you not seen any of these symptoms during your study?
What is the usual treatment of TS?
Do you think it is just coincidental that some PANDAS parents can predict STREP infections in their child before strep symptoms occur because of behavior changes?
With stress being the major cause of the TICs, if the stressor is recognized and treated with behavior modification will the tics go away or reduce in frequency and or severity?
Has treatment with IV antibiotics ever decreased the symptoms of TS?
During your Case study did you only look for strep only in the throat?
You also tested for titer levels- is it true that NOT all people show a titer rise with positive strep culture and strep symptoms (fever, red spotted throat).
In response to the first ? on If Dr. Swedo’s criteria are so criticized….1. The problem is that there are no accepted, proven criteria for any type of post-infectious, autoimmune neurobehavioral disorders beside Sydenham’s chorea and something called acute demyelinating encephalomyelitis (ADEM), which shows characteristic changes on MRI. Not many good scientists are convinced that the evidence really indicates that PANDAS “has been discovered”. It is clearly a hypothesis that has some evidence in its favor, but more evidence against it right now. People should know that in the 1950’s and 1960’s a very similar controversy occurred when some doctors proposed that autism was due to strep infections. Eventually, good scientific studies proved this to be wrong. Similar controversies have occurred related to certain kinds of arthritis and other conditions. In every instance, good science disproved the proposal. Since strep is so common, it is easy to find it in association with anything. What is important is not that it is present, but whether or not it actually causes the problems of interest.
In resonse to 2nd on psychotropics…. I’m not aware of any medical report that psychotropic meds exacerbate PANDAS.
In response to Grant Funding… Scientists have tried to get funding from the NIH and the TSA for a meeting to discuss future research needs in this area, but so far no funds have been provided.
In response to strep cultures… A strep infection is formally defined as a positive culture for a new strep strain (strep comes in many different strains) along with a significant increase in anti-strep antibody titers. Both are needed.
In response to joint pain & NIMH… We have not seen joint pains or urinary symptoms in our study.
In response to usual treatment of TS… Please tune into my next webinar.
In response to “coincedental..predicting STREP… Exacerbations of tics or OCD often are associated with any kind of stress- infection (strep and others), personal problems, etc.
In response to reducing stress…. It is clear that reducing stressors commonly in turn reduces tic severity.
In response to IV antibiotics….. There is no good evidence (for example, compared to a placebo) that antibiotics improve TS.
In response to strep in throat…… We only looked systematically in the throat, although we cultured for other reported infections (eg, skin rashes). Any real strep infection (not colonization or carrier state) should cause a rise in antibody titers- this is how infection and carrier state are distinguished.
Anyone interested in details about the culture and antibody results from our study can see our article in the journal “Clinical Infectious Diseases”, 2010, Volume 50, pages 481-490. You will see how important it is to be very, very careful in interpreting culture and antibody information.
I would be very interested in knowing how many people have a child diagnosed with PANDAS who meet the following criteria:
1. Acute, dramatic onset of symptoms (totally different child from 1 day to the next)
2. MRI showed swelling in the brain
3. Documented group A strep infection within the prior 4 weeks.
We have a 9 year old son with symptoms that could have been PANDAS due to the sudden and severe onset at age four. But, we could not find the strep ( he did have a respiratory infection but strep culture negative). I get tired of looking for strep. We have had A LOT of strep in our family, and my son had to have a tonsillectomy at age 6 after 9 strep tonsillitis infections in a row. And his symptoms do get worse with strep but also with other viral infections (but not all viral infections). Here is my main question however: would it not be entirely possible for persons predisposed to TS/OCD, that there could be an autoimmune component? When my son was four years old, and had a big flare of symptoms, he was completely incapacitated very very suddenly for weeks with many complex tics and abnormal movements, severe OCD, could not eat, hallucinations, staring spells where he was “gone” intermittently, and yes, JOINT PAIN (severe hip, leg and knee pain; there were times he could not walk and needed carried to go potty). Every person we consulted commented on the “classic PANDAS appearance” of his symptoms but lack of strep. I am not so concerned with tracking down strep as I am with trying to figure out the MECHANISM of how and why such severe symptoms that are sudden occur. I just do not feel in my heart and brain that regular OCD/TS is related to joint pain. But I have seen it with a TS/OCD symptom flare as above. My son did at age four have a EEG due to the staring spells (normal) and a CT of head due to macrocephaly and the symptoms which showed a borderline enlarged ventricle but the neurologist was not concerned so that must be OK…I think he was ruling out hydrocephalus and or mass. Sorry for all the personal information. Dr. Kurlan, I’m sure you are aware, if parents see this ACUTE debilitating onset of symptoms, there is kind of a PTSD thing that kicks in…keep it mind always, it changes your life forever. Did your “PANDAS” kids in your study have symptoms that were SUDDEN, SEVERE, and rendering them COMPLETELY nonfunctional? In my mind, that is what I think of with “PANDAS” or “PAND” or whatever it may be called in the future when all this is said and done.
The whole controversy about PANDAS is whether or not these types of symptoms can indeed occur on an autoimmune basis. Right now, we just don’t know.
This discussion has been closed. Thank you to everyone who participated!
If Dr. Swedo’s criteria are so criticized, why has PANDAS not been renamed to Neuroimmune Mediated Obsessive Compulsive Spectrum Disorders in order to stop doctors from wasting time trying to disprove it and instead direct their attention to developing criteria for a newly named disorder. There are many types of PANDAS discovered to date.
Posted on February 24th, 2010 at 8:11pm by HeidiSchuster