Raising Awareness of PANS PANDAS

0:07 a little bit about herself but I'd like to introduce a new French today who's going to be talking with us about pandis and um she's a dear Mentor a friend H roommate at conferences so I'm delighted here to be able to share and learn from again um Dr Anu fren she's been in clinical pediat uh clinical she's been a pediatrician for 29 years and she has opened and director of the SSM Health Cardinal Glennon Primary Care office in St Louis Missouri where she takes care of kiddos um with complex medical issues amongst which are pandas she's a fellow in the American Academy of Pediatrics double board certified integrative medicine and Pediatrics a course director and integrative Pediatrics for the 2024

0:52 integrative and functional medicine fellowship at UC Irvine Susan Samuel Integrative Health Institute she also has a terrific newsletter who which I subscribe to and suggest that you will as well um Facebook uh website um lots of great practical information for taking care of children so it's my great honor to introduce uh Dr an French I just want to again say thank you for this opportunity because you know I'm always so grateful for all the people who continue to be teachers and mentors to me in this field and when I have to you know share on pans pandas it gives me an opportunity to go back and look at what's out there you know what's research is you know making sure I'm staying within evidence-based guidelines and I'm staying on top of everything that's you know being offered in this

1:37 area so so the world per pans pandas awareness day was just um on Wednesday and uh you know this is a vast topic and we are not going to be able to cover all of it in 20 25 minutes um and but the the whole goal I think of my the learning objectives is just I want you to people to know that this is a disease it exists and if we can recognize it quickly and shorten the time between ond and treatment we can really help these children and I want to review sort of the Consortium guidelines and algorithms through an integrative lens and that's hope I'm hoping that's what we can achieve today when I heard pandas For the First Time The Talk for the first time I was completely overwhelmed and I had so many questions and I didn't feel like there was a lot of great resources

2:24 to go to there were a lot of resources but I couldn't find anything that was completely evidence-based and in 2020 Dr SU who coin this term she uh put together this website and it's very much driven by Panda's parents too they do a lot of the work on the back end and I'm I'm feel very honored to serve in a voluntary capacity on the professional Advisory Board and so everything on this website is evidence-based embeded and there it's just got toolkits and research and advocacy for legislation and anything that you might need to know that you want to learn about this topic this is the website I would direct you to about me I feel feel like um it's important for me to share that you know I'm approaching 30 years in practice but 15 years ago I was completely burned out professionally and personally and I just

3:11 was bored and tired and kind of done with Pediatrics and I stumbled on these fellowships and this whole wonderful world of Integrative Medicine and This Global community and I clawed my my way back from burnout through the creative arts and I I I think today my most important intention just being on this planet really is to build intergenerational resilience for myself for my two daughters who are now 18 and 21 and and they're venturing out into this really chaotic scary stressful world and also for my patients and their families because I you know since we opened this Clinic five years ago I all I see is medically complex chronically ill children with stressed out families

3:56 and and I feel like I've got to know how to self-regulate my myself in order to be able to offer tools of self-regulation and so all my intention through everything that I offer is that goal of building resilience and train changing structural systems that don't support it too so um these are patients that I've seen in my office so a 12-year-old girl with an Abrupt increase in anxiety OCD sleep resistance with separation anxiety at night declining executive function and handwriting and refusing Absolut refusing to go to school um a six-year-old boy with sensory processing and U disorder and emotional disregulation scared of bugs can stand smells and loud sounds and doesn't want to be touched urinating multiple times a

4:42 day every 30 to 40 minutes a 9-year-old girl with um an acute onset of restrictive food behaviors because she's afraid she's going to choke on her own saliva complaining of air hunger like she can't take a breath difficulty swallowing and is constantly checking expiration dates a 15-year-old boy with a transan disorder that abruptly becomes worse chronic cough throat clearing humming clicking baby talk talking like a 2-year-old behavioral regression afraid he's going to be abducted by aliens and absolutely won't sleep by himself so this is just a snapshot of what I see my office and clues in the history I think is really important a change in behavior that steadily worsens or persists it doesn't have to be abrupt um it doesn't have to be in a totally

5:28 previously neurot iCal kid and even if there's a social excuse like some kind of Psychosocial stressor not to blame that on this disease on that so this is a survey that was done that showed how long it takes for diagnosis so if you look at the the graphic almost a third of the patients took almost three years before somebody made a diagnosis a third of them between six months and three years and another third of them less than six months but it's still six months and what they saw was that most of these patients saw at least three doctors before the diagnosis was even considered considered half of more than half them so five doctors very typical of kids who end up in my office they've seen almost everybody and the most common inial diagnosis are those that are going to bring them to your offices to a psychiatrist office OCD anxiety

6:14 ADHD um and then oppositional Defiance on the autism spectrum to R and tick disorders and another study recently done showed the treatment barriers for these kids 80% had delayed diagnosis at least a month after the on the symptoms that if somebody even thought about it and the most encountered causes for the treatment delay were the clinician lack of awareness and the clinician skepticism about the disease so there's so much Medical gaslighting in this disease it's just unacceptable um the other common challenges were difficulties finding somebody to actually take charge of the care and misdiagnosis so definitions if we go back to 1998 Dr susuo was that the did you know published that first case series where she called it pandas and

7:00 she saw these children who had strep and developed an Abrupt onset of OCD and anxiety and pck and so on and and she called it pandas but that definition has evolved and expanded over the years and in 2013 and then in 2017 these consensus Consortium guidelines came out and and these were groups of people across the country who are all treating this disease in various capacities who kind of came together to create some sort of um a common ground and so they expanded that Global sort of umbrella term to be pan so that's pediatric acute onset neuros psychiatric syndrome and then if it's an infectious trigger if it's caused by strep it's called pandas it's caused by other um uh infectious infections it's called pans um I'm not

7:45 really going to touch too much on the non-infectious causes and I honestly don't go too much into that in my into my practice I think just trying to deal with the infections is is there plenty plenty of patients struggling with that I would say the one thing I would add on other microbes is co um Co has kind of been sort of a silver lining or a blessing in disguise because it's really shown us how an infection can actually cause a neuros psychiatric syndrome so this is a recent paper in 2024 that really goes into depth as far as the just this multifactoral etiopathogenesis for this disease so we have some genetic predisposition we definitely have molecular mimicry we know we know in acute rheumatic fever and cams Coria we don't question the fact that the patient a strap

8:32 infection develops antibodies that become autoimmune and attack the basil gangler and and the heart um this is exactly what's happening in pants pandas we have crossreactive Auto antibodies they target there are brain Imaging studies that actually show micral activation and structural changes in the card and pamin of the basal ganglia so you look at the slide if you look at the on the right side you have patients with Tourette Syndrome or OCD but they they don't have pandas and their brains look very similar to just controls who have no symptoms but if you look on the left side of the slide um you know you can see that patients with pandas have brains that look very similar to sidam chorea um the newer sort of um pathogenesis theories are that maybe group a STP is actually altering gut microbiota that's actually selecting um

9:17 specific Des biotic strains that are upregulating intestinal inflammation and immune response and it's this Persistence of this response that causes this kind of waxing waning relapsing reming course um inin 17 is really emerging as an important cyto kind in the immune response and I'll we'll talk later about some studies in Mouse models but in in the world of Rheumatology they really seeing how these patients develop arthritis that is driven by ilil 17 suggesting that this is not really like a psychiatric disorder but it's actually the brain's response to a global inflammatory uh process going on in the body and then just High rates of autoimmunity in first degree relative 60 to 70% um higher incidents of hands in patients with specific H um Al and and the response how these kids dramatically

10:02 response to immunomodulatory treatments it's really really impressive in the office so focus on History you know we looking at boys it's more common in boys than girls there's a family history of aimun disease recurrent URI sinus ear nose throat that kind of history but we have almost 80% of them don't sleep 98% of them show some sort of Behavioral regression 90% of them so urinary symptoms frequency urgency um they all have these sort of this this you know this phenotype that looks like ADHD concentration learning difficulty shortterm memory loss inattentiveness um they have handwriting deterioration dis graphia is really really pathognomonic of this disease many of them have restrictive food behaviors and and have they have severe ticks tick disorder

10:48 vocal motor facial um masturbatory ticks also U focusing in the private area so how do we diagnose this it is a clinical diagnosis we do not have a diagnostic test and so we have three we have major criteria and minor criteria the major criteria are a sudden acute or tra worsening of obsessive compulsive disorder uh severe restrictive food behaviors and um tick a tick Disorder so on the on the left side and this is from my epic this this is so you please feel free to use it if if you can put it in your notes because I use it in my notes so on the left side you have pan criteria so um if you have one of the major OCD or um restrictive food behavior and two of the minor criteria which are anxiety libility aggression

11:35 behavioral regression um ADHD and then like sleep and urinary symptoms two of those those seven on the right there you have pandas is you have either OCD and or tick as the major criteria and then the minor criteria again the same two of the minor and then there's usually a history of strep but it's really important to know that you may not see strep acutely in the moment and so even a history of a rash history palal peia exposure to a strep case at the time of symptom change or an asymptomatic carrier in the home or anything that's documented 3 months from the time of a documented strap case is definitely considered enough to make the diagnosis of the panis now these forms I've given you links this is a form we use in our office that the patients fill out um when they come in for their first intake

12:21 and then this is a form we use at every visit and it's really really um wonderful to see with treatment how they go from the right side all the way to the left from red to green with each visit as they get better and better so it's a real great snapshot to look at how a kid is doing in real time physical exam is really important looking for uh infection the ear nose and throat allergies coated tongue strawberry tongue palatal peti um perioral redness chapped cracked lips mouth sores and then teeth become a very important um disregulated of the immune system so making sure that the oral microbiome is healthy looking at their skin careful exam for go into TR go hives warts and meluscum again are huge immune dysregulates looking at the genital area you know for rings and redness and yeast

13:08 infections and perinal strep and Volva strep peeling fingers and toes Acro peeling is a sign of strep somewhere in the body um damaged nail beds chapped hands and then looking for tenderness at muscular skell many of these kids are extremely hypermobile which Donna could probably speak more to that about overlap between the musel disregulated kids and these kids that seem to affect their joints um in the ear Dan syndrome kind of in that spectrum and then when they come in in in crisis they all have dileted pupils um and they have these chop form movements you know so having them stretch out their fingers and they do this little piano playing and then if you ask them to to make a fist they kind of do this little milkmaid it's called the milkmaid sign where these are all signs of Basil ganglia and sephtis and then left side and neglect they just neglect the left side of their body and

13:55 sometimes when they're writing on the paper they will only write on the right side so there about this left-sided neglect and then obviously making sure that they don't actually have romatic fever um so this is a really these are wonderful photos from many of my mentors and teachers in the field Dr suso Nancy Ohara and Dr Peter Clinger who taught me so much on this disease um and this is a kid you can see when they're completely healthy they can draw that beautiful microscope and perfect penmanship when they're in a flare they can't write a straight line they're scribbling like a 2-year-old they can't color within the lines just so you can just see such significant difference in behavioral regression and disg graphia so I think that not being able to write is really an important red flag so this

14:40 is a flowchart from The transp Physician Network I think it's a good start um when you you you have a patient in your office and you're like okay what do I do next so you on the on the left side you can see the three major criteria in green and then the yellow criteria the in the box below so let's say you have a patient who satisfies criteria you do the strep it's positive take Tak you all the way to the right side of the chart they've got the comorbid symptoms you go down to the bottom you've made a diagnosis it's a clinical diagnosis and then you can kind of say are they mild moderate or severe and you manage them but if they have they don't have a postive St right away then you can send off a culture get some blood work and then wait on the results and then if they have tick and they have minor criteria then they're POS they have the disease if they have OCD in the minor criteria yes they have the disease and

15:26 then if they only have ticks but no criteria or they only have OCD and no criteria or they only have restrictive food behaviors and no criteria then we have to be very careful about making this diagnosis so I think it's a helpful start but um we'll go into kind of the way we approach it in our office so there's no biomar I yet so there's a lot of work all over the world looking at signature cyto kindes and metabolic profiles and and looking for actual like Auto auto antibodies um specific Auto antibodies and C so all of that's going on right now but right now we don't really have a diagnostic system which is why is a clinical diagnosis and so you look beyond the throat cultures the perianal area the Nars the skin look for cultures but staff is another huge

16:28 show that an IGG and IG microplasma is as good as a PCR so you do not have to get a PCR looking at an Ana and quantitative immunoglobulins to look at a general look at the immune system and then an EKG basically in preparation for using medications and also to rule out rheumatic fever so it's important that we swab family members because a carrier in the home a silent carrier in the home can completely um derail a child's treatment plan streptide has rise ASO in 1 to 6 weeks DNA in 1 to 8 weeks and anti DNA stay positive for for a long time but 40% of children with pandas and strep do not mount on immune response so again that's why tiers are not pathog pneumonic they're helpful and and antibodies are we never treat antibodies so if your child does not satisfy

17:14 clinical criteria would not be running tests on these kids because they're going to be lots and lots of kids out there with positive titer and microplasma like I said IGG and IGM titers are very important and I would say the number one cause of pans in my office is micoplasma so it's really want to rule out all these serious diseases that can sort of look like pans um because it's still a diagnosis of exclusion um and then you know I get a lot of Specialties involved to co-manage these kids with me and and this is you know these are the Specialties based on the reasons why I refer to them and as you can see Psychiatry is right at the top so these are Consortium treatment guidelines and they really want to emphasize a three-prong approach that we have to have psychotherapeutic treatment with medications and behavioral therapy and school involved and all of that as well

18:01 as treating with immunomodulatory therapy and antibiotics so they recommend a course of anti-al treatment for all new cases chronic secondary prophylaxis for those with recurrent or severe symptoms vigilance for new infections um using nids um and using steroids for patients who are flaring as they call regression and then they go into sort of the other treatments that are really sort of outside the scope of the primary care physician but IVIG and plasma foris and so on and then um they also recommend attent attention to vitamin D levels and probiotics and but really the most important thing is that psychiatric care is really really important so you know we kind of in our office sort of we look at how do we find symptom relief for the child and hook

18:46 them up with the right psychiatric medications and therapies how do we treat the source of inflammation um whether it whether it be bacterial viral or fungal how do we treat the immune disrup regulation with Nets and steroids and other integrative modalities and and other other things we can think about as a tons sectomy and using antihistamines and making sure vitamin D and omegas and and all the other things we do as integrated providers so in our office we take a thorough intake which I shared the forms we do a thorough physical exam if they meet clinical criteria then we take all the swabs that we talked about we make sure we're ruling out other differential diagnosis get the lab work going make all the important referrals hooked these patients up with therapy in school and so on and then we start

19:32 treatment so we start with a trial of um EDS and a trial of antibiotics and so for me uh the therapeutic trial is part of the treatment to see if they respond um I don't always go to steroids with the first visit um depending on how severe they are but we definitely do some kind of anti-inflammatory and antibiotics and then we obviously also address guten exercise and mindfulness sleep screen time all the things that we do for every patient so a little bit about uh this you know we use 5 to 10 milligrams per dose twice a day with food these are really important um the I think that the most important thing is putting out the fire like put getting the inflammation under control is really where we see the symptom Improvement I always protect the stomach with either an H2 blocker or we put them on strip El

20:18 or DG Alo something like that um and then if they're really severe and they need steroids we can do a short burst just like you would treat asthma an asthma flare we don't hesitate to put kids on steroids when their asthma is out of control it's exactly the same thing with these kids and occasionally we have to go to a 30-day taper which is is in the slide um that is that is when kids are are extremely severe antibiotic guidelines from the Consortium so they recommend you know penisin uh can be used although there's a high rate of treatment failure with that Bellin is on shortage at least in my part of uh the country so we have moved away from that teflex can be used it's better than penisin for the postre exacerbation is great for U and skin my choice uh my favorite one is omnicef um because it

21:04 actually can treat tix and OCD as well as being an antibiotic to prevent further infections I'm not a great fan of augmentin because of it promotes a lot of yeast and diarrhea and things like that but it is very effective another one of my favorites is the thomax um you have to get that Baseline EKG to rule out QTC but after that it's such an effective antibiotic and it's long acting and it's immunomodulatory it's and it can be used two or three times a week as opposed to every day clinda and doxia are really more for the the allergic kids it resistant micoplasma the resistant STP the carriers the dental infection kids and and tick born which again I don't do too much of the tickborne disease but can be used for that and just the studies show that you know early

21:51 diagnosis and and long-term prophylaxis really reduce the risk of progression to disabling chronic neological seila for these kids and so there's so much hesitation I think to use these medicines long term but I think we just wouldn't hesitate to use long-term medications and other chronic autoinflammatory diseases we don't qu question when kids with juvenile R arthritis or croh disease or something like that are on these chronic medications um I think we need to start looking at pants through that filter so these are just some integrative options that we use in our office um making sure the diet is cleaned up Prebiotic and Probiotic foods I use antihistamines they're not part of the Consortium guidelines but they're extremely important again but that histamine disregulation that Mell disregulation seems to be a part of this disease and so I usually put these KS on hydroxyzine I will use peratin for the kid who's food restricted I like Claritin and

22:40 alra badril kind of moved away from using certic and zizal because they really cause a lot of bladder irritation these kids are already peeing every 30 minutes love the flavonoids um which can um definitely stabilize the M cell I moving away from just using net as a rescue medicine or you know just for that first couple of months and then trying to move to cumin and omegas and pasas for the anti-inflammatory making sure we're looking for yeast all the time because again yeast is a dis reggulator and treating with fluc d flucan stattin and I've used a lot of the other herbales and and supplements olive leaf MCT oil garlic and so on and absolutely important is making sure that vitamin D and iron are optimized um that is a huge part of the neurotransmitter uh health and then I

23:26 think if you don't take anything else away from this top but this one slide using SSRS and kids with pant pandas they are extremely labile um when it comes to neuroinflammation and they do not tolerate ssris as regular Doses and so they need to be started really low and slow and I I would say that 25% of the dose might be enough for them so starting low and working up to about 25% of what you normally would use is really important because I see kids come to me from psychiatrists all the time who are on 150 milligrams of of SSRS and they are just going crazy on those doses so and then we just I just listed the other um integrated remedies that we use for anxiety and OCD in addition to SSR so theanine lemon bomb magnesium omegas

24:13 lavender for the anxiety Knack inoco CBD lithium and ashwaganda for those these are things I use quite a bit in our plans just a quick word on tonsilectomy I think my time is running out um it's not recommended standard of care um but it can be benefit icial we know that kids we take tonsils from kids with pandas they have all kinds of cyto kindes in them that don't are not there in kids who are just have their tonsil remove for sleep apnea and and and when we look at what they're growing in these tonsils they've got staff and strap as sorry in addition to strep they have staff and gram negatives and all kinds of bacteria that should not be in the throat so clearly these are repository infection that are disregulated the immune system but this mouse study was so elegant because they took these mice and the nasal associated tissue the nelt

24:59 is what is kind of equivalent in the mouse to the sinuses and the the tonsils nanoids then they indu strep infections in these mice and they found that these th cells differentiated and they actually climbed up through the copon plate along the AL Factory sensory axons directly into the brain and then they these cells released these cyto kindes that broke down the bloodb brain barrier and then these Auto antibodies actually crossed and attached to specific neuronal targets so this is what we hypothesis is happening every time a kid gets infection this is what's happening to them so their blood brain BS getting leakier and leakier and their basil gang is getting more and more targeted that is why The Chronic antibiotic therapy to prevent secondary infection becomes so important so the teeth this is something

25:45 that's overlooked a lot in in in this world it's really important that these kids have a healthy oral microbiome because they strep in the mouth and just like we prophylax patients with heart valve uh abnormalities we recommend prophylax in these kids when they have dental work or they have loss of teeth braces loose teeth I see kids come in in severe regression because they have a loose tooth and so just trying to make sure that that's looked at also and some of the things we do in our office we make sure everyone's on a Xylitol mouthwash or lenes for oral health or a nose spray for sinus health and we Tim make sure they're all on the Bliss K12 like the strep salv Catal probiotics for the oral microbiome prevents covid prevents cavities prevents strep throat so these are more resources for you

26:31 these are the books that I recommend Dr Scott Antoine recently released a fantastic book the green one which is a a really comprehensive guide to managing this in your office Dr Nancy Ohara she's a leader in this field released her book last year I like this book by uh naturopathic doctor Dr Jill Christa light in the dark websites I've mentioned Aspire but there's several and then all the research that I've mentioned in this talk are um these two links that are up there it will take you to all of that research and so just the take-home points I think just to remember it is a spectrum illness so all kids don't have all symptoms if you see a kid with a change or an acute on of tick OCD anxiety and if you see symptoms like this frequent urination with no explanation disg graphia with no

27:17 explanation restrictive food behaviors which are odd they're not body dysmorphic behaviors that's really important to note these are not kids who want to be thin these are kids who are afraid to swallow um sleep School avoidance and the baby talk regression to think of this disease and it's a relapsing remitting course so it's really important to kind of create fluid access with school and mental health services and not allow anyone to blame the kid but establishing the correct diagnosis providing the symptom relief finding the cause and treating it with whatever that may be and then making sure that we're cutting back sort of on some of the medicines that we're using and then just using them for flare so that's kind of the management um guideline so that's in a nut