I have been working with Children with PANDAS/ PANS for years and I have a 16 year with PANDAS/PANS who is also on the Spectrum and is high functioning. I have seen a significant increase in the incidence of acute onset neuropsychiatric symptoms caused by many non-strep triggers including dental infections, rhinosinusitis, UTI, skin infections, acne and more. PANDAS caused by a Group A strep infection is fairly straightforward to diagnose but all the other causes can be much more difficult to diagnose. Locating the source of recurrent Strep exposures can also be tricky when you see an obvious flare with no Strep throat infection. Very often the Strep ends up in some other part of the body possibly protected by a biofilm or in an area that allows for less than complete eradication. I culture as many areas as possible but the yield is low.
I would like to look at the different microbiomes and the role they may be playing in these disorders. The followup would be to use strategies to change the individual microbiomes as a treatment intervention. Testing before and after would allow for proof of this correction which could be correlated or not to an improvement in symptoms. We know antibiotics have significant postive effect in many children but this is not a reasonable long term treatment and if pathogens are sequestering in biofilms it is a losing proposition. Fecal Microbiota Transplant using Capsules would be the intervention to address the gut as this is being used now for patients with C diff and studies using the same capsules have been shown to have improvement in symptoms in patients with Autism - which will be my next submission. I already have a large group of patients local and online that came together to do very very loose group intervention using enteragam time 3 months to determine if correlation with improvement in symptoms. Because it was not a real study accessing the enteragam for all was very difficult and very few patients were able to complete daily use for three months. This same group would be very happy to participate in an actual study and most would be very interested in using FMT as an intervention.
From years of experience I know that other microbiomes are also an issue and nasal pathogens would be the next area I would explore. I find Group A strep in nose frequently as well as so many other unusual pathogens that I routinely use compounded antibiotic/ antifungal / Biofilm busting nasal sprays in my patients becasue oral antibiotics are not as effective due to biofilms. Same treatment intervention would apply. Will not go through each microbiome in detail but the same course of showing an association and then implementing plan would apply to each. Although I know see adults with some of these same symptoms I would keep the study to a Pediatric Population. PANDAS/ PANS is still a clinical diagnosis so there would not need to be outside tests that had not already been done in course of work up.
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