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Episode 67: Functional Medicine Pediatrician Dr. Elisa Song on PANS/PANDAS DX and Treatment
In this podcast of New Frontiers, I’m talking with Dr. Elisa Song, a functional medicine pediatrician and superb teacher. If you are practicing FxMed, you’re probably seeing more and more kids if your scope allows (even if you didn’t before).
Kids need FxMed, yet there are arguably LESS pediatricians transitioning into FxMed than other disciplines. Thus, working with kids can come with questions – labs, dosing interventions.
Listen as Dr. Song and I gallop through loads of foundational information (and we’ll provide more down the road – a blog, another podcast – we’ll see) as this is a huge, important area for us.
Here, the bulk of our time on New Frontiers is on PANS/PANDAS: how to identify, and what to do.
Both are forms of infection-triggered autoimmune encephalitis. Take a listen, and be sure to comment on iTunes or wherever you’re listening. I’d love to learn your thoughts! ~DrKF
In 2019, one in two children is diagnosed with a chronic condition, from eczema and asthma in infancy to kids who have reflux or chronic constipation. Many more children are being diagnosed with autoimmunity or neuropsychiatric problems.
Using a functional medicine approach with pediatric patients is critical to helping prevent long-term chronic and disabling conditions.
In this episode of New Frontiers, Dr. Fitzgerald talks with holistic pediatrician Dr. Elisa Song about working with pediatric patients in a functional medicine model—and specifically how to work with PANS and PANDAS patients.
Dr. Song is a board-certified, Stanford-, NYU-, UCSF-trained holistic pediatrician; the founder Whole Family Wellness (formerly Whole Child Wellness) in Belmont, California, one of the first and most highly regarded holistic pediatric practices in the country; and the creator of Healthy Kids Happy Kids.
She is also a lecturer for the Center for Education and Development in Clinical Homeopathy (CEDH), Academy for Pain Research, Institute for Functional Medicine, and Holistic Pediatric Association, among others.
In this podcast you’ll hear:
- Atopic allergy phenomenon in children and the march from eczema and hay fever to asthma and eosinophilic esophagitis and eosinophilic gastroenteropathies
- Upswing in autism spectrum diagnosis in the last two decades
- Long-term impacts of shifts in the gut microbiome in infancy (before age 2)
- Understanding, diagnosing, and treating PANS and PANDAS
- Infectious and non-infectious triggers for PANS and PANDAS
- How conventional PANS doctors treat the condition versus a functional medicine approach
- Diagnosing PANS (dilated pupils, piano fingers, etc.)
- How to identify PANS when it presents in less sudden/less acute ways
- Tips for successfully drawing blood from children
- Best lab tests to use for pediatric patients (generally) and specific swab tests and other panels to use for children with PANS and PANDAS
- Questions to ask when taking a detailed history of pediatric patients, what infections to look for, etc.
- How an imbalance in the Th17 immune response plays a role in the pathophysiology for PANS and PANDAS
- Using CBD oil and low-dose naltrexone for Th17 regulation
- Understanding underlying cell danger response and mast cell activation in pediatric patients
- What types of trauma can trigger a cell danger response
- Critical (and often overlooked) importance of the fifth “R”(rebalance) in the functional medicine model when working with kids with PANS and PANDAS
- Understanding the difference between the anti-Dnase B strep antibody lab test and the anti-dsDNA antibody test and explaining that to the lab you work with
- Resisting the urge to over test pediatric patients and the importance of correlating lab tests with clinical findings
- How to interpret lab findings that show elevated quinolinic acid,
- Using ibuprofen and steroid bursts as diagnostic tools
- Posture and core strength as diagnostic clues in pediatric patients
- SPMs (specialized pro-resolving mediators) for kids with PANS and with autoimmune reactivity
- Using supplemental zinc to help pediatric patients who are picky eaters expand their palates
- Using Clark’s rule for dosing pediatric patients
- Cognitive-behavioral therapy importance in treating PANS/PANDAS patients
- Importance of supporting family members of PANS/PANDAS patients, especially siblings
- Complementary and alternative modalities, like craniosacral, aromatherapy, and chiropractic for pediatric patients
Show Notes for Elisa Song, MD
PANS Physician Network Research Library.
In particular, the July 2017 special edition of the Journal of Child and Adolescent Psychopharmacology is dedicated to the clinical management of PANS:
Part I–Psychiatric and Behavioral Interventions. Thienemann Margo, Murphy Tanya, Leckman James, Shaw Richard, Williams Kyle, Kapphahn Cynthia, Frankovich Jennifer, Geller Daniel, Bernstein Gail, Chang Kiki, Elia Josephine, and Swedo Susan. Part II—Use of Immunomodulatory Therapies. Frankovich Jennifer, the PANS/PANDAS Consortium, et al. Part III—Treatment and Prevention of Infections. Cooperstock Michael S., Swedo Susan E., Pasternack Mark S., Murphy Tanya K., and for the PANS PANDAS Consortium.
PANS Consensus Statement with evaluation and diagnosis guidelines:
Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference, Kiki Chang, Jennifer Frankovich, Michael Cooperstock, Madeleine W. Cunningham, M. Elizabeth Latimer, Tanya K. Murphy, Mark Pasternack, Margo Thienemann, Kyle Williams, Jolan Walter, Susan E. Swedo
- KA Williams, SE Swedo, CA Farmer, et al. Randomized, Controlled Trial of Intravenous Immunoglobulin for Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections. Journal of the American Academy of Child & Adolescent Psychiatry, August 6, 2016.
- Basil MC and Levy BD. Specialized pro-resolving mediators: endogenous regulators of infection and inflammation.
- Kozela et al. Cannabinoids decrease the Th17 inflammatory autoimmune phenotype.
- Younger J, Parkitny L, McLain D. The use of low-dose naltrexone (LDN( as a novel anti-inflammatory treatment for chronic pain. Clin Rheumatol (2014) 33:451–459. DOI 10.1007/s10067-014-2517-2
Cell Danger Response/Mast Cells :
Sesame Street: Common and Colbie Caillat – “Belly Breathe” with Elmo
Elisa Song, MD
Dr. Elisa Song, MD is a holistic pediatrician, pediatric functional medicine expert, and mama. In her integrative pediatric practice, Whole Family Wellness, she’s helped 1000s of kids get to the root causes of their health concerns and helped their parents understand how to help their children thrive – body, mind, and spirit – by integrating conventional pediatrics with functional medicine, homeopathy, acupuncture, herbal medicine, and essential oils.
Dr. Song has lectured around the world on integrative pediatrics topics for multiple podcasts and summits, Fx Medicine Australia, Bioceuticals Australia, Integrative Medicine for Mental Health, The Center for Education and Development of Clinical Homeopathy, Academy for Pain Research, Center for Advanced Acupuncture Pediatrics, Institute for Functional Medicine, and Holistic Pediatric Association.
Dr. Song created Healthy Kids Happy Kids (www.healthykidshappykids.com) as an online holistic pediatric resource to help practitioners and parents bridge the gap between conventional and integrative pediatrics with an evidence-based, pediatrician-backed approach.
The Full Transcript
Dr. Kara Fitzgerald: Hi, everybody. Welcome to New Frontiers in Functional Medicine, where we are interviewing the best minds in functional medicine and today is no exception. I am so, so, so, so excited to be talking a really brilliant, down-to-earth pediatrician. Her name is, as I jump into my waxing philosophically here, her name is Dr. Elisa Song. You’re probably familiar with her healthykidshappykids.com site. If you haven’t, get over there because it’s an awesome resource for us as physicians, and it’s also great for parents.
Anyway, I don’t think I’ve had a lot of pediatricians on the show and, as I was pondering that before we started recording, I think I’ve had Dr. Sid Baker and that’s pretty much it. I am going to be pinging Elisa with as much as I possibly can for everybody because it’s a huge source of questions for us, how to address kids using functional medicine. I’m going to give you her background and then we’re going to dive in. We’re focusing primarily on PANS/PANDAS today, but she’s just going to be giving us a lot of useful things to do in practice.
Dr. Song is a holistic pediatrician. She’s a functional medicine expert. She’s a mom. She’s been in integrative pediatric medicine for quite a while. She’s over in the San Francisco area. Her clinic’s called Whole Family Wellness. She’s worked with thousands of kids to get to their root cause of their health concerns. Again, we were dialoguing that now is the time to get in there and do preventive medicine with the potential for autoimmunity or working early on, on GI disturbances and so on and so forth. Basically, it’s a hugely important area for functional medicine.
Elisa has lectured all over the world. She’s got a focus in PANS and PANDAS and we’re going to be putting a lot of attention to that today. I’ve already mentioned it. She’s got a great website, Healthy Kids, Happy Kids. What else? You’re IFM. Are you IFMCP? You’ve been doing IFM trainings forever.
Dr. Elisa Song: Yeah, well, Kara, I have. We were talking offline beforehand and this is really the time that we need to dive into pediatric functional medicine and integrative pediatric work because our kids are just getting sicker and sicker. We don’t have the tools in conventional pediatric residency training to address all of the chronic illnesses that are facing our kids. I took the AFMCP course with IFM.
Dr. Kara Fitzgerald: Way back.
Dr. Elisa Song: Way back in like 2003, 2004. Back then, I was one of the few pediatricians who had gone through the AFMCP and so I really learned over the past 15 years I had to do it on my own, figuring out dosages and testing and interpretation and what’s safe to use, what’s not safe to use. I have all of this experience and I love to share because I am, bottom line, a clinician. I see patients four-and-a-half days a week in my office and they come from, unfortunately, all over the world because there are not enough pediatric functional medicine trained physicians and practitioners in the world.
Dr. Kara Fitzgerald: Well, and especially as you and I were talking about doing general functional pediatrics. Of course, Liz Mumper and Nancy O’Hara, Sid, Dr. Baker, they’re brilliant. I guess what probably happens is that you hone your expertise and then you end up specializing, like Nancy and Liz and Sid.
Dr. Elisa Song: Yeah. They are my idols. When I was first starting out in this private practice…
Dr. Kara Fitzgerald: Yeah. Yeah, without question, all of us.
Dr. Elisa Song: … I started my practice in 2005 and back then, we were called DAN doctors, Defeat Autism Now. They were my original teachers and mentors and they’re amazing. What is challenging now is because they’re facing so many more chronic illnesses than autism and we have this biomedical approach to autism where parents and practitioners who are really wanting to dive into that get a ton of support, but what about the kids who are showing up early on with eczema and asthma in their infancy or kids who have reflux or chronic constipation, kids who are showing early signs of autoimmunity or neuropsychiatric problems?
We need to be able to apply functional medicine to these children so that they don’t go on to develop long-term, chronic, immune, endocrine, neuropsychiatric problems like we’re seeing because the statistics right now, as we sit here today in 2019, we’re looking at, at least one in two kids, if not more, are diagnosed with some sort of a chronic condition. The latest numbers that I saw was that really, if we’re heading along this trajectory that we are going to be facing maybe eight in 10 kids with chronic illness of some sort within the next decade.
Dr. Kara Fitzgerald: That’s extraordinary.
Dr. Elisa Song: Yeah, it’s unacceptable. This is not what we should be having or hoping for our kids. They should be thriving.
Dr. Kara Fitzgerald: The other thing I was thinking of when you just gave those statistics, and then we’ll jump into PANS and PANDAS, but is eosinophilic esophagitis or just eosinophilic gastroenteropathies in general, so the atopic march has evolved from it is eczema and then, I think, hay fever rhinitis and then asthma. Now EOE is in there with onset at like two years.
Dr. Elisa Song: Yes. Absolutely.
Dr. Kara Fitzgerald: That’s insane.
Dr. Elisa Song: It is insane. It’s insane that we are seeing not just more kids with this sort of atopic allergic phenomena, but the severity increasing with the number of kids with anaphylactic food allergies and the numbers that I’m seeing with EOE or EG. I didn’t see EOE in residency and I went to UCLA, which is a quaternary care center. We see the sickest of the sick, but EOE was not really a phenomena. Autism wasn’t either.
When I think back to when I graduated from residency in 2000, that’s less than … I guess dating myself. It’s almost 20 years ago. I was told back then if I saw a handful of children with autism in my career that it would be a lot. I ended up my three-year residency seeing one child with autism. Start my practice up five years later and just exploded and so we’re in this stage now where we can’t ignore this anymore.
You’re talking about this atopic march and this allergic march, one of the studies that I want every single practitioner to read was released last spring, spring of 2018. It was a really large study, nearly 800,000 children in the military and they followed these children. These were children who were given either antibiotic medications or antacid medications within the first six months of life. You think about for me, what I was seeing when I came back from this around-the-world trip back in 2000 thinking I’m going to start my integrative practice, all of a sudden, every kid was being given Zantac. It was approved for infant reflux and so you see the number of children who are being put on antacid medications for “reflux” and I say quote because we need to really think about is there really reflux that needs to be treated.
They followed these children over the next I believe it was four years and the risk of every single allergic disease, from eczema to asthma to urticaria to anaphylactic food allergies to EOE was significantly increased, every single. The researchers know it was likely due, surprise, surprise for us functional medicine practitioners, were likely due to the shift in that early infant microbiome that then, as we know, Kara, in functional medicine, that once you have that shift in your microbiome in that early stage of infancy, if you hit about two or three years of age without having achieved a balance in your microbiome, it is so much more challenging to change.
That early imprinting and education that the gut does to that child’s developing immune system, brain, hormone system can sometimes be irreparable. Not irreparable, I never want to say that because I know there are going to be parents listening to this who are thinking oh, my gosh, they had antibiotics at two months of age or oh, my gosh, they were put on antacid medications. It’s never irreparable. It just gets harder, so if we have this information and we know this, we can intervene early on. Yes, antibiotics can be lifesaving. I would never say don’t give your antibiotics. Don’t give your three-month-old infant antibiotics if your doctor says it’s needed, but let’s do some mop up. Let’s use our functional medicine tools to clean up the damage that’s been done so that they can go on to thrive and have a healthy gut-brain connection, gut-immune system connection, gut-hormone connection.
Dr. Kara Fitzgerald: Absolutely. Thank you for that. I’d like to pop that citation onto your show notes, so if you could just shoot it over to me, that would be…
Dr. Elisa Song: Absolutely. I will send that to you.
Dr. Kara Fitzgerald: That’s such an important thing, and so you know what? To that end, one more comment. I would really like you to, no pressure, putting you on the spot, if you are open to doing a blog for us just on, well, specifically I was thinking about a big question that I’m asked. We have a clinic immersion program where other clinicians and physicians transitioning into functional medicine are tracking with our practice and we talk about peds a lot, how do I dose peds? What I’m I doing? If you’ve got some resources that we could put out there for some of these basic ideas that you’re so experienced in in thinking about what resources to use in functional medicine for treating kids. What else did I have? I was thinking about some of the interventions you like to use, just kind of a general, brief primer. I would love it.
Dr. Elisa Song: Sure. I’d love to. It’s so important because you reach so many functional medicine practitioners and there really are not too many venues for practitioners to dive into pediatric functional medicine.
Dr. Kara Fitzgerald: That’s right.
Dr. Elisa Song: So many practitioners have adults that they’ve treated for Hashimoto’s or chronic fatigue or whatever concern that they have and now these parents and grandparents want to know how do I prevent this from happening to my child or my child is already showing signs of having some immune dysfunction and dysregulation. What can I do? Children are not just little adults, so we can’t just treat them like little, 1/3 of a size adults in the same way.
Dr. Elisa Song: There are different nuances and, of course, taking supplements. There’s lots of different tricks to get supplements into kids, but it’s not just matter of oh, yeah, go on this elimination diet for three months and take all these supplements. We need to really figure also practically as practitioners how can we help our kids and how can we help our parents go through this process together so that their kids can come out on the other side healthy and thriving, but also understanding how to make those healthy decisions for the rest of their lives to become healthy, thriving adults.
Dr. Kara Fitzgerald: Yeah. It is pretty darn extraordinary. Working with peds myself, not exclusively, but they do form a percentage of my practice, to see that, the light turn on, and to see healing and to know that not only have you altered the trajectory or not … Actually, I don’t want to take the credit. This child and the family has altered the trajectory not only of the child’s health, but there’s always this impact on the family. There’s a big ripple effect when the family takes on healing with a child. Then that kid’s existence on the planet and their offspring, it’s just the ripple effect when working with peds specifically, it’s just extraordinary, at least, and here, you get to live that and breathe that.
Dr. Elisa Song: Yes. It has its pros and its cons. I love working with families, but then also sometimes it’s challenging working with families.
Dr. Kara Fitzgerald: Okay. Let’s jump in. I would also, talking about the blog, I’d love to you have you come in and do a teach in for our clinic immersion, so I’m going to bug you about all those things later. We’re going to have like the Dr. Song show over here. Okay. Let’s talk about PANS and PANDAS and let you know as with everything that you’ve mentioned in this intro, these are conditions we’re seeing more and more. Just define it and clarify the difference and just introduce us and then we’re going to jump into how you’re addressing it in your practice.
Dr. Elisa Song: Yes. I do a lot of teaching on PANS and PANDAS to parents and practitioners. I see a lot of kids, unfortunately, with PANS and PANDAS. We have actually right here at Stanford, Dr. Jenny Frankovich is the head of the Stanford PANS clinic. As I’ll talk about, their admission criteria for patients to their PANS clinic is fairly narrow and I think that we are missing so many other children who have underlying PANS and PANDAS but don’t necessarily fit what are considered currently the diagnostic criteria.
Dr. Elisa Song: What is the difference? PANS stands for pediatric acute onset neuropsychiatric syndrome. PANS can have infectious triggers and it can have noninfectious triggers. Now, we’re more familiar with approaching the infectious triggers, so the infectious triggers can include strep. When PANS is triggered by strep, that’s when we call it PANDAS, so PANDAS is actually a subset of PANS. PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, but we recognize that there are many, many other infections that can trigger PANS that are non-strep infections.
Dr. Elisa Song: I will say the strep that we’re thinking of can be in the throat, so classic strep throat, but it can also be impetigo caused by strep on the skin. It can also be perianal and perivaginal strep, which really stems from strep gut dysbiosis. The other infections can include Lyme and its co-infections, herpes 1 and 2, herpes 6, which is the roseola virus, Epstein-Barr virus, mycoplasma is documented, coxsackie, which is hand, foot, and mouth virus, even influenza virus, so we can look for different infections when we’re suspicious for PANS.
Then noninfectious triggers can include environmental toxins, so mycotoxins, heavy metals. These are less well-described, but there are cases of kids with PANS where we just can’t find an infectious trigger so then we need to dive in and look at are there environmental triggers or toxic triggers that are creating these PANS symptoms.
What are the PANS symptoms? Now, the diagnostic criteria…
Dr. Kara Fitzgerald: Can I just ask you before you jump into that, so hang onto that presentation. At Stanford, are they limiting it to PANDAS or have they expanded to consider all of these other potential triggers or, at least, some of them? I know you said that they’re not considering all of them, but then have they expanded beyond just strep?
Dr. Elisa Song: That is such a great question. In the consensus statement of which Dr. Frankovich is part of the PANS-PANDAS consortium, research consortium, they do include in their triggering infection diagnostic evaluation mycoplasma and influenza. They do actually mention Lyme, although many practitioners would wave their hands about Lyme, unfortunately. When you really look at the clinical consensus treatment, it really is still focused on the strep and using antibiotics for strep treatment and strep prophylaxis and so at the PANS clinic at Stanford and for what I’m seeing for more “conventional” PANS doctors, they’re really, really mostly just treating strep. The kids that I see are still going to be on antibiotic medications targeted for strep.
I do see quite a few kids who have viral triggers and there’s not a lot of research being done on what about those kids? We know that viruses are some of the main triggers for the cell danger response that Dr. Naviaux researches and discusses. I would say it’s a bit limiting in terms of how the PANS clinic is treating kids because there’s so many other triggers. Also, when they are accepting kids into the PANS clinic, it’s very difficult to “get in”, but they are really looking at those kids who have an abrupt and dramatic onset of their neuropsychiatric symptoms, like a light switched and overnight they go from a neurotypical child, so they want children who have a neurotypical baseline who then suddenly have OCD, anxiety, rages, food restriction, physical signs like sleep disturbances, urinary problems like frequent urination, handwriting decline, cognitive decline. That is very, very important for research. I completely understand that.
Some of the controversy comes into play with when we look at kids that I see with PANS and PANDAS or what I would diagnose as PANS and PANDAS who have autoimmune markers, who have markers of autoimmune encephalitis, but have a more subtle onset. Very few of our kids, to be totally honest, are completely neurotypical at baseline. What kid doesn’t have some sensory issues or some behavioral issues going on? What kid doesn’t have some underlying anxiety nowadays? Very, very few kids, could you say, are completely neurotypical and then they switched over immediately.
What I see more are those kids who may have kind of a baseline the sensory issues and behavioral issues, some low level kind of chronic anxiety, maybe some separation anxiety. Then all of a sudden, parents notice well, there’s something that’s a little different, but they can blame it on something else like baby sister was born or they started preschool or they started kindergarten and it’s really rough and so there’s always something to blame for this transition and this “phase” except then the phase doesn’t end and things just get worse and worse and worse.
What I would recommend and encourage for practitioners who are out there in the field, if you see children and teenagers where something’s just a little different, if parents say they’re just not quite the same. Something’s different. I don’t know exactly when it happened. It seemed like it was around the time maybe they had a flu or maybe it was around the time that they had a really stressful experience, but if you hear those words that something’s a little different and it hasn’t gotten better, then I would investigate whether or not PANS or PANDAS could be in the mix.
Dr. Kara Fitzgerald: Now, I’m going to guess … First of all, I want to just thank you deeply for that clarification because for all of us in our training it’s this neurotypical and then sudden onset deterioration and what you’re saying is we need to really let that go, that that’s kind of an isolated, less common presentation.
Dr. Elisa Song: Yeah. I totally agree. I think about this one teenager who she’s always had some anxiety. I’d seen her when she was really little. They moved to Texas. Then the family came back and I hadn’t seen her in years, but the mom had reached out because at that point, she was put on a couple of different psychiatric medications and because she was hitting a crisis point where her OCD and her food restriction was getting more intense and she was starting to cut and starting to have some suicidal ideation. The mom just was at her wits end because the meds weren’t helping that much, maybe taking a little bit of the edge off.
When I saw her, she was a different kid than what I had remembered her being as a younger child. The other tip off, too, just from clinically when you look at these children, they are going to be in this fight-or-flight mode, so look at their pupils. If their pupils are dilated, she had these bright blue eyes and her pupils were almost as big as the blue in her eyes. You can look at what are called piano fingers. Just have them extend their hands and see if they have a little tremor in their hands. Now, what was interesting about this girl, she almost had tremors all over her body. She just was a bit shaky and trembling and her motor skills, she used to be a competitive soccer player and a cheerleader, she was having accidents all the time, clumsy, tripping over herself. She had bruises all over herself because she just from that core tone and fine motor and gross motor control, she was suddenly declining and her school progress was slowly declining.
She had very, very, very elevated anti-Dnase B strep antibodies when I checked and so put her on azithromycin, got her on some anti-inflammatories, and literally, now this is one of the cases where you hope for this, that within two, three months, they’re back. Now, that’s not always the case, but for her, that was the case where within two, three months, even after the first week of antibiotics, the parent and the child were noticing oh, my gosh, things are improving way more than when they started psychiatric medications and we watched her anti-Dnase B titers go down. We watched her clinically improve. She’s back to being coordinated, happy at school with her friends, focusing, getting her homework done, she’s playing soccer again.
She went back to her psychiatrist and presented her with this data and the mom and the child were ready to start weaning some of the meds. The psychiatrist told her, “You don’t have PANDAS. There’s no way. It wasn’t sudden enough.” Could you imagine telling a child that, that they don’t have a medical condition that actually was the reason for her worsening and now she knows that she’s so much better given these medical interventions targeting her PANDAS?
Anyhow, I think we, as practitioners in the field, need to stick together and as we get more information and knowledge about how PANS may present in a less than sudden and acute way, we can then shift the dialogue and, hopefully, get more research into these more subacute cases.
Dr. Kara Fitzgerald: I’m going to guess that a lot of the cases, a lot of the patients coming to you with what you’re saying here is there may not be a clear cut illness that they recall necessarily. Would you say that that’s true?
Dr. Elisa Song: Yes. I dig into the history, though. You really try and use your clinical tools, use your clinical history because sometimes parents … Most parents will be able to say well, it was around this time. You ask, “Well, were there any weird rashes around that time, any change in diet around that time? Did you move homes? Was there a spill in the laundry machine, a flood in the garage?” Really trying to figure out other clues as to what you might want to test because the other concern we have with kids is there are only so many vials of blood you can actually collect from a child in one sitting.
Dr. Kara Fitzgerald: Yes. True.
Dr. Elisa Song: Yeah, so I can give you this laundry list of labs to check, but you really want to, in that initial stage, that’s first stage, target what labs you’re going to order, what blood labs you’re going to order because unfortunately, it’s just we can’t take as much blood and it’s not that pleasant for children. All right. When I do order blood work, I always, always also prescribe a lidocaine numbing cream.
Dr. Kara Fitzgerald: Ah, okay. You’re just reading my mind. Yeah, this is incredibly useful. I was thinking about blood draw and how much you’re going to get, how do you do it, and all of that. Okay.
Dr. Elisa Song: Really important to do that because you do not want your child to have a very traumatic first blood draw experience because that will ruin every single subsequent time you need to draw blood. All right. Make sure that you use a numbing cream so that kids are confident and feel comfortable that it’s not going to hurt, that it’s not scary.
Dr. Kara Fitzgerald: The other thing that I also recommended is to call the lab or call the phlebotomy place in advance and ask who there is good at drawing for kids because it’s night and day. It’s massive, can make or break the experience who’s actually doing the phlebotomy.
Dr. Elisa Song: That’s right. That’s right. In the San Francisco Bay area we have our lists of great places and great phlebotomists, but you may not know that if you’re just delving into this pediatric work. Calling around and finding out the names of phlebotomists who are especially good at working with children and making sure that they’re there when your child is going to get the blood draw is really, really important, as well. Not all labs will do test kits either. That’s not just a kid thing. That’s also for adults and knowing if you’re going to order other like the Genova NutrEval, which I don’t typically do for kids because it’s a lot of blood, but if you’re going to do that, you need to make sure that you know which labs are going to accept test kits like that.
Yeah, targeting, trying as much as possible to get the history to know did they have hand, foot, and mouth as a kid? Well, then I might want to check because sometimes the hand, foot, and mouth that they had when they were three could’ve laid the groundwork, that framework for immune dysregulation that then when they’re seven and get exposed to strep created that imbalance and now that autoimmune reactivity and they’re presenting with PANS symptoms. Getting that history, do they do a lot of camping and hiking, then yeah, check for Lyme and co-infections. Check for your mycotoxins if there’s a history of possible mold exposure. Let the history guide which tests you will do on that first round because you can always get more tests, but you really want to, as much as possible, maximize the chance that you’re going to find something actionable with that first blood draw.
Dr. Kara Fitzgerald: Okay. All right. I want to talk about some of the other tests you’re doing because you’ve mentioned gut. You’re mentioning diet, etc. You have a six-step approach, we’re going to include this on our show notes, to PANS and PANDAS. Do you want to walk us through that six-step approach or, actually, and you were also going to talk a little bit about the pathophysiology.
Dr. Elisa Song: I can walk through the six-step approach and include the pathophysiology. We could…
Dr. Kara Fitzgerald: Well, and do a little bit more detail on your workup, include use of your baselines and then maybe some of the functional medicine investigation. Okay. Jump in.
Dr. Elisa Song: In functional medicine, the beauty of functional medicine is that we really can look at the pathophysiology of whatever condition we are approaching with fresh eyes and see with this particular condition, what do we understand currently about the pathophysiology? What’s happening at a cellular level? What tests might help elucidate whether or not that’s going on with their kids and what pharmaceutical or natural interventions can we use to rebalance what’s going on?
For any functional medicine practitioner who’s listening right now, whatever your kids present with, whether it’s autoimmune encephalitis, PANS or PANDAS, which is an autoimmune encephalitis, or whether it’s eczema or whether it’s Crohn’s disease you want to look at the pathophysiology and then see where are the tests that might appropriately figure out if that’s going on for my kid and then what supplements, what medications might be useful.
With the pathophysiology for PANS and PANDAS, we know that there is an imbalance in the Th17 immune response, so that does play a role. We know that the Th17 immune dysregulation is involved in many, many autoimmune illnesses, including rheumatoid arthritis and multiple sclerosis and there is evidence that with PANS that Th17 immune dysregulation is involved. Then we look at well, what are the points of intervention there, well, we could use things like CBD or low dose naltrexone, which can all impact that Th17 regulation.
We know that there is also this underlying cell danger response and mast cell activation for I would say for all of our kids, but I guess nothing is ever all, but when we understand the cell danger response as presented by Dr. Naviaux and I would highly recommend if you have not read Dr. Naviaux’s work, Dr. Naviaux, Robert Naviaux, and it’s spelled N-A-V-I-A-U-X. It’s going to be in the show notes. He has two articles that I think are must reads for any practitioner who’s working with adults and children with chronic illness. The first one was released in 2014 in the journal Mitochondrion . It’s titled “The Metabolic Features of the Cell Danger Response,” so that sets down the ground for what is a cell danger response. His second article just came out last year and it’s in Mitochondrion . It’s called “Metabolic Features and Regulation of the Healing Cycle: A New Model for Chronic Disease Pathogenesis and Treatment.”
What these show and what Dr. Naviaux shows is that the cell danger response can be triggered by many, many different kinds of insults, whether it’s physical trauma, chemical trauma, or infectious trauma, even emotional trauma. You have these cell danger response activities that are occurring, which are normal adaptive responses to injury, to danger. It’s our cells’ primitive way of dealing with this danger and responding and healing.
What happens for some of us and many of us nowadays living in our “toxic” world, unfortunately, because things like glyphosate and artificial colors have been shown to also trigger the cell danger response and so we’re living in the state where the cell danger response is perpetually activated. Then if we have these infections that we’re not able to deal with, we have then these symptoms that show up and for kids with PANS and PANDAS, it’s these neuropsychiatric symptoms. For kids with autism, it’s other neurodevelopmental symptoms. It may present differently, but the bottom line, it’s still a matter of the cell danger response not being able to shut off, not being able to go through with all its various stages and then heal.
We may be dealing with, if it’s years later after the initial infection, it might be that we’re dealing more with the cell danger response and mast cell activation and not necessarily the initial infection. As we go through the treatment and you’re working with kids with PANS or PANDAS, you want to understand it’s not just about killing, killing, killing the bugs that are causing PANS or PANDAS. It’s about repairing what’s going on at a cellular level because there may not be a lot to kill anymore, but we need to do a lot of mop up to get that immune system balanced and working again and this…
Dr. Kara Fitzgerald: That’s an – go ahead. Finish that thought.
Dr. Elisa Song: Well, this is where functional medicine has the key to really heal our children because in academic centers like the Stanford PANS clinic, which I have huge and immense respect for, but they’re focused on the killing and immunosuppression. They are working with immune modulation, too, with IVIG, but IVIG is not necessarily accessible to all our patients. Functional medicine really gets at well, how do we not just reduce the inflammation, reduce the bugs that are causing all of this inflammation and triggering this response or get rid of the toxins? How do we really not just do mop up, but healing and restoration at the cellular level so that with PANS, especially, which is a waxing and waning condition and flares in their psychiatric symptoms are more the norm than complete remission. How do we get our kids to a state where they can have a cold or flu and have it be a normal cold or a flu where they feel crappy and they feel yucky for maybe several days but they don’t get triggered into a massive flare of their OCD and anxiety.
Dr. Kara Fitzgerald: Thank you. I just want to underline that and exclamation point that. Okay. My question is this is a dialogue that we’re having in functional medicine all of the time and that is teasing out when we are spending a lot of time in the remove of the five or six Rs, when we’re going after, when we’re doing aggressive killing and when we’re not. Not only is this big in PANS and PANDAS, as we’re talking about, but I would love to have your thoughts on because I think we could probably extend it to looking at Epstein-Barr or cytomegalovirus.
We’re looking at infectious triggers, that broad spectrum of infectious triggers that you outlined in the beginning as not only leading to autoimmune encephalitis, but also many of the chronic conditions that we’re seeing today in general and this piece on when are we doing the heavy lifting there with kill and when are we actually doing this full tilt functional medicine approach. A lot of us are doing all of it, but it’s possible that we’re spending more time than need be in the kill because as you say, that journey is done or the volume is turned down on that acute infection and now this chronic danger response is turned up. What are your thoughts on that?
Dr. Elisa Song: Oh, so important. When I took my first IFM course, it was called the four R approach.
Dr. Kara Fitzgerald: That’s right. We’ve added a couple.
Dr. Elisa Song: That’s right. There was no fifth R. What is the fifth R? Over these 15 years of practicing, really and truly, I believe that the fifth R, that rebalance, that restoring the mind-body-spirit connection, that that is the ultimate piece that will get our children and adults to that final healing and also keep them there because we don’t just want to get them “whole” and healthy and well just to have them relapse with the next insult and so it’s this piece, this piece of really how do we get back that emotional and spiritual connection to our health that is, I think, the most important, but the most challenging because we don’t have a lot of tools in our toolkit to address that as conventionally trained practitioners initially.
This is where we’re working into also the work that children and adults have to do to get well. It can be so much easier to pop a pill. It can be relatively easy to change your diet. It can be relatively easy to remediate the mold from your house, but then to actually take that next step and do the work of meditating, being mindful, getting enough sleep, exercising, connecting with family and community, that doesn’t “look like medicine” when we’re talking about it from a conventional or a functional medicine standpoint.
It’s not enough to just pay lip service to that and say you know what? I recommend that you download the Calm app and do 20 minutes of meditation a day. We need to really educate ourselves on why this is so important so that we can educate our parents and our patients and our children so that they really get and understand and know how truly and fully important it is to focus on this. It’s not the last kind of bottom of the totem pole step. It’s way up there if we really want to get healing going and staying.
Dr. Kara Fitzgerald: Thank you. Thanks. I want to flesh out the steps because I know people are going to really … I just want to circle us back to this. I’m assuming, Elisa, that you’re incorporating … I’m sure even in step one while you might be going aggressively after removing the infection if you’ve determined it’s there and active and you have to, but you’re probably also introducing them to the idea of breathing or calm, right?
Dr. Elisa Song: Totally. Totally. Yeah. Yeah.
Dr. Kara Fitzgerald: Okay. Go ahead. Talk to me.
Dr. Elisa Song: Because I want to clarify that these steps are not necessarily sequential. It’s not that you have to do step one first and you can’t do step six. These are just different and I guess I should name them differently. They’re not necessarily steps. They’re different touchpoints. They’re different strategies that all need to be incorporated into a whole and comprehensive treatment plan. The first, for lack of a better word I’ll call it step right now, but the first step with PANS and PANDAS and we really could broaden this out to any inflammatory condition for kids or any immune dysfunction in kids, but when we’re talking about PANS or PANDAS, we want to know what first step to identify and treat whatever the initial triggers are, whether it’s infectious or toxic. Again, we’re going to let history be our guide. The reason this is important is that we need to know what are we treating. What are we using antimicrobials for if we’re using antimicrobials?
With that, for PANDAS, we’re going to be doing throat swabs, nasal swabs, and anal swabs for strep, doing a full culture, not just a rapid strep, but a full culture. I have many, many kids who their strep infection was really purely just perianal or perivaginal and if you don’t work with a lot of kids what does perianal or perivaginal strep looks like. If you look at their bottom, it literally looks like someone took a red pen and outlined a circle perianally or perivaginally and filled it in. It’s a sharply demarcated ring of erythema. So many parents have no idea that that’s strep. They just know their kid’s bottom is a little uncomfortable or itchy or sometimes painful. They put diaper cream on it or a little calendula. It gets a little better. Then it gets a little worse. You always want to look there, as well.
You’re also going to be checking your blood, an antistreptolysin O and an anti-Dnase B strep antibody. Now, if your labs are not familiar with the anti-Dnase B antibody because it’s a very, very, very old test, it’s what we used to use to check for rheumatic fever in kids with strep and the post-strep glomerulonephritis, but it is an autoimmune marker as a result of strep and now we’re using it as a marker for PANDAS. You want to make sure to check with your lab and clarify that it’s the anti-Dnase B strep antibody, not the anti-dsDNA antibody, the anti double strand of DNA antibody. I did have labs confuse that in the beginning, but now the labs around me, they know it’s an anti-Dnase B strep antibody. Just make sure you clarify that.
I do check, if it’s relevant in the history, quantitative, you want quantitative, you want the numbers, quantitative IgG and IgM antibodies to various infections. The most common infections that I’ll see are herpes 6, herpes 1 and 2, mycoplasma, and Epstein-Barr, but you also want to consider parvovirus B19, coxsackie A and B, CMV, influenza, and, of course Lyme and other tick-borne infections. I would say Lyme and tick-borne infections are also on the more common range.
I typically check infections first, but then if there’s a history of mold or heavy metal issues, then I do check the Great Plains urine mycotoxins. Heavy metals, I’ll start with the urine porphyrins test. I don’t start with an initial urine toxic metals with the challenge.
Dr. Kara Fitzgerald: Where are you getting the porphyrins panel from?
Dr. Elisa Song: I use Doctor’s Data.
Dr. Kara Fitzgerald: Okay. Okay. Good.
Dr. Elisa Song: If you’re going to do a challenge test, which again, it’s not my first line. The reason I don’t do a DMSA challenge as a first line is because I just in this early stage, I don’t really want to rock the boat too much. I use the urine porphyrins test as an initial guide to see if I’m suspicious about heavy metals and then I decide whether or not it’s the right time to do a challenge test with the urine toxic metals.
There is a panel by Molecular Labs called the Cunningham Panel. Madeleine Cunningham found that there were four markers, one enzyme, CaM kinase II and three, actually four autoimmune antibodies, two anti-dopamine receptor antibodies, an anti-lysoganglioside antibody, and anti-tubulin antibodies that seem to be correlated with PANDAS. There is some controversy around this testing now and the Stanford PANS clinic used to test all their kids with the Cunningham Panel and now I believe they’re no longer using it for diagnostic criteria because they were finding that even some kids who didn’t have “PANS or PANDAS according to the criteria of elevated antibodies”.
Well, what I would say to that is why on earth are kids making autoimmune antibodies against parts of their brain? Whether or not they fit into the diagnostic criteria for PANS and PANDAS, I kind of don’t care. I shouldn’t say that so flippantly. I do care because we need it for research. However, when we’re in the frontlines as functional medicine practitioners, what I tell patients and parents when they come in yes, it matters to me what you’ve been diagnosed with so I can look into the pathophysiology, but on the other hand, I don’t really care because I’m still looking at all the underlying biochemical imbalances that are going on regardless of your diagnosis, but your diagnosis doesn’t tell me how to treat you. It just tells me what things that I might want to consider in addition to really doing the functional medicine detective work.
Dr. Kara Fitzgerald: Thank you. I think that’s just a really incredible point and it would be a shame if that test is thrown out because the criteria is so narrow.
Dr. Elisa Song: That’s right.
Dr. Kara Fitzgerald: That would be a great, great loss. Now, if you do that test or some of the other standard labs that you’re looking at where you’re seeing high titers, are you concur … Well, even just presenting to you and you have a strong suspicion of PANS or PANDAS are you assuming leaky brain, leaky gut, like is that just in your list of issues that you’re going to be addressing?
Dr. Elisa Song: Yes, absolutely. Absolutely. I would say virtually all these kids are going to have some element of a leaky gut and by virtue they have a leaky brain and so part of the workup initially is also a comprehensive stool analysis, whether or not you use Genova, their GI Effects, or Doctor’s Data, their comprehensive stool analysis. I have seen kids where even if they don’t have outward signs on their bottom, they don’t have perianal or perivaginal strep, they have gamma and alpha strep in their gut, so that may be the PANDAS trigger, especially if you culture their nose and their mouth and their perianal…
Dr. Kara Fitzgerald: You haven’t found anything.
Dr. Elisa Song: … and it’s not there, but they have, let’s see, they have elevated antistreptolysin O or anti-Dnase B antibodies. It may be that it’s what’s in their gut. Regardless, I’m also looking at other elements of gut dysbiosis and gut functioning because we know that Klebsiella, Citrobacter, there are various bacteria that can predispose to autoimmune phenomena. Even if they don’t have strep in their gut, if they have Klebsiella or Citrobacter and they’re showing this autoimmune reactivity, I want to clean that up because I want to make sure that we don’t have any persisting autoimmune triggers. I had one child, actually, the whole family, unfortunately, and clearly there’s something going on environmentally because this family, the two brothers and the sister and the mom were all diagnosed with rheumatoid arthritis, the daughter, as well, Crohn’s. It was not until we treated the Klebsiella in their guts that they all went into remission, which was remarkable.
Dr. Kara Fitzgerald: That’s extraordinary. Yeah, that’s a little bit of the exception in my experience, but I also want to underscore … What I should say is the exception is that you find a trigger that’s in everybody’s guts and then you address it and you see full turnaround. That’s a really awesome protocol.
Dr. Elisa Song: Yeah. The cases that you hear at presentations or in interviews like this, for practitioners listening, there are not many miracle cures. Most of it is you plug along. You work with your patients. There are ups and there are some downs and you just hope that the ups are higher than the downs so you keep progessively moving in the upward trajectory. Now with…
Dr. Kara Fitzgerald: Well, and you’re addressing these various imbalances that you’re finding. I guess what I’m saying, and the reason this is front of mind and this is turning out to be a long podcast, but the reason that this is front of mind that I think we need to be mindful around finding dysbiosis because we’re going to find it in everybody and decide in diagnosing systemic conditions based on the presence of dysbiosis. You kind of need to tease out and so one of the things I want to underscore that you said is that you’re seeing, well, A, you’ve got this very clear clinical picture and B, you’re also seeing the autoimmune titers. In your case, you’re looking at ASO and, specifically, the anti-DNA. Is it the anti-DNA B?
Dr. Elisa Song: Yeah, anti and then capital D, capital N, capital A, lowercase S, lowercase E, and then a separate capital B, anti-Dnase B.
Dr. Kara Fitzgerald: Okay. Okay.
Dr. Elisa Song: Now, Kara, your point is so, so great. I really want to emphasize that, too, that when we’re doing this testing, when I’m spouting off different tests, it is not to do every single test under the sun and treat the test. You need to correlate what you’re finding on tests clinically with what’s going on with your patient. You don’t want to treat individual test numbers. You need to figure out, try to assess what are the priorities here? What are the top two, three, four, maybe five things that need to be addressed because once you address the key imbalances, many of the other imbalances will fall into place.
What I worry about, and it is a worry of mine, that as we’re training more and more functional medicine practitioners, how do we treat that approach, that kind of really looking at the whole picture? How do we really make sure that functional medicine doesn’t become a mirror image of conventional medicine where we’re reductionistic. We’re looking at labs and we’re saying oh, you need zinc because of this imbalance. You need alpha-lipoic acid because of this imbalance. You need whatever other things and so patients come out with a list of 50 different supplements, which is not going to be helpful.
I want to make sure that practitioners know not to be reductionistic and especially with children. Children are amazing because for the most part, and I’m going to knock on wood on my desk here, for the most part, children are going to respond faster or more effectively to your treatments than adults because they don’t have as many years of garbage in their system. They don’t have as many years of immune dysregulation and this cell danger response that is being triggered over and over and over again and really creating that cellular memory of inflammation and stress, so we can reverse things more easily.
It’s not always easy and there are some kids who are really sick and you’re beating your head against the wall saying what am I missing? What am I missing? Once you start seeing children and I want every practitioner to feel comfortable seeing children because you can do so much for them and that’s where the fear comes in. Am I dosing right? What about these medications? Is it safe for children? The training is so needed from that practical level because we need more practitioners out there doing this for kids.
Dr. Kara Fitzgerald: Yeah, and once you move into functional medicine, the reality is is if you’ve got it within your scope to work with kids, the parents are going to be knocking on your door. It’s just unavoidable and we need to. We need to. We just need to have room in our practice to really embrace working with kids.
Dr. Elisa Song: That’s right. Just a call out to all of you practitioners who are thinking about going to peds, I get calls literally every day, emails every day of people, parents all over the country, all over the world saying, “Is there someone like you that I can see?” If you guys were there, I would send patients to you, so for sure. That was kind of the step one that we got into in terms of urine. I do do urine organic acid testing because that sometimes, as you know, sometimes you do a stool analysis, it shockingly looks fine, but then you do the organic acid testing, like oh, my gosh, look at all these dysbiosis markers.
Also, it is a better, not a better, but another way to assess mitochondrial function, which is so important when we’re trying to manage that cell danger response, look at methylation, look at detoxification and oxidative stress, so it really does help guide me. Pee is easy. It’s a little harder for kids who aren’t potty trained and you can use it for kids under two years of age, but, that being said, it’s a relatively easy test. It’s painless. Kids pee all the time. One of the markers on the urine organic acid test that you may not be paying too much attention to, but when I’m suspicious for PANS, if I see an elevated quinolinic acid, that does give me pause and look to see are there other signs of neuroinflammation and should I be suspicious for PANS?
Dr. Kara Fitzgerald: Absolutely. Thank you. Yeah, thanks. I do think that it’s a marker whose time has come, extremely useful.
Dr. Elisa Song: Yeah.
Dr. Kara Fitzgerald: Okay. I want you to walk us through the remainder of the steps, what you’re thinking about, and then also just give resources. I know you’re going to actually be teaching and we’ll be able to make some of this content where you really do a nice drill down available, too, or, at least, we’ll give links on all of that. Okay. Go.
Dr. Elisa Song: Let’s whizz through the next steps. The next stage is putting out the fire, reducing the inflammation because these kids’ brains are on fire. They’re inflamed. They’re not feeling well. We have tools for that. I do use for kids who are in severe inflammatory distress, I do use steroid bursts, three to five days, two milligrams per kilogram of prednisone, up to 60 milligrams for kids just like you would a child who’s having a severe asthma flare. That can be a tool to use just to quickly put out the fire. It doesn’t fix things, but it lets kids have a little reprieve.
Dr. Elisa Song: Also, using NSAID medications like ibuprofen or naproxen can work very well, too. In fact, if you’re not sure if your child has PANS and the labs are kind of equivocal, maybe the Epstein-Barr titers, the IgG levels are high, but you’re not sure if they’re significant, what I’ll do is a trial of ibuprofen, 10 milligrams per kilogram three times a day and have parents do it consistently for a week and notice what their neuropsychiatric symptoms are doing. Is handwriting improved? Are pupils less dilated? Are they less anxious, less OCD, able to eat dinner a little bit, so that can be a diagnostic trial using ibuprofen or even steroids.
What are some of the anti-inflammatories that I use? Of course, your omega-3 essential fatty acids. I do use quite a bit of curcumin. Quercetin can be a great anti-inflammatory, as well. You can’t forget the power of food. So many of our kids are just eating junk. That’s just the standard American diet, but really, really focusing on getting that rainbow of phytonutrients and antioxidants with smoothies and sneaking it in as much as possible and getting the junk out really, really important. Many of these kids are going to be highly reactive to dyes and artificial flavors and preservatives, so it’s really important to get those out.
Dr. Kara Fitzgerald: Are you doing a fairly involved kind of an elimination diet? I know working with kids that can be somewhat challenging. What would be kind of a foundational diet you’re going to likely prescribe with somebody with PANS?
Dr. Elisa Song: The foundation is going to be just like for adults, gluten and dairy free. We have to try that, especially if there are cravings, kids who are craving cheese, cheese, cheese, milk, milk, milk. You got to figure out how to cut that out. Also, getting rid of any of the artificial dyes, colors, dyes, flavors, and preservatives really important, and reducing sugar, so I’d say those are the four big things to hit, which is not very different than for adults. Then I may do a food sensitivity panel. I use Alletess because it’s very cost effective and it does seem, well, to be accurate correlating with some of the symptoms that I see in kids.
Dr. Kara Fitzgerald: Good.
Dr. Elisa Song: Then the next step is going to be immunomodulation, so once you put out the fire or reduce the flames to kind of an ember, then we need to keep the fire down. We need to keep it from developing into another firestorm, another forest fire, and so the “conventional” treatment would be IVIg, IV immunoglobulin, which can be very effective for some kids, although what’s interesting is I’m not finding it to be as effective as I would hope for many kids. I think it can be helpful. It can be a game changer for some, so you definitely want to consider that. It’s also very expensive. It’s also very challenging to get covered by insurance.
You need to make sure that you’re using treatment doses for PANS which are going to have immunomodulatory effects and that’s a high dose, high dose IVIg, which is two grams per kilogram over two days. Now, you don’t want to use what are called replacement doses or low doses if you have, let’s say, CVID, combined variable immunodeficiency. The replacement dose, because you have hypogammaglobulinemia, is going to be 500 milligrams per kilo once a month, but some studies are showing that low doses of IVIg can actually worsen PANDAS, so you want to do the high dose. Again, it’s invasive. It’s not always accessible. There are lots of side effects with IVIg. However, again, it can be game changers for some. What I…
Dr. Kara Fitzgerald: Like what percentage? What percentage is it game changer for?
Dr. Elisa Song: Oh, my gosh, that’s a tough one and I think it depends on the practitioner, but I would say in my practice, it’s probably been maybe 1/3 of kids do great. I’ve had some kids where they get the IVIg and within a month, you’re like wow, that was amazing. It was a reboot. You want an immune reset. For some kids, maybe a little improvement, but you’re like oh, was that because of the IVIg? Was it not? I have asked parents. I did last year for PANDAS Awareness Day I had a bunch of parents with me in a room and we did a live parent panel. I asked each of the parents what they thought the game changers were and the game changers were one parent said the steroid bursts. Steroids, of course, they’re like magic, but they’re not going to do anything…
Dr. Kara Fitzgerald: They can be, yeah.
Dr. Elisa Song: Several of the parents said it was either low dose naltrexone or SPMs, these specialized pro-resolving mediators, which I use quite a bit of for my kids with PANS and with autoimmune reactivity. That’s the only company that makes it right now that has it formulated as a supplement is Metagenics. We may see more down the road, but I believe that they have a patent on it for the time being. That can be a total game changer in terms of keeping the inflammation down and regulating the immune response.
Dr. Kara Fitzgerald: How are you dosing those? I’m assuming you’re going a little bit more aggressively.
Dr. Elisa Song: Yes.
Dr. Kara Fitzgerald: Okay.
Dr. Elisa Song: Well, so it used to be that they were little, tiny capsules, which were great for kids learning how to swallow and I could dose it anywhere from one to sometimes four capsules twice a day for my bigger kids. Now they’re larger capsules. They’ve consolidated it, so they’re larger capsules, so we’re kind of limited on the dose. It’s hard to squeeze out half the gel and know how much you’re getting, so I’ll typically start with one capsule twice a day, kind of regardless of size. For bigger kids, I’ll do two caps twice a day. Then we’ll do that for maybe a week or two and see how they’re going and see if we need to maintain that or we can drop them down to maintenance, to one a day.
Dr. Kara Fitzgerald: Wow. Okay. That’s great. I like using SPMs, as well. I guess I tend to start pretty aggressively and that’s fabulous that you’re not finding that’s needed and maybe…
Dr. Elisa Song: Yeah, and that, too, in terms of medications and supplements for kids, it’s just like adult patients that you guys are all seeing. It can be really interesting. Some kids just need a touch and they have huge responses. Other kids are like, my gosh, I’m giving more than I might an adult in order to get a response. You just have really work individually with your patient. There’s no standard, but for most kids, I do one twice a day is a great start.
Low dose naltrexone, I’ll start low. Maybe some kids I’ll start like 0.5 milligrams and then gradually work them up to typically a maximum of about three or three-and-a-half milligrams. CBD and also Chinese skullcap have also been shown to help modulate that Th17 response that we’re finding to be abnormal for many kids with PANS and PANDAS. When you’re using Chinese skullcap I don’t have right doses. The way I typically dose, if there’s an unknown, is it’s not perfect, but there’s a rule called Clark’s rule where you take the kid’s weight in pounds, divide it by 150, like the average adult weight, and then that’s a percentage of the adult dose that you would use. For a 50-pound child, they would get about 1/3 what you might dose for your adult patient. It’s not perfect and we know that kids’ livers process things differently. Their kidneys process things differently, but it’s the best we have sometimes.
Dr. Kara Fitzgerald: Yes, and I think it’s a reasonable, kind of a safe starting point if you’re just moving into treating peds because when you-ok, ok
Dr. Elisa Song: Yes. Yeah, absolutely. I totally agree with that. The skullcap, I just want to emphasize that it’s Chinese skullcap. It’s baicalensis, I believe, is the herbal name, but there is also American skullcap or it’s called lateriflora. You want to use the Chinese skullcap because that’s the one that’s been shown to have more of the Th17 modulating effects. American skullcap is great, but when we’re talking PANS, we want to use the Chinese skullcap.
The next step is really doing all of our functional medicine work, really looking how do we balance out the core clinical imbalances with optimizing diet and whatever nutritional insufficiencies or deficiencies you find on testing. Many, many kids are going to be low in zinc. I check the red blood cell zinc. If you have low zinc, it’s going to affect appetite. It’s going to affect taste. Our pickiest kids, often just by giving them zinc, you’re going to be able to open up their palates. It’s going to worsen sensory issues, auditory sensitivities or the kids who can’t stand the tags on their back to the seams in their socks. Also, of course, you need zinc for healing any lining, like your gut lining.
We’re, of course, addressing leaky gut with your five Rs, supporting methylation. Mitochondrial support is really important because with the mast cell danger response, the first wave of that cell danger response is really a stress on the mitochondria and leakage of different chemicals like ATP. We also have histamine leakage going on, which is where the mast cell activation comes into play, so supporting your mitochondria, supporting mast cell stabilization with quercetin and luteolin.
Dr. Kara Fitzgerald: Actually, SPM has some nice … Well, I don’t know about mast cell stabilization, but if there’s a clear IgE kind of bias, if allergies are in the mix, too, there’s some nice research on SPM for that.
Dr. Elisa Song: Yeah, and you know what? So many kids with PANS and PANDAS, they flare big time during allergy season, so during springtime and pollen season, I have a lot of kids who flare and parents are like why are they flaring because they’re not showing typical nose or eye symptoms, but they’re showing it in their neuropsychiatric symptoms because we have to remember histamine is a neurotransmitter, too.
Dr. Kara Fitzgerald: Yes, yes, yes. Well, and it’s going to increase leaky gut and then, by extension, leaky blood-brain barrier. Yeah, wow, that’s really good. That’s a handy pearl. Can I just say, Elisa is mentioning a lot of areas to look at and if you’re feeling overwhelmed, if you’ve got your functional medicine training, just lean on your matrix and, as she underscored a lot in the beginning of our conversation, you’re taking this careful history, so you figure out the areas you need to zero in on and you map it to the matrix. That’s going to also give you the support on the areas you need to zero in on so that you don’t have to do a lot of everything.
Dr. Elisa Song: Yes. Thank you so much for saying that, Kara, because when we start off in functional medicine, we feel like and I did this, too, over a decade ago, you feel like oh, my gosh, I have to do every single test under the sun and I have to do every single supplement. That’s a great way to learn, absolutely a great way to learn, but now over the years I’ve learned enough patterns where I actually do very little testing, to be totally honest. For my PANS kids, I want to know infectious titers, for sure and I want to make sure that they don’t have any outright nutritional insufficiencies or deficiencies. You can’t tell what the gut is like without doing a stool test, but I don’t do a ton of testing.
Am I going to support methylation anyway? Of course because I’m going to presume that the methylation is stressed, even if they don’t have a family history of autoimmunity or cancers or autism because just by being sick it puts stress on your methylation pathways. Am I going to support the mitochondria? Most likely, but some of the clinical signs, what I ask in my history for mitochondrial symptoms, I ask kids first of all how much energy do they have. Kids should have a lot of energy. They should be running around. Parents who say, “Yeah, they’re really tired all the time,” or kids say, “I’m really tired,” and they’re laying on the floor all the time, that’s not normal.
Some parents will say, “Oh, my gosh, they have tons of energy. They’re running around all the time.” Then the next question is well, what is their endurance like because many kids with mitochondrial issues, they can play their soccer game. They can go full force down the soccer field, but afterwards, they come home and they crash out on the couch and they can’t do another thing all night, whereas most kids, they can play a full soccer game and they can come home and jump on the trampoline and they can have a play date.
Dr. Kara Fitzgerald: Yes. That’s right. That’s right. The other clue, too, is muscle soreness. That’s a big red flag. There’s a lactic acid buildup in the kid and it shouldn’t be there.
Dr. Elisa Song: Yeah, and also looking at what is their core strength and how do you assess that? Just look at how that child is sitting. Are they slumped over, hunched over so they can’t engage their core and sit up with nice posture? Now, as kids get older, sometime in elementary school, you look at toddlers, they have perfect posture, and babies, but then somewhere in middle school and elementary school they start to slump forward. Then you ask them let’s sit up nice and straight. I put my back to their tummy or the chest in their back and see if they can hold that posture and some kids can’t. Or if they’re sitting in what’s called a W position on the ground where they’re sitting with their bottom on the floor, knees in front of them, and their feet are splayed out looking like a W. Those are all potential signs of mitochondrial issues.
Dr. Kara Fitzgerald: Is that right?
Dr. Elisa Song: Yeah, so just look at the history. Look at clinical clues. You don’t have to test everything, but let history and clinical signs be your guide for what you’re going to address first and target. Then with the next step, this is really balancing out that mind-body-spirit connection which is so important we mentioned, but that also supports healing the cell danger response because what are some of the ways we can heal the cell danger response? It’s really to help support the parasympathetic nervous system. When you engage the parasympathetic nervous system, you support your mind-body-spirit connection and you support the overall healing and reduction of inflammation.
For kids with PANS, one of the arms of treatment that is recommended by the PANS Research Consortium is cognitive behavioral therapy, which is absolutely key. Also, I encourage patients. I give children different apps to do meditation that are really kid friendly. Just laying on the ground grounding every day, a nice patch of grass, being outdoors, taking those big belly breaths. The number of kids who don’t know how to belly breathe is astonishing. I just have kids, it can be easier when they’re laying down on their back, putting their hand on their belly and ask them to take a really deep breath without moving their chest and without moving their shoulders. Some kids can do it easily, but many, many kids can’t. Just having them focus and do it with their parents every day for five minutes we’re going to practice our belly breathing. There’s actually a really cute, for your younger kids, a cute Sesame Street video with Elmo and a couple of musicians with a song about how to belly breathe. I’m going to give you that link, too, because it is awesome.
Dr. Kara Fitzgerald: Yes, I’d love it.
Dr. Elisa Song: Whatever we can do to really help kids stay connected with their bodies and their brain and also help the family with family therapy. Don’t forget about the sibling. When you have a sick child, often the healthy child is I don’t want to say neglected, but they’re doing well. They’re doing great and they’re really helpful and so we’re not paying as much attention to them, but we really want to support them through the emotional trauma they’re going through also because for many of them, they feel like they’ve lost their best friend. They’ve lost their brother or sister who’s not themselves anymore, so really working with the family and working with the schools to help support that family unit and support them from becoming too isolated because parents, families, children who have PANS and PANDAS, they’re much more likely to have unanticipated departure from school and homeschooling because they just don’t have the school system that works for them.
Then the final step and this is not so much functional medicine, but this is really integrative medicine, our bodies and our brains and the way our bodies work are so complex and we’re just at the tip of the iceberg of really understanding how our bodies work from an energetic standpoint, but really using your integrative tools that you have or that you have in your community. I do acupuncture in the practice. I think that can be a great way to balance out the vagus nerve and really help with that mind-body connection. I do use homeopathic medicines. Essential oils are really popular and when used appropriately, they can have very therapeutic benefits. Cranial osteopathy, chiropractic, whatever you have in your toolkit yourself or have great practitioners who understand how you work and you can work as a team. I would encourage you to step out even broader outside the functional medicine box. I applaud everyone who’s listening because you’ve already taken a huge, giant step in learning how to help your patients and move outside the conventional box, but broaden even further and really look to see are there other complementary and alternative modalities that could also help my patients because there are so many other possibilities.
Dr. Kara Fitzgerald: Unfortunately, we could just turn this into a daylong seminar, but you’ve just been really just so generous with your teaching today. I just feel like I’ve learned a lot. I think one of the most lovely things that you’re imparting here in your calm words of wisdom is that we can do this. Even if you haven’t addressed PANS or PANDAS and you’re feeling kind of anxious about it, you’ve got it. There’s tools here that you’re familiar with. You can bring them together and we can do it and really help these kids.
Dr. Kara Fitzgerald: Well, Dr. Song, it was just lovely to get to spend this time with you today. Thank you so much.
Dr. Elisa Song: Oh, yeah, I lost track of time because it’s so fun talking to you. I’m honored, so honored to be on your podcast and so honored to help you spread the word about pediatric functional medicine and getting more practitioners on board because it is so worth it.
Dr. Kara Fitzgerald: Yeah, absolutely. It is so worth it and our conversation is going to continue. I’m going to ping you. We’re going to get some more. Go to the show notes. There’s a lot of stuff there from Dr. Song’s practice that you can access, including the references that’s she’s mentioned today. We’re going to, if you’re interested in it, I would love to do some sort of a blog with you and then bring you on for our clinical immersion folks for a teach in. I just want to continue this, our engagement with you, because it’s incredibly important area for-
Dr. Elisa Song: Oh, I would love. I’m not going anywhere. You’re not going anywhere, so we have …
Dr. Kara Fitzgerald: Okay. Yeah. To be continued. All right. Thanks again.
Dr. Elisa Song: You’re welcome.
Dr. Kara Fitzgerald: And that wraps up another amazing conversation with a great mind in functional medicine. I am so glad that you could join me. None of this would be possible, through the years, without our generous, wonderful sponsors, including Integrative Therapeutics, Metagenics, and Biotics. These are companies that I trust, and I use with my patients, every single day. Visit them at IntegativePro.com , BioticsResearch.com , and Metagenics.com . Please tell them that I sent you and thank them for making New Frontiers in Functional Medicine possible.
And one more thing? Leave a review and a thumbs-up on iTunes or Soundcloud or wherever you’re hearing my voice. These kinds of comments will promote New Frontiers in Functional Medicine getting the word on functional medicine out there to greater community. And for that, I thank you.
A Story of Hope
I want to share my answered prayers with you, but more importantly, for you. I need to let you know that there is success out there and to tell you our path. Too often, we only hear of the struggles and acute health situations. The PANS/PANDAS successes fade off the radar screen because the parents of healthy kids don’t need the help anymore.
Of course, every story and every child are different, but here is our road to recovery. I hope it helps someone in some way:
Our 14 yo son was diagnosed with PANS 2+ years ago. You know the hell. Adolescent onset presents a bit differently than with younger kids. He didn’t have tics, food restrictions, and rages, but he had plenty of emotional lability, cognitive impairment, extreme fatigue, and some OCD. Dumb luck or God’s work placed us in the capable hands of a wonderful pediatrician who nailed the diagnosis within six months of onset, and we were prescribed an initial 3-week round of antibiotics. I was totally unfamiliar with PANS, so I thought our nightmare would end after the initial 21-day course. In our first 14 years, my son was NEVER sick, so my radar was off. His symptoms disappeared initially, so this PANS diagnosis faded out of my mind.
The antibiotics seemed to “fix” him, but the symptoms resurfaced about 8-weeks later and continued to worsen – quickly. I was slow to react, and my son deteriorated as a result of my ignorance. It was six months after the initial diagnosis before he was put back on antibiotics. I’ll never forgive myself for this unnecessary lapse, and for a year, we remained on Azithromycin along with 880 mg of Aleve daily. I hate that he was on a long-term course of antibiotics and all that Aleve, but I fearEd brain damage more (and PANS/PANDAS guru Dr. Susan Swedo agrees).
Simultaneously, we hooked up with my college roommate/functional medicine practitioner in North Carolina, who almost exclusively sees PANS/PANDAS, Lyme, and toxic mold/heavy metal patients. Again, this was either through dumb luck or God’s work because we hadn’t been in touch in 15 years. She met my son at a sporting event, I complained of his symptoms, and she immediately said, “He has PANS or PANDAS” and insisted we bring him to her office the following day. My exact response to her was, “Oh yeah, I think PANS is what the doctor diagnosed him with six months ago.”
She did some bloodwork and organic acid testing (OAT) and saw more than 26 deficiencies or markers that needed immediate attention. He was immunosuppressed and was malnourished with mitochondrial impairment. Through a regiment of supplements, vitamins, gluten-free diet, etc., we’ve been able to address each of these areas of concern. Our functional medical provider and pediatrician never spoke but were very aware of our dual approach and supported one another’s efforts.
We continued retesting with the functional medicine doctor every 6-8 weeks and tweaked the supplements, vitamins, and diet, and added herbs, but we never stopped the antibiotics. She could literally read his lab reports and tell us precisely how he had been doing with amazing accuracy before we shared any data with her. It is incredible to witness.
While he saw continued improvement, he was still sick though the flares became less frequent and less severe – but it was still bad enough that I continued seeking treatment.
Mostly out of desperation, I sought help from a Chinese Medicine Doctor. I have NO IDEA how Chinese medicine works, but I just thought it was worth trying acupuncture and whatever other treatments that might help. Interestingly, Dr. Lisa had no experience in PANS, but she also said that was irrelevant because, in Chinese medicine, you treat the presenting symptoms, not the Western diagnosis. But she cared enough to research PANS and even attended a PANS/PANDAS webinar.
She began acupuncture, cupping, and other Chinese therapies. We also then started CBD oil (a trusted brand) and different probiotics. At first, my son was reluctant to this approach due to “physician fatigue” …more appointments, more doctors, yuck. But, from the very first appointment, he started to feel a little better. Even after remission, he kept those weekly appointments For a while because they really make him feel strong, alive, and healthy.
So, where are we now? We 1+ year in remission! I truly feel that this nightmare is largely behind us. We still have minor flares, but they are less severe, less frequent, and shorter in duration. When he does flair, we work with our functional medicine provider to do our best to identify the trigger: stress, toxin (yeast overgrowth, mild, etc.), diet, bacterial, viral, etc. I’m confident that we’ve finally got this under control.
Next steps: We continue the gluten-free/organic diet (almost dairy-free), supplements, and vitamins indefinitely, but we weaned off the antibiotics, Naproxen, and CBD. Instead of the antibiotics, we are adopting an herbal mycoplasma protocol that our functional medicine provider has had GREAT success with…she uses antibiotics sparingly in her practice.
The road to recovery wasn’t smooth. We saw other physicians along the way who disagreed with the initial diagnosis, reported that his immune system was “normal,” conducted additional testing that indicated he was healthy – but they were all wrong. SO WRONG. At times, he was so desperate and so sick that I wanted to give up, and he wanted to give up.
I have guilt too. My biggest regret is that after the initial symptoms disappeared and our son came back to us, I ignored the symptoms for FAR TOO LONG when they reappeared. I don’t know why. He then got so, so sick to the point where he was completely nonfunctional.
My message to parents is to listen to your child and trust yourself. We all have strong parental instincts for a reason. I know there will be days when all you want to do is hide under the covers and shut the world out. But, perhaps there will be days when your child is healthy enough that you start to forget how bad it was.
It’s been a very challenging time, and I know some of you have been on this roller coaster for YEARS longer than us. But I wanted to share our rainbow in this storm. If you would like more information, please email Gabriella and she will forward your email to me.