My guest this week is 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 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.
In this episode, Dr. Song and I discuss how parents can recognize, assess and act on the common symptoms of the growing illness PANS/PANDAS. Dr. Song defines PANS/PANDAS and shares the common realities that families dealing with this illness face. She breaks down her 6-step treatment approach for the audience and provides incredible insight, tips, and resources for families. Children suffering from PANS/PANDAS experience brain inflammation commonly referred to as “brain fire” and resulting in neuropsychiatric symptoms. To learn more about Dr. Elisa Song click here.
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What is PANS/PANDAS?
- PANS, Pediatric Acute-onset Neuropsychiatric Syndrome
- An umbrella term for a set of conditions that causes an acute-onset of tics, OCD, behavioral issues, and cognitive processing problems
- There are infectious triggers for PANS and non-infectious triggers for PANS
- When the infectious trigger is strep we call it PANDAS
- There are various infections that implicate PANS, such as influenza, herpes 1, 2, and 6 (roseola virus), HFM virus, Epstein-barr (mono virus), and Lyme disease and its co-infections
- Non-infectious triggers such as environmental toxins, molds, heavy metals, and even metabolic disorders
- The underlying commonality between all of these is ‘autoimmune encephalitis’
- itis – means inflammation
- Encephalitis – means brain inflammation
- Anxiety, ticks, food restrictions or phobias around food, urinary frequency and urge with little urine production, motor problems (handwriting declining) and processing problems
- It is important to note that PANS/PANDAS is a clinical diagnosis
- However, there are clues to help assess and determine this diagnosis
- Testing their reaction and results to anti-inflammatory medication
- Using the anti-DNase B strep antibody marker and the Cunningham panel which looks at autoimmune antibodies
Dr. Song’s Treatment Approach
- For practitioners, refer to the PANDAS Physicians Network for consensus diagnostic criteria and treatment guidelines
- First step is to use health and medical history to be the guide in finding the underlying cause in what exactly needs to be treated
- Address that “brain fire” by treating the inflammation with natural methods before turning to and relying on long-term NSAIDs or using antibiotics
- Omega-3 fatty acids, curcumin or turmeric, eating clean whole foods and cutting out processed foods and sugars
- Working with an integrative functional medicine practitioner to help guide you through the proper steps to identify and treat underlying imbalances such as gut dysfunction, nutritional insufficiencies, food sensitivities, leaky gut, detoxification issues, methylation and mitochondrial problems
- Work with the schools to ensure they are equipped to meet the needs of the child
- Use homeopathy tools, essentials oils, acupuncture, acupressure, and cranial osteopathy
Where to learn more about Dr. Elisa Song…
Episode Intro … 00:00:30
What is PANS/PANDAS? … 00:03:15
Common Symptoms … 00:05:58
Increasing Prevalence of PANS … 00:09:18
Assessing PANS/PANDAS … 00:16:30
Dr. Song’s Treatment Approach … 00:22:06
Support For Siblings & Parents … 00:28:45
Episode Wrap Up … 00:32:49
Dr. Nicole Beurkens:
Hi everyone, welcome to the show. I am Dr. Nicole and today, we are going to talk about conditions that I’m seeing more and more in my clinical practice with kids. PANS and PANDAS. No, we’re not talking about the adorable fuzzy bears that you see at the zoo or the kinds of pans we use when cooking. PANS is actually an acronym that stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and PANDAS is a specific type of that, and that stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep Infections. Both are diagnoses that are applied to children whose mental health symptoms start very suddenly without any kind of obvious explanation, and this is something that my colleagues and I are seeing much more often and it’s definitely a topic that I want both parents and professionals to be more aware of.
Unfortunately, many medical providers and mental health providers aren’t yet looking at these kinds of issues for kids who present with these kinds of symptoms. So I want to give you some information that you can use to advocate and have a sense of what needs to happen for your kids. To help us understand these issues, I’ve invited my friend and colleague, Dr. Elisa Song on the show today, let me tell you a little bit about her.
She is an MD Holistic pediatrician, pediatric functional medicine expert and a mom. In her integrative pediatric practice, Whole Family Wellness, she has 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, online summits, and medical conferences.
She created Healthy Kids, Happy Kids 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. And I’ll just say that Dr. Song is the most knowledgeable pediatrician I know when it comes to PANS, PANDAS, integrative treatment for children, and it’s such an honor to have her here with us today, welcome to the show, Dr. Song!
Dr. Elisa Song:
Oh, thanks, Nicole. I had the honor of having you on my Thriving Child Summit, so I’m glad to be able to do the same for you, and this is such an important topic, so thanks for having me!
Dr. Nicole Beurkens:
Absolutely. So I kind of gave a brief explanation at the start about these conditions and what they are, but let’s just dive right in. Many parents who have kids with symptoms like anxiety, OCD, tics, behavior kinds of issues — they may have heard about PANS or PANDAS and wonder, is this something I need to worry about? What exactly is this? How common is it? Should this be on my radar? So let’s start there, what exactly are these conditions?
Dr. Elisa Song:
So you gave an overview and you’re right on, that PANDAS is a subset of PANS. So as you mentioned, PANS is your Pediatric Acute-onset Neuropsychiatric Syndrome. This is an umbrella term for a set of conditions that causes an acute-onset of OCD, tics, behavioral problems, cognitive processing problems. You could have infectious triggers for PANS and you can have non-infectious triggers for PANS because we’re trying to figure out what on earth is causing these symptoms.
So when there are infectious triggers and the infection is strep, that’s when we call it PANDAS, but there can be lots of other infections we know that are implicated in PANS, including influenza, herpes 1 and 2, many very common childhood infections like herpes 6, which is the roseola virus, Coxsackieviruses, which are the hand-foot-and-mouth viruses, Epstein-Barr, which is the Mono virus, even Lyme disease and its co-infections. So there are many different infections. Some practitioners are only aware of strep, they don’t look for other infections, and when the strep antibodies are negative, stop looking. But we need to keep looking. We also have non-infectious triggers.
We know a little bit less about how to identify those non-infectious triggers and how to treat them, but these can be things like environmental toxins and mold, heavy metals, even certain metabolic disorders. But the underlying commonality is that the path of physiology, what’s going on in the brain is that these conditions are what we call an autoimmune encephalitis. So -itis means inflammation and encephalitis means brain inflammation. So these are literally children whose brains are on fire, and their immune systems are attacking their brains and triggering these neuropsychiatric symptoms. Now, I mentioned that the diagnosis is typically made with an abrupt on-set. What I will say is that I and many other practitioners in the front lines who are treating kids with PANS and PANDAS don’t necessarily see that sudden and abrupt traumatic on-set. Those are much more dramatic, yes, and much more obvious and those are the ones that often, you will see in documentaries like ‘My Kid is Not Crazy’, or the ones that end up in the Stanford PANS clinic.
When we see this dramatic on-set though, you’ll typically see symptoms of OCD, I mentioned anxiety, definitely tics, there can be food restrictions, so phobias around eating or food, lots of physical symptoms. So you might see urinary frequency or all of a sudden, they’re wetting themselves or wetting the bed or feeling like they have to pee very frequently, even though there’s not a lot coming out. So that’s a very common symptom that I see. We’ll see motor problems. So one of the first signs will be handwriting, slowly declining. I’ll see examples of kids with handwriting before PANS and handwriting after, and there is a dramatic difference in how well they’re writing, the penmanship.
You might see what I call piano hands, where you hold out your fingers and the hands will start to wave and not be able to stay still. So you can see these physical symptoms, these cognitive symptoms, kids who are having trouble focusing and paying attention and literally not processing well, having a hard time understanding what you’re saying and PANS and PANDAS is what we call a waxing and waning condition, so it’s not steady. You’ll see kids with what seems like, all of a sudden they’re having trouble in school and trouble with their friends, you’re not quite sure what’s going on, and they may actually come out of it and go back to baseline, and then they have another flare of their symptoms, and sometimes they don’t come out of it and the flare just gets bigger and bigger and bigger.
So it’s something that we really, really want to be aware of because when you have a child who has PANS or PANDAS, they may be diagnosed with — and in fact, the vast majority of children who are diagnosed with PANS and PANDAS have had multiple psychiatric diagnoses beforehand. The most common is anxiety, OCD, ADHD, ODD — I mean you name it, that litany of acronyms and many, many have seen multiple doctors and it has taken years to get a diagnosis, so I don’t want children to suffer needlessly because those children, while they may need psychiatric medicines for some of the acute symptoms, that’s not going to fix the problem. What we need to do is fix the underlying inflammation and the underlying autoimmunity in order to really heal them.
Dr. Nicole Beurkens:
Absolutely, that’s such a great big-picture explanation, because I think what I tend to see at my clinic are kids who have been to see a lot of other people, and are still really symptomatic and they’ve done all of the more common psychological or psychiatric treatments, right? I mean the typical thing when you present to the pediatrician or whatever healthcare practitioner you’re going to and your child’s got anxiety or has developed obsessive thoughts and compulsive behaviors or just is having whatever these symptoms are, it’s like — oh, we’ll send you to a mental health professional, get some behavioral therapy or some cognitive therapy and a lot of times, you know — a psychiatric prescription is written.
But what you’re talking about is really getting to the root of things. And what I find is, if you’ve done a lot of things that have been recommended for your child and they’re not getting better, or they’re getting worse, or you’re seeing this waxing and waning despite what you’re doing, it’s time to start looking at what some of these underlying issues may be, and very often we do find either these infectious or non-infectious triggers. I’m curious if you know the stats around the prevalence of this. Obviously, PANDAS is a specific subset compared to PANS. What is the general consensus at this point? Because I know that it’s increasing quite significantly. What’s the general consensus on the prevalence?
Dr. Elisa Song:
You know, what’s interesting with that is really and truly, the more you look, the more you’ll see. I think we’re just at the tip of the iceberg of recognizing how many children are affected by this, and many parents that I see in the office whose children are diagnosed with PANS or PANDAS, they will themselves recall periods of their life when they were younger, where they had severe separation anxiety, wouldn’t leave the house or OCD symptoms and had to do things repetitively and it would last for maybe months at a time, or maybe sometimes just weeks at a time and get better. So those were likely, we think those PANS and PANDAS symptoms, even in adults — but we’re seeing this more commonly in children and really as a general, unfortunate rule, we’re seeing more autoimmunity and chronic disease in children.
So the numbers are not really clear in the US, this is several years ago was estimated at maybe 1 in 200 kids had PANS or PANDAS, but that number is much higher now. There are many, many more kids with PANS and PANDAS. We don’t want to blame everything on PANS and PANDAS, so one of the things that we do in the States and in the Western World, there is always the kind of ‘Latest Diagnosis of the Day’ that everyone’s jumping on. It used to be Candida and the it was Epstein-Barr, or Lyme and now it’s PANS or PANDAS. Not to say that it’s not necessarily the case, but we also want to make sure that we’re looking broadly and really trying to find all of the potential group causes.
The other problem with the diagnosis is that the diagnostic criteria now, look only at and identify only those kids who have had a neurotypical baseline and have that sudden, dramatic acute-onset. Well, I would challenge most parents, educators, clinicians out there to really, truly, show me a kid who is a 100% neurotypical at baseline. I mean nowadays, what do you see? In my children’s classrooms, they just graduated from second grade and third grade — so many kids have trouble sitting still in their bodies and in their seats and so many kids have texture issues and sensory issues and need movement breaks. Would you consider that child neurotypical? Not completely, right? I mean my own children who are, knock on wood, developing beautifully, they’ve had their moments where it would take 20 minutes to get out the door because their socks didn’t feel right, and their shoes weren’t tight enough. For me as a pediatrician, I try to think, well what’s going on there? And many of those sensory issues are related to zinc deficiency. So sometimes, just bumping up the zinc containing-containing foods, and giving a little zinc supplement and it does the trick. But that being said, we are missing many, many, many children who have a more subacute on-set.
So I would say for the parents listening: If you have a child where you just are looking back and thinking, “This kid is just not the same. There’s something different.” Maybe at first, you thought well, it’s because they started a new school, or because their baby sister was born, or because we got divorced. There’s always stress to blame things on. And then you’re thinking, well this is just a phase, they’re going through a behavioral phase, it’s going to get better — but then you look back months, years later and it’s not better.
In fact, it’s just getting worse and worse and worse. So if your child is having this progressive and worsening on-set of anxiety, separation anxiety, fears, OCD-type behaviors, cognitive processing difficulties, it’s worth looking into, it’s worth investigating because the treatment can make a profound difference, and I don’t mean just psychiatric medicines, I mean really looking at identifying all of those potential triggers, treating those and treating the whole body like you do, Nicole, in your clinic. It’s not just about therapy, it’s not just about medicine, it’s about a whole body-mind-spirit connection and how do we heal from the inside out using that integrative approach and that’s what we really need for our kids with PANS.
Dr. Nicole Beurkens:
Yeah, and I appreciate what you said about how the diagnostic criteria now — say that this child had to be completely, typically developing and then this was an acute change, which those are the easy cases to see, right? When a parent brings their child in to me and are like, “Look, we had no developmental concerns about our child. They were doing fine in school, had friends, able to separate and go do things, whatever — and all of a sudden, literally overnight, or over the course of a brief period of time are now having all of these extreme symptoms. That’s a more clear-cut case.
I also see what you’re talking about where there can be a lot of overlap and overlay of kids for example, diagnosed on the autism spectrum with ADHD, sensory issues, those kinds of things who are developing new, more acute on-set symptoms that are different for them, and it’s easy to go oh well, this child always had issues — it’s like no, this is a child who now has had a worsening of symptoms over time and typically, we expect that even kids with more severe neurodevelopmental issues, they will improve with things over time.
If you’re seeing as a parent that your child is doing worse or you’re having this waxing and waning of things, there absolutely can be an overlap between those types of conditions that your child may have already been diagnosed with and then having these kinds of PANS or PANDAS issues.
Dr. Elisa Song:
That’s right. That’s such an important point, because as we know, with kids with autism, with kids with Down syndrome, they are more at risk for immune dysfunction and even autoimmunity, and there are countless children with autism or Down’s, or as you mentioned, already with another diagnosis attached to them that have a decline in their symptoms that we really shouldn’t be witnessing. I’ve had many kids with autism — yes, they have speech delays and socio-emotional delays and maybe some cognitive processing delays. But when there’s a difference, when there’s a worsening, when all of a sudden, they were sitting in class, participating, doing well with their peers and then all of a sudden, they’re having more tantrums and rages. I need to think, well what’s going on there?
I have had kids, it is very possible for a child with autism to have PANS or PANDAS. It’s very possible for a child with Down’s to have PANS or PANDAS. So don’t let any provider say, oh it’s just because they have autism, that’s the natural progression, or oh, it’s just because they have Down’s, of course, they’re going to act a certain way. We don’t want to take one diagnosis and just use that as an excuse for all the symptoms that arise.
Dr. Nicole Beurkens:
Absolutely. So you talked about some of the more common symptoms or red flags to look for — things like the separation anxiety or just more anxiety in general, the OCD stuff, the tics are a big one, more meltdowns, behavior issues. What are some of the ways, if a parent is thinking — wow, this is kind of sounding like my child, what are some of the ways as an integrative pediatrician that you look at testing or just assessing or coming to a determination of this?
Dr. Elisa Song:
That’s a great question, and what I want to make sure parents know and practitioners who are listening know is that PANS, bottom line, remains a clinical diagnosis. There is not a single test that will tell you your child has PANS or PANDAS, which is so frustrating, because as practitioners, we want a diagnosis, as parents, we want a diagnosis. We want to fit kids into a box. I’m saying we, broadly, because I know Nicole, you and I don’t do that, but PANS is a clinical diagnosis, meaning there is not one best way to say whether or not your child has it. There are some clues, though.
One of the “tests” that I will do is actually more of a diagnostic test, where I will put a child on Ibuprofen, so it’s Advil or Motrin, which is an anti-inflammatory medication. It’s a non-steroidal anti-inflammatory drug. So not Tylenol, not acetaminophen, but using Ibuprofen, I’ll do a little test where I will put a child on Ibuprofen, 3 times a day for about 5-7 days and have the parents notice what is their behavior, cognition, mood like? If there is an improvement, that gives me a tip-off that inflammation is driving some of those behaviors and mood and cognitive processing difficulties and then I want to look a little further.
So for PANDAS, there are a couple of autoimmune antibody markers that will be used. The first one is the anti-DNase B strep antibodies. So the anti-DNase B strep antibody. It’s important to know that because as you are starting to practice and see more kids with PANS or PANDAS, or if you’re a parent asking, your practitioner may not be that familiar with PANDAS to order testing, there is another test called the anti-dsDNA antibody, that’s more commonly used, which is not the right marker, so you want to make sure you get the right one.
There is a panel called the Cunningham Panel, which is by a lab called Moleculera, which is not actually no longer being used by the Stanford PANS clinic to look into diagnosing PANDAS and PANS, but this panel looks at autoimmune antibodies — so antibodies that your immune system are making against various parts of your brain, including dopamine receptors and tubular and it looks at an enzyme that was found to be elevated in kids with PANDAS.
Now, why did Stanford stop using this? One of the arguments that I’ll hear about not using this panel is that they were finding that many children who weren’t diagnosed with PANS or PANDAS had elevated antibodies. So my point is then, why on earth are these antibodies elevated? And if these children have neuropsychiatric symptoms — even if they don’t fit that abrupt-onset diagnosis, could they possibly have a sub-acute PANS or PANDAS or could they possibly have this autoimmune reaction, even if it’s not PANS or PANDAS, call it whatever you like, I mean Nicole and I — we know the diagnosis is just a tool, but it’s not everything. So why not look at why are these kids making these autoimmune antibodies, and could we possibly treat those, find out the root cause, lower the inflammation burden on the body and help this child get better, rather than just saying, oh well — a lot of kids have these autoimmune markers, so we’re just going to ignore them.
Dr. Nicole Beurkens:
It’s not normal to be introducing antibodies against your own brain. That’s such an interesting place that we’ve gotten to, right? As chronic illness and these kinds of issues have just become so predominant in our culture in adults and children, we’re just sort of immune to it at this point, it’s like oh, well — all these kids have antibodies against their brain. Oh, okay. It’s like — No! That shouldn’t be normalized, right? We need to look at how that’s not a good thing, and we should look at that!
But I think we’re at the point, with the percentage of the child and adult population that has issues, we’ve just sort of become used to it, and we go — oh, everybody’s got these things. So, that’s really fascinating. I didn’t realize that about that panel. So we’ve got some sort of clinical markers that we can use, we’ve got some lab tests that we can use, obviously an integrative practitioner such as yourself is going to have a wide variety of tests at your disposal to run, I think it’s just important for parents to know that there are a lot of options out there from a lab-testing perspective, but also from the perspective of seeing a clinical, well-versed in these things who can look at the whole picture of your child and kind of put these pieces together to say, this is maybe what’s going on.
Dr. Elisa Song:
Dr. Nicole Beurkens:
So once we’ve kind of identified that okay, this child’s brain seems to be on fire, we’ve got this inflammation issue, whatever we decide to call it — PANS, PANDAS, none of the above, we’ve got this inflammation going on — I know you’ve got a really comprehensive 6-step approach that you take parents and kids through to really addressing this because one of the challenges that I see in my area at least, and working with families even around the country, practitioners who have heard of these conditions really have very limited tools in their tool chest for treating them. And if they have heard of them and they say this might be what’s going on, or we saw the strep antibodies come back high — they’ll just go to antibiotics as the tool to treat it, but that’s it. They don’t go beyond that then, and what you’re saying is we really need to take a root-level approach to looking at why is this happening and how can we support the child’s brain and body, not just to get rid of the acute symptoms, but to really make sure that this isn’t an ongoing issue for them, right?
Dr. Elisa Song:
Yeah, absolutely. So I say it’s 6 steps, but they’re not step-wise steps. You’re doing a lot of these at the same time. So it’s more really 6 different approaches that we really need to embody when we’re looking at a child with PANS or PANDAS and how to really heal them. Not just to put out fires, but to literally manage and treat the whole child in front of you. Now there is a good resource for practitioners who are starting out, called the PANDAS Physicians Network, and they have all the consensus diagnostic criteria and the treatment guidelines, and in fact, a couple of years ago, there was a journal of adolescent and child psychology edition, specifically for the 3-step approach that they take “conventionally” to treat PANS and PANDAS. But most of that is going to be out of the reach for most practitioners.
Antibiotics and killing the strep, that’s one thing, but then you have these immunomodulatory therapies like IVIG, or Plasmapheresis or Rituximab that really is not available to practitioners out in the world and also, they can have significant side effects. So the first step in treating PANS and PANDAS is first really identifying what on earth you’re treating. So it includes testing for — and this is where you don’t test everything under the sun, you really let history be your guide. Because if you remember that your child had a case of hand-foot-and-mouth, and it’s around that time that something changed, well I’m going to check hand-foot-and-mouth antibodies, right? If they get cold sores all the time, then I’m going to check Herpes 1 titers.
So let history be your guide, but you’re going to check for a variety of infections, I mentioned some of the infections. Strep, Lyme and co-infections, Herpes 6, Coxsackie, Herpes 1 and 2, Epstein-Barr, Mycoplasma. If you’ve had a water leak in your house and you have mold issues, check for urine mycotoxins. I may or may not run the Cunningham Panel, it’s quite expensive, but when I’m not sure if it’s PANS or PANDAS, and I want to see, are there autoimmune markers in the brain, then I’ll do that. So then you treat what’s appropriate, and that might be using antibiotic — pharmaceutical antibiotics, but I’ll really try to else use herbal antimicrobials as well, because they have broader support.
The second step is putting out the fire, reducing the inflammation and you do that with things like your NSAIDs, right? Your Ibuprofen, but those can wreak havoc on the gut and Nicole, you teach your clients, and as we know in functional medicine, the gut is the root of brain health. It needs to preserve the gut-brain connection. So it may not be the best thing to be on long-term NSAID medications. So using what’s in your toolkit, like your Omega-3 essential fatty acids, Curcumin or turmeric, getting in that rainbow of fruit and vegetables. It’s really, really important to eat in a way that doesn’t fuel the fire. We need to get rid of the junk in the diet, clean up the diet, get rid of the processed, artificial food, reduce the sugars.
Then we keep the fire down with immunomodulation, and as I said IVIG can be a game-changer, but out of reach for many, many practitioners and patients. So vitamin D can act as an immunomodulator. There is a variety of things you can use, one of my favorites as a supplement by Metagenics called SPM Active, Specialised Pro-resolving Mediators. But with this, you want to work with a knowledgeable integrative functional medicine practitioner. You don’t want to dabble on your own.
PANS and PANDAS is tricky to treat, it’s not a one size fits all treatment by any means. The next step is really using your integrative functional medicine toolkit to identify other core underlying imbalances like gut dysfunction, nutritional insufficiency, food sensitivities and leaky gut, methylation problems and mitochondrial problems, detoxification issues — I don’t mean to make it sound so scary and broad, but when you work with a functional medicine practitioner, they can help identify some of these imbalances that we can treat and manage and support so that the healing is much faster and easier, and I’m not going to say PANDAS is always an easy treatment, because it’s not.
Those are unfortunately the rare cases that I have that, it’s one treatment and you’re done and they do great and they stay in remission, but it’s a waxing and waning, many kids go back and forth between needing intensive treatment, then we kind of take a breather and then the next flare happens.
The next 2 steps are really working on restoring that mind-body-spirit connection, working with the schools, doing your cognitive behavioral therapy is very important, family therapy — don’t forget about the sibling who has lost their brother or sister to PANS or PANDAS, we need to work as a family and work as a community. Children with PANS or PANDAS are much more likely to be unintentionally homeschooled, as the school just can’t meet the child’s needs. So really, in the PANDAS Physician Network, there are letters as guides for physicians to write to the schools, explaining what this child needs to be able to remain successful in schools. And then, as an integrative holistic pediatrician, that’s the last step — I really look to my other modalities like homeopathy and essential oils and acupuncture and acupressure, cranial osteopathy to really get the whole body healing in a place that even functional medicine does not have all the tools for. So it’s a broad, 6-steps but they’re really simple steps to think about, and then you just need to have a practitioner to work with and maybe multiple practitioners to put the pieces together.
Dr. Nicole Beurkens:
Yeah, and it can sound overwhelming and feel overwhelming, breaking it down like that and thinking about — okay, these are the pieces that we need to be looking at to really get healing going from a foundational level up and I love that you addressed the bigger picture issues of supports that are needed for the healing process, like reducing the stress at school and providing support there, and the family support. Parents need a lot of support.
If you’re a parent who is listening who has gone through this, or many of you have kids with challenges in general, that’s often a lost component in all of this, is realizing the toll that this takes on the family as a whole, but on you as parents in particular, it’s really stressful and can feel very lonely and isolating trying to raise a child with these issues and navigate that. So for sure, seeking out support for yourselves as well, whatever that looks like, whether it’s various types of therapies or mindfulness trainings or community groups, support groups, there are lots of them that have come about online even, as more and more parents are trying to navigate this whole realm of PANS and PANDAS and wanting to connect and communicate with other parents going through this, so reach out and get plugged in and connected, because otherwise it really is an incredibly stressful and isolating journey, I think.
Dr. Elisa Song:
Absolutely, absolutely. The isolation and the judgment that parents can feel that when even well-meaning family members are looking to you, thinking that it’s your parenting. Thinking, why don’t you have control over your kid? Why are you letting them rage like that? It can be really so isolating and devastating for the family unit. So making sure that you get those supports for yourself, it’s really, really important. PANS is not a short-term illness. You need to be in it for the long haul and be there for your kids in the long haul, so self-care is really important, even if you feel like you don’t have time for it. It’s really important, really important.
You know — shut down your computer, stop those google searches, stop doing the research, get your sleep because then you’ll wake up with a fresher mind and be able to handle more easily the stress of managing one child who is having emotional tantrums and rages and can’t get out the door, and then another child who is clingy and just wants you to read a story to them, and getting all of your daily things done like making the breakfasting and planning the dinner and going to work or whatever it is. It’s stressful enough as a parent today. Add on top of that a child who is sick, so please as Dr. Nicole said, just make sure that you are taking care of yourself, it’s so, so critical.
Dr. Nicole Beurkens:
Yeah, and I think it’s important as you just said that this is a waxing and waning diagnosis. Even if there is a specific infectious trigger that can be identified, it’s not a one and done thing. It’s not like you just treat that and then it’s gone. Very often, there will be cycles of things and there will be as you’ve used the term flares, which is a common term that we use when talking about PANS and PANDAS, where a kid can even go along well for months or years, and then all of a sudden, something triggers it and they have a flare again. And so it is more of this marathon and being in it for really some of the steps that you’re talking about in your process of building from a foundational level, the supports for good health in general, because you need that to make it through the long haul here, to reduce the likelihood that you’re going to have flares and those kinds of things.
Dr. Elisa Song:
Dr. Nicole Beurkens:
Well, this has been incredibly helpful, you provided so much valuable information. I really appreciate that, I want to make sure that people know where they can find out more about you. You’ve got a tremendous number of resources available for people online, so where is the best place for people to find you on the web?
Dr. Elisa Song:
The best place for people to find me would be on my blog, so www.healthykidshappykids.com, and I post articles there and really just try to share all the information I can as a pediatrician and as a mom. Because I like to make it real for you, it’s all about being practical and being helpful and moving forward. I’m also very, very active on Facebook and also on Instagram. And so on Facebook, you can just look up ‘healthy kids happy kids’ and we have a very, very active Facebook group, The Thriving Child Community Facebook group, where we have like-minded parents from literally all over the world that come, and we’re there to support each other, respect each other, learn from each other and really help provide that support, even if you are in a community that doesn’t necessarily value an integrative, more holistic approach to your family’s wellbeing. And then on Instagram, I just post information, education and sometimes pictures of my kids.
Dr. Nicole Beurkens:
You’ve got great stuff available, and we’ll put all of the links to those things in the show notes so people can easily access those. Thank you so much, Elisa for being here today. This was wonderful, I appreciate your time.
Dr. Elisa Song:
Oh yeah, thanks for having me. This was great and I’m so honored to be here with you again.
Dr. Nicole Beurkens:
Thank you. Okay, everybody, that does it for this episode of The Better Behavior Show, we will see you back here next time.