This episode of Conversations for Health features Dr. Nancy O’Hara, MD, author of Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis. Nancy is a board-certified pediatrician who specializes in treating PANS, PANDAS and BGE and other neurodevelopmental disorders. She is a leading trainer and mentor of clinicians in the US and globally, educating medical professionals to recognize, diagnose and treat these conditions and began her consultative, integrative practice for children with special needs, dedicating her practice to treating children with neurodevelopmental disorders, ADHD, PANS/PANDAS and BGE, OCD, Lyme, and Autism Spectrum Disorder in 1999.
In our conversation, Nancy highlights PANS and PANDAS, its symptoms, triggers, and treatment. She shares success stories, advancements in research and tactics for helping children and their parents better navigate these lesser known clinical diagnoses. With insights into dosing, treatment steps and advice for the health team that can help to restore health, this conversation is filled with hope for anyone who is looking for answers to all of their PANS/PANDAS journey questions.
I’m your host, Evelyne Lambrecht, thank you for designing a well world with us.
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[1:51] Nancy recalls her journey of working with children with autism, pediatrics, and functional medicine.
[4:40] Key differences, defining characteristics, and symptoms of PANS and PANDAS.
[9:22] Challenges of obtaining a correct diagnosis and the rates of occurrence in children.
[11:10] Best practices for achieving correct diagnoses including antibodies and specialty labs.
[16:05] Bartonella testing recommendations and key symptom indicators that encourage testing.
[17:19] A timeline of basal ganglia encephalitis and the silver lining role of Covid-19 in treating BGE.
[19:54] Genetic markers and other risks that increase susceptibility to autoimmune disease.
[21:13] First steps for treatment, including critical medicines, supplements and nutrition.
[24:31] Nancy’s recommendations for dosing supplements for children and the underlying deficiency causes of disordered eating.
[28:45] NAC dosing as it can be used for OCD and addictive behaviors.
[31:00] Tactics for helping kids and adults swallow capsules with greater ease.
[33:10] Identifying the triggers behind PANS/PANDA and next step supplement treatments.
[36:51] Reference ranges for vitamin A and D dosage levels for children.
[38:20] Antibiotics, restoration of the microbiome, and reducing toxic burden in the gut and nervous system.
[41:23] The role of immunotherapy in Nancy’s practice.
[45:17] The waxing and waning course of healing and the rates of recurrence.
[49:30] The team that Nancy employs to help regulate the nervous system.
[50:00] Nancy’s favorite recovery story.
[54:28] Nancy’s favorite supplements for herself and for children, her top health practices, and the hopeful changes she has experienced as she has learned to listen to her body.
Voiceover: Conversations for Health, dedicated to engaging discussions with industry experts, exploring evidence-based, cutting edge research and practical tips, our mission is to empower you with knowledge, debunk myths, and provide you with clinical insights. This podcast is provided as an educational resource for healthcare practitioners only. This podcast represents the views and opinions of the host and their guests, and does not represent the views or opinions of Designs for Health Inc. This podcast does not constitute medical advice. The statements contained in this podcast have not been evaluated by the Food and Drug Administration. Any products mentioned are not intended to diagnose, treat, cure, or prevent any disease. Now, let’s embark on a journey towards optimal wellbeing one conversation at a time. Here’s your host, Evelyne Lambrecht.
Evelyne: Welcome to Conversations for Health. I’m Evelyne Lambrecht, and I’m joined here today by Dr. Nancy O’Hara. Hi, Dr. O’Hara. Welcome to the show.
Dr. Nancy O’Hara: Thanks, Evelyne. Thanks for having me. It’s really a pleasure to be here.
Evelyne: So Dr. Nancy O’Hara, MD is the author of Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis. And this is an extensively referenced book, amazing resource for medical providers and for anyone really working with children, but also for parents. Dr. O’Hara is a board certified pediatrician who specializes in treating PANS/PANDAS and basal ganglia encephalitis, and other neurodevelopmental disorders. She’s a leading trainer and mentor of clinicians in the US and globally, educating medical professionals to recognize these conditions. And since 1999, she’s had a functional medicine practice for children with special needs. So Nancy, how did you develop an interest in this area and working with children? And then how did you get into functional medicine?
Dr. Nancy O’Hara: Yeah, so it was a storied background, but I started teaching children with autism right out of college. And truthfully, I was a lousy teacher, so I took the easier road and went to medical school. And I mean that wholeheartedly. And I went to medical school to work with children with autism as a psychiatrist, but I realized that I really wanted to get in on the grassroots, ground floor, so became a pediatrician, and was a partner in a practice, and had a lot of children with autism in my practice. And I had one little boy that got better with diet, markedly better. And she was somebody I knew. And at four and a half, he started talking for the first time when he removed gluten and casein from his diet. And she said to me, “You have to go meet the guy who treated him.” And I’m like, “Okay, this sounds like wackadoodle stuff, but…” And it was Dr. Sidney Baker. And I was going through infertility at the time. And I was so entrenched in the allopathic mindset, both of my parents are physicians, I couldn’t get my head around it for autism. But nothing in the western medicine world was working for me in getting pregnant, so I went to Dr. Baker as a patient, and it changed my life. And then I really began to look at functional medicine and the root causes of disease, and what each of us need to look at in our immune systems, our metabolic systems, our guts especially, and started doing this work… As I said, started my practice as my son was born, and that was in 1999. And then at age nine, he devolved suddenly into seizure-like ticks. And he is actually one of the subjects in my book. He just doesn’t want to be named. But he had a strep infection, got bit by a Lyme positive tick, and had a viral infection all in the same week.
Evelyne: Oh my gosh.
Dr. Nancy O’Hara: And thankfully, because of what I had learned and what I knew, I threw the kitchen sink at him, and he was better in three months. But that was what started my journey. That was now 15 years ago in PANS/PANDAS. And then this book came out of COVID, a desire to keep busy when everything was shut down, and my desire to teach. In my opinion, doctor, the German route is teacher. And I learned so much from my patients that I really want to help other doctors, not just MDs, DOs, NDs, nutritionists, chiropractors, everybody to be able to recognize and treat this disease because earlier treatment equals better outcomes.
Evelyne: Yeah. So let’s talk a little bit more about what PANS and PANDAS actually are. I hadn’t heard of them until probably six or seven years ago. And even now, I feel like they’re not commonly talked about. So what are they? What are the differences in what is actually happening in the body and the brain with these? And can you share some common symptoms of them?
Dr. Nancy O’Hara: Absolutely. So PANDAS was first coined by Dr. Sue Swedo in the 1990s, and it stands for pediatric autoimmune neuropsychiatric disorder associated with strep. So what happens with PANDAS is a child gets a strep infection, and the antibodies or the proteins in the body should attack the strep in the throat. But instead, in one in 200 children, those antibodies or immune system proteins instead intact the brain, specifically the basal ganglia. And there’s lots of mouse models, MRI support, and certainly hundreds of clinical studies that show exactly that the immune system antibodies are attacking the basal ganglia. And what happens when that happens is these children get an abrupt onset of OCD or intrusive thoughts. They can get an abrupt onset of a restrictive eating disorder, sort of an OCD eating, like they only want to eat white foods, or healthy foods, or foods of this texture. And then two of seven other symptoms. So they can be behavioral regression, like 11 year olds starting baby talk all of a sudden, anxiety, like separation anxiety from mom when they were previously going to school, sensory abnormalities, like a zero to 60 change, like their happy one minute and moody the next, ticks like my son had, or handwriting deterioration. It’s a great pathognomonic sign if a child all of a sudden, who was drawing beautifully or writing within the lines, starts writing very messily, neglects the left side of the paper if they’re right-handed. So check out their handwriting. That’s a very important sign. And then two somatic symptoms, urinary symptoms, like a child that was dry at night that all of a sudden starts bedwetting or has urinary frequency during the day, and sleep disturbances. 85% of the children will have what’s called REM disinhibition where they don’t get into deep REM sleep, but they become very restless sleepers. And they’re all over the bed or waking up several times at night. So those are the symptoms. Those are what PANDAS is. Now, PANDAS was very controversial. Sue presented about this in the early 2000s to the American Academy of Pediatrics. And her counterpart, who was supposed to refute the scientific evidence, instead just showed pictures of PANDAS. And so I know Sue well. We’re on several boards together. And I think if she had to do it over again, she might call it the Swedo disease. But she doesn’t have an ego, so hence the pandas. But in 2012, 30 clinicians, researchers and physicians got together to try to make it less controversial, and added PANDAS to all of the infectious triggers, mycoplasma, Lyme, viruses. I would add yeast and mold, and metabolic triggers, anesthesia, pesticides, any abrupt onset disorder and change the terminology to PANS. So PANS includes PANDAS, but has all these other triggers with it. And it stands for pediatric abrupt onset neuropsychiatric syndrome. Now, we are still waiting. The APP has said we’re going to come out with a statement about whether we think PANDAS exists or not, and trying to make it less controversial. This was supposed to come out before, and it still hasn’t come out. So why I had the subtitle basal ganglia encephalitis is if the AAP decides, in all of its wisdom, not to recognize this as a true disease, we will then move to just calling it what it is, which is encephalitis or inflammation of a part of the brain that’s called the basal ganglia that takes care of the things like anxiety, OCD, and ticks.
Evelyne: Thank you for sharing that and for clarifying that. So you mentioned in your book that more than 60% of your patients saw more than three other providers before being correctly diagnosed. Why is diagnosis so challenging? Is it because it’s not officially recognized by the American Academy of Pediatrics?
Dr. Nancy O’Hara: I think that’s one of the things. It is not yet recognized. I think also, that until people, especially physicians, busy pediatricians fully understand a disease and that this can happen, they don’t fully buy in. So once a physician sees it, I think they understand it, and then are looking for it. So part of getting the word out is helping more and more people to understand it and not just poo-poo it.
Evelyne: Yeah. And how common are these?
Dr. Nancy O’Hara: Yeah, it’s about one in 200 children. So with many diseases, autism, Lyme disease, when it becomes more chronic, there’s a genetic predisposition, and then the environmental trigger. We often call it genetic loads the gun, environment pulls the trigger. And so one in 200 children who get a strep infection, for example, will have an abrupt onset of neuropsychiatric symptoms like the ones I described. In our practice, it’s one in two, if not one in one, but we have a very skewed view.
Evelyne: Right. Right. Very interesting. And what’s so interesting to me is that many of the cases can be linked to the same infection, whether it’s strep or one of the other ones, with PANS, the more all encompassing, but no two children will present with the same symptoms. And that’s due to differences in the susceptibility, I take it, genetic susceptibility, and then responses to neuroinflammation. So that’s super interesting. Can we talk a little bit more about diagnosis? Because in your book, you explain how these conditions are clinical diagnoses, but there isn’t a specific diagnostic lab test. So can you talk about some of the antibodies. And also, do you use specialty labs for these, or are these widely available through LabCorp or Quest?
Dr. Nancy O’Hara: Yeah. So I think this is one of the other reasons that it’s so controversial. As compared to my parents’ generation, we, in my generation and younger generations, depend a lot on tests to diagnose something. The top 10 biomarkers for PANS and PANDAS are history and physical exam, particularly history. The mom or dad will come in and say they were fine on February 12th. And all of a sudden on February 15th, they were a different kid. They’ve never had OCD before. They’ve never had ticks. That abrupt onset should bring up this diagnosis in physician’s mind. But because there’s no good test for it, it doesn’t get thought of as much or confirmed as much. But if you have that history, it’s this no matter what the test results show. But if a child comes into my office with that history, I will get, from a regular lab, as you mentioned, Quest or LabCorp, or any local hospital, I will get strep antibodies. They’re called ASO, and anti-DNase B. I will get mycoplasma, because in our area, that’s the second most common. And I’ll get mycoplasma IgM and IgG. Those are acute and chronic immunoglobulins. Then, because of where we are in Connecticut, we also get usually Bartonella. A child with a constant rage or flare, or who has blanching stretch marks and lives in our area is very likely to have Bartonella, 42%. We’re just doing a study, 42% in our practice that have autoimmune or basal ganglia encephalitis have a positive Bartonella test.
Dr. Nancy O’Hara: Now, Bartonella needs to be a specialty test. So that’s one of the specialty labs that I do do for Bartonella, because it’s not as accurate from regular lab testing. But the most important lab tests to get are actually inflammatory markers. Again, from the regular lab, the most commonly positive is ANA, an anti-nuclear antibody. Now, 13% of healthy children will have a positive ANA. But in general, the large majority of children have normal ANAs. In this population, 60% will have a positive ANA with what’s called a negative reflex panel. So they do not have any evidence of other collagen vascular diseases, other lupus, MS, scleroderma, but they have a low positive non-specific ANA. And that, again, is very diagnostic for PANS or PANDAS. We also look at CRP sed rate, and then the specialty testing. One of the ones that a lot of practitioners talk about is from a company called Moleculera, or the CAM Kinase profile. This was developed by Madeline Cunningham, it’s also called the Cunningham Panel, for Sydenham’s chorea. Sydenham’s chorea was diagnosed many decades ago when children had rheumatic fever and developed choreic movements, which are the big and voluntary movements of their arms or their legs. And this was when the antibodies to strep with rheumatic fever attacked the brain with Sydenham’s chorea. So she developed this test for that. What we have found is that the children that have PANDAS, strep induced antibodies also have very high CAM Kinase titers. CAM Kinase is protein in the brain that gets elevated when there are strep antibodies present and subsequent inflammation. So that can be diagnostic, but it’s a very expensive test. So I only use it in atypical cases when I’m really not sure, and when a child is in a flare, because it may not be positive unless they’re having symptoms at the time. But I’m still a girl from West Virginia, walking around with my mouth open at the cost of everything, including me. And so I try to do things mainly by history, physical exam, and regular laboratory testing, and only doing those specialty tests as needed.
Evelyne: Yeah. I think that’s an important thing to keep in mind, especially because as I was reading your book, I just thought, oh my gosh, this is so much, right? And it’s such an overwhelming diagnosis. It’s overwhelming for the parents, for the child, for the whole family. And I do want to talk about that more. What’s the test that you use for Bartonella?
Dr. Nancy O’Hara: There can be two. One company is Galaxy, and they do very good Bartonella antibody testing. And the other gold standard is IGeneX, and they do what’s called a Bartonella immuno blot, which is about 20 times more sensitive than the usual western blot from a regular lab. Bartonella and other co-infections with Lyme often hide in deep tissues, are hard to find, so you really do need one of the specialty labs to find it. But again, if I have the history that they’re having a daily rage, that they’ve been bitten by a tick in our area, and they have blanching, which means the color changes when you press on it, stretch marks that don’t follow dermal lines. They’re either horizontal or vertical, not along the dermatomes that you usually see with other stretch marks, like with weight gain or adrenal stress. If they have those, I will treat as if and get the test later, or sometimes never if the parents really can’t afford it.
Evelyne: And I do want to get into treatment. But before I do, something you were saying made me think of something else I wanted to ask you. Do you feel like this has been around for a long time and was misdiagnosed, or are rates of basal ganglia encephalitis really increasing just like other neuropsychiatric disorders?
Dr. Nancy O’Hara: It’s a great question. And it’s certainly been around for many decades, but it is increasing, as you say, as many autoimmune disorders have. And I think that’s a combination of our disturbed or depleted microbiome. We don’t have the plethora of good germs in our individual ecosystems, so we’re getting more reactivity of our immune systems against self, that autoimmune disease. And we’re living inside more with less vitamin D exposure, less exposure to the dirt. And so that autoimmune disease, as Yehuda Shoenfeld always says, is one in two in the United States. The other thing is I wanted to mention, I’m always looking for silver linings of everything, and one of the silver linings of COVID is that COVID is another trigger for PANS and PANDAS. But when people, young people, for example, went to the hospital with an abrupt onset of psychosis, hallucinations, severe intrusive thoughts, they were tested during the time of COVID for COVID. And if they were positive, they got treated for COVID. When they were treated for COVID, their psychosis went away. So it allowed those physicians to see that there was an acute, post-acute infectious syndrome. So we can call it PAIS, or PANS, or whatever we want to call it. I just want physicians and other practitioners to see that after any kind of infection, there can be an abrupt on set of changes. And if we treat the infection, we can get those neuropsychiatric symptoms better.
Evelyne: Right. Since we’re talking about autoimmune diseases, I don’t remember the statistic. Was it 40% or 60% of children who get PANS or PANDAS have a parent or have a family member with autoimmune disease?
Dr. Nancy O’Hara: Yeah, 64% have a first-
Evelyne: 64%. Wow.
Dr. Nancy O’Hara: Yeah, have a first degree relative. And the most common are autoimmune thyroiditis, diabetes, inflammatory bowel disease, autoimmune arthritis. So, 64%. Yeah.
Evelyne: Wow. So aside from maybe that puts somebody at risk, but then you still have to contract an infection, but what are some other things that might put somebody at risk? Are there genetic markers that create susceptibility?
Dr. Nancy O’Hara: There are some genetic markers. HLAB alleles, as we see in other types of vasculitis or autoimmune disease, are often elevated in these children. Also, there are TH17 strep specific cells. T-cells are part of our immune system that fight infections, and it’s found that these children have abnormalities in that that causes more susceptibility to the autoimmune brain inflammation as opposed to any other inflammation. And then I think it also goes back to why is autoimmune disease increasing in general? And a lot of these kids, prior to this diagnosis, have underlying problems with gut dysbiosis, or underlying problems with allergies or eczema that make them more susceptible to inflammation and an autoimmune condition.
Evelyne: Let’s get into treatment now. So where do you start? And I know this is a very loaded question, because in your, well, your whole book, basically you cover the three steps, treating the symptoms, removing the source of inflammation or eradicating the pathogen, the infection, immunotherapy. So can we talk through these individually? And I want to focus specifically on supplements and nutrition, though you definitely use medications with your patients, so feel free to talk about that as well. And of course, those are critical, especially in the beginning. So go with that wherever you’d like. I know it’s a big question.
Dr. Nancy O’Hara: Absolutely. So I think one of the first things I look at is treating the symptom that is most problematic for the family. So if nobody in the house is sleeping, I will start with treating sleep. And there are many wonderful nutraceuticals for sleep. One of my favorites is melatonin, also very good as we’ve seen in lots of research for COVID. But it elevates serotonin, so it can be very calming in general, but it can be very helpful for sleep. There are some wonderful combination products like Designs for Health Insomnitol™ that I use quite regularly for sleep.
Evelyne: What’s the dose of melatonin that you use in children? Is it different?
Dr. Nancy O’Hara: Excellent question. I usually start with one milligram, but will often have to go up to six milligrams. And in a child that’s presenting around puberty, even up to nine to 12 milligrams. So with everything I introduce, I start low and build up slowly. So that may be every three days increasing if I’m not getting any effect that I want in the first couple of days. But I’ll start with one and move up.
Evelyne: And in your book, you also talked about with the melatonin, you’re not just using it for sleep but for its antioxidant properties as well, right?
Dr. Nancy O’Hara: Exactly. Yeah. And then I look at other symptoms. If there are symptoms, for example, are ticks. One of the best nutraceuticals for ticks is magnesium. And magnesium glycinate, magnesium threonate are both great magnesiums for ticks because they have much greater blood-brain barrier crossing the blood-brain barrier. If I have a child that’s also constipated, I may start with magnesium citrate, because then I’m killing two birds with one stone. In those children with OCD as their primary, I may start with 5HTP. Often, a 5HTP with B6 is very good. Now, I have to watch that they’re not coming to me already on SSRIs, because you don’t want to add 5HTP, which is a precursor of serotonin, when a child is already on SSRIs. But if they’re not and they have OCD, I may start with either 5HTP, or GABA. GABA is a lovely molecule that helps to decrease anxiety and obsessions and compulsions. It often works better with theanine, which helps it to cross the blood-brain barrier. So we’ll often use those two together.
Evelyne: Can I ask you a question about dosing?
Dr. Nancy O’Hara: Yeah.
Evelyne: Yeah. So we know that in… Well, supplements are designed for adult dosing, right? So do you use the Clark’s rule where you divide the weight and pounds by 150? And then do you use that, or do you go by age? Or how do you determine the dosing for supplements?
Dr. Nancy O’Hara: It’s a great question. And when I’m looking at herbals, antimicrobials for treating Lyme, or strep, or mycoplasma, I will absolutely start with Clark’s rule. So their weight in pounds times 150 divided by 30 to get the number of drops, for example. But when I’m talking about capsules, for example, magnesium, usually I will start with sprinkles. I will have the families open up the capsules and put them in something, and slowly build up to one capsule, for example, with magnesium. So I’m starting at a 50 milligram, for example, dosing, but I will easily get up to 250 milligrams with magnesium. With GABA, again, I think many of these… And 5HTP. With 5HTP, again, starting with 50 milligrams, I may well go up to 300 milligrams, which is close to an adult dosage. I know in some adults, we go up to 600 depending on the practitioner. But you can move up safely as long as you’re doing it together with a qualified practitioner who feels comfortable taking care of children, and as long as you’re doing it slowly. But that’s an excellent point about Clark’s rule.
Evelyne: And same with L-theanine.
Dr. Nancy O’Hara: Yes.
Evelyne: Okay. And then on Clark’s rule, you mentioned something about the dividing it by 30. I just want to clarify that point for liquids. It’s because there are 30 drops approximately in a milliliter.
Dr. Nancy O’Hara: Right. Right Exactly. And for an adult dose, for example, in a lot of products, it would be one milliliter
Dr. Nancy O’Hara: And then just going through the symptoms a little bit more, one of the symptoms a lot of our children have with this is brain fog, slow processing. And so adding things that are helpful for that, like Bacopa, which is a lovely herb for…
Evelyne: Love Bacopa.
Dr. Nancy O’Hara: Yeah. It really is wonderful for brain fog and processing issues. And there are wonderful combination products, like cognate from Designs for health that are wonderful in treating that particular symptom. If it’s restrictive eating, they really are restricting their food, I will often do a zinc tally test right there in the office. And that’s where I give them a little bit of zinc, and have them down it with a little bit of water. If they don’t taste it, they’re usually zinc deficient. And zinc deficiency increases your restrictive eating. So I will optimize their zinc levels. Often in little children, I’m starting at 15 milligrams, but many of these children, because zinc is needed for over 300 enzymatic and metabolic pathways that are disturbed in these kids, you often need to get up to 60 milligrams of zinc. Either picolinate or picolinate, or some of the combination products are all very good. So I’m looking at the symptom and treating that individually. Then we get to the next phase. Go ahead, you go.
Evelyne: Hold on. I have two questions. One side question, actually. And I think I’ve heard this before, but I probably just forgot. But you talk about the disordered eating in your book. With disordered eating in general, is just zinc deficiency one of the underlying potential causes?
Dr. Nancy O’Hara: Absolutely. If it’s not a cause, it’s a secondary effect. And in a way their eating is not going to get better unless their zinc levels are optimized. And prior to my career in functional medicine, I was on a board for children with eating disorders. So when I first started this practice, I had a lot of kids, not with PANS/PANDAS, or autism, but just with eating disorders. And universally, they were zinc deficient.
Evelyne: Super interesting. And then another question that I have, you didn’t mention the supplement, but you mentioned it quite a few times in your book, especially for OCD and ticks, which is N-acetyl cysteine, which is amazing. And I actually wasn’t aware of the research on NAC and trichotillomania until one of my friends wrote her capstone paper on that. And so I know there’s not a ton of research for all sorts of OCD or addictive behaviors, and you probably know more about it than I do, but what is the dosing that you use on that in kids? And can you talk more about the use of NAC for that in general?
Dr. Nancy O’Hara: Great reminder. N-acetyl cysteine is one of my favorites for OCD, and it has been shown in over 17 studies to decrease compulsive gambling, nail picking, and nail biting, as you mentioned, trichotillomania and OCD in general. The studies by Harden and others looked at 2,700 milligrams, and this was even in children. So I will start with one pill, which is usually 600 milligrams, 600 to 900, and slowly go up from there, all given at the same time, up to 24 to 2,800 milligrams per day. And I see marked improvements. Now, one other thing about NAC is it does oxidize when exposed to air. So there are some products that are in individually blister packed packages. The problem with many of those is the package is aluminum, which I think is problematic, and they have sweeteners that have been added, which I also think is problematic for a lot of these kids. So if you buy a bottle of NAC, for example, from Designs for Health or another company, take out each daily dose and put it in a little individual blister pack or a Ziploc bag, and then use that dose each day. If you keep opening the bottle every day, I’ve heard so many people they say, “oh, NAAC was amazing for the first two weeks and then it stopped working. Well, that’s probably because it oxidized, and you can avoid that by pulling out each day’s dose the one day you open the bottle.
Evelyne: Now, with children taking things in capsules, I imagine, depending on the age of the child, that can be difficult. If it oxidizes rapidly, it’s probably not something you want to open, plus the sulfur smell and tastes. But in general, with when you’re giving supplements and potentially medications, what do you do to get kids to take this?
Dr. Nancy O’Hara: So first of all, we work hard to help kids, even as young as two and three to swallow capsules, there are pill swallowing cups available on Amazon. There’s lots of tricks to that to get kids to swallow, but there are also lots of ways to get it in. So again, if you’re taking that individual daily dose of NAC, and you open it and give it to the child right away, I don’t worry about the oxidation. That’s quick enough. So what I’ll tell parents to do is don’t do a preferred food or a food that you really want them to eat. Don’t put it in your sweet potato puree that they’re loving because you want them to keep eating that. But if there’s whipped cream or ice cream that you want to give a tiny amount every day, you can take that capsule and mix it into a small amount, or maybe a little bit of non-dairy yogurt. The thing that I like the best is a smoothie. So I will make up a smoothie that tastes really good, maybe put a little avocado in, some frozen berries, a little bit of non-dairy milk alternative, maybe some protein powders that are great, lots of different things. And then I’ll pull out a shot glass full of the smoothie and put the capsules right in there. Stir it, have them down that first gulp of the smoothie with the supplements in there, and then have the rest of the smoothie after that.
Evelyne: Great, thank you. I think, even for some adults, that can be very helpful.
Dr. Nancy O’Hara: That’s the way I take mine. Just as an aside, I had one of those vitamin C Heimlich maneuvers on the edge of a counter on myself when I was alone, so now all my supplements I take in my smoothie.
Evelyne: Oh my gosh.
Dr. Nancy O’Hara: So I’m a wimp. I know what the kids are going through, I know what everything tastes like if any of my patients ask me.
Evelyne: Wow. So let’s go back to the treatment and talking and talk about either the… Once you’ve addressed the most important symptoms, what’s the next step?
Dr. Nancy O’Hara: Right. So then, it’s really looking at and trying to figure out what the trigger was. So if the trigger is strep or mycoplasma, or even Bartonella, I may well start with an antibiotic as azithromycin, especially if they’re coming to me with that abrupt onset early on. Now, many of the children, because I have a very long waiting list, have been seeing people, and come to me already on antibiotics, those children, or after the first three weeks to a month, I’m trying to get them on herbals. And there are many studies on the efficacy and safety of botanicals in treating all different types of infectious triggers. So for example, with strep, I may use silver, like a product silver silane. I may use oil of oregano that comes in a pill or in drops. The drops are very pungent, so that can be a little bit hard to do. I will often use berberine, which has very good studies behind it. In the treatment of strep, either by itself or in the formulation of golden seal. I often will use an herb neem, or usnea, taiga. Taiga is from a pine needle extract from the Siberian forest. I first learned about that in my travels to Australia. But it’s available again. It was out for four years. And it’s very good against strep. And when I use herbals, I will rotate those. So I’ll use one herbal for one to two weeks, then the next, and then the next. And I’ll do that for a couple of cycles. And then we’ll have the child seen again. And oftentimes, they’ll say, “Hey, he was great on the berberine and the silver, but he wasn’t as good on the golden seal.” And then I’ll just rotate berberine and silver, and rotate those a week on a week off like that. Mycoplasma, Houttuynia, isatis, those are herbals that follow Clark’s rules that can be very helpful. For Bartonella, also, Japanese knotweed can be very helpful. So there are a lot of herbals to choose from. And I go in these in very much detail, some in my book, but more detail in my membership on my website. And those are the main antimicrobials I use. I do want to mention antioxidants though, because for instance, with COVID, with viral induced triggers, antioxidants are very important, particularly vitamin A, especially if the level is low. And I will get vitamin A levels when they get that first regular blood work. Vitamin D, 80% of the children in our practice are vitamin D deficient. So vitamin D, especially with K2, is one we almost always add. It’s a wonderful antioxidant for viral infections. Vitamin C. And vitamin C is a water-soluble vitamin, so that one is just going to be peed out. You’ll have expensive urine if you’re taking too much, but otherwise, is very safe. Zinc lysine is another lovely antiviral amino acid. And then the monolaurate can be very good supplements for viruses, as can be the herbal olive leaf extract. So all of those are things I use in the viral category.
Evelyne: I have a question for you. For vitamin A and vitamin D, what are the levels that you want to see in children? I’m actually not familiar with reference ranges for children.
Dr. Nancy O’Hara: So the reference range on Quest, for example, is 30 to 100, and they say 30 is normal. We like the level to be 60 to 80.
Evelyne: Even in children?
Dr. Nancy O’Hara: Even in children, absolutely. Yeah. And often, we’ll be going 1,000, 2,000 and in older children, up to 5,000. By older, I mean around puberty and above. Vitamin A, it depends on the lab. In our Quest lab, it’s usually 28 to 55. And we’ll see a lot of kids in the low 20s. And in those, we’ll dose it daily. I feel very comfortable with up to 10,000 IUs, which is roughly 1500 RAEs. But there’s excellent research on high dose vitamin A in measles and other viral encephalitis. And vitamin A can be given under practitioner’s oversight in very high doses, up to 200,000 units once, and then a hundred thousand once a week later. And you can get a marked improvement in that way if your vitamin A is low. But it only is effective in kids when vitamin A is low, and only under a practitioner’s guise.
Evelyne: I have another question about the antibiotics and the antimicrobial herbs that you’re using. Are you kind of, especially with the antibiotics, wiping the microbiome? What are you doing afterward for restoration? And it brings up a question that I actually received from a practitioner in San Diego who’s wonderful, who… She’s an ND who treats PANS and PANDS, and she was wondering, why the increase? So much of the treatment is focused on dampening the fire and treating the infection. We do this over and over again for flares. But shouldn’t we be focusing more on the terrain so they’re less susceptible to relapse? And microbiome is one of those. And then I want to get into the others, like reducing toxic burden and regulating the nervous system. Can you touch on the microbiome aspect of that?
Dr. Nancy O’Hara: Absolutely. All of those are so critical. And I think one thing to say before I do that is we live in a toxic world. And having started my career with children with autism, we always called those children our canaries. In West Virginia, we sent the canaries into the coal mines. And if the canaries died, the mine was too toxic. And our kids with autism, and I think also many of our chronically ill children are our canaries, and they’re very susceptible to all of the toxic burden. So yes, I’ve often been called the diet doctor because I start from the very first in talking about how to have a healthier, whole food, unprocessed diet, and a diet that also includes some natural probiotics, some fermented foods, whether it be kimchi or kombucha, or just a little bit of sauerkraut or fermented cabbage. This is why though… Azithromycin is a tad different because I do not think azithromycin depletes the microbiome as much as, for example, amoxicillin clavulanate, which I try to avoid, or some of our heavier duty antibiotics like clindamycin, et cetera. But this is why I really try to move these children to herbals, because we don’t deplete the microbiome as much. We also have to increase the beneficial flora, so probiotics, prebiotics, fiber in the diet. It’s been proven in several different research papers that fiber has a synergetic relationship with the microbiome, and that we’re not getting enough good fiber in our diets, and that’s another reason why our beneficial microbiome is so depleted. So I talk about all of those things, and in little bits, trying to get them into the diet, and trying to make it as unprocessed as possible.
Evelyne: And with the microbiome and taking antibiotics, are you recommending that the child take probiotics two hours away or at different times of the day with everyone?
Dr. Nancy O’Hara: Yes, I always am. Yeah.
Evelyne: Okay. And I want to get into the immunotherapy aspect. I learned so much in your book about giving antibiotics. They give steroids. They also do IV immunoglobulins. And so it made me wonder, well, if we’re giving IV immunoglobulins, can you give something like the trademarked ImmunoLin, which is IgG? Do you use that in your practice with patients?
Dr. Nancy O’Hara: I do. And very early on, I decided not to do any of the big ticket items in my practice, meaning I don’t do IVIG in my practice, because I send them to an immunologist to do that. But if a child comes in without having steroids or IVIG from another practitioner, 80% of the children in our practice do not need IVIG. We can get them better with natural immune modulators. So I’ll start with just telling the parents, “Listen, 10 milligrams per kilogram of ibuprofen if your child’s in a flare. If they’re raging or anxious, or have severe OCD, give them 10 milligrams per kilogram of ibuprofen and see if it decreases the severity, the frequency, or the intensity of that episode.” And that proves to them, and to you, that it is inflammation that is partly at the root of this. And then absolutely, the IgG GI shield is a stalwart in our practice, and one that we use to try to build up naturally, the good immunoglobulins in their body, other products like quercetin, curcumin. And there are several products by Designs for Health. The curcumin avail in the little starburst like candies are very healthy, but a nice little way to get a little extra curcumin in and use as a reward after they take all their other supplements. But curcumin, quercetin, immunoglobulins, orally are all really… And the other one I wanted to mention is the specialized pro resolving mediators. We learned a lot about this in COVID, but those are phospholipids that help to help our bodies to withstand physical and immunologic challenges. So we have found that to be very helpful immunologically to these kids. So really, often after the first insult, what’s not being done enough is this type of immunomodulatory therapy. In allopathic or western medicine, it’s antibiotics, steroids, IVIG, as you had mentioned. And that’s about all they have in their armamentarium, besides SSRIs. In functional medicine, us as functional medicine MDs, or as naturopaths, chiropractors, any of that, we have an arsenal of nutraceuticals that we can use that can really help these kids decrease their inflammation, in addition to diet, probiotics, prebiotics, et cetera.
Evelyne: Yeah. And with the SPMs, the specialized pro resolving mediators, I’ve definitely heard great feedback from practitioners with using that with their patients for various conditions. In children, what dose do you start with? Is it kind of the same as an adult dose?
Dr. Nancy O’Hara: I really start with one pill. Yeah.
Dr. Nancy O’Hara: And this is a pill that is a gel cap, a little bit bigger for some kids to swallow, like other essential fatty acids are. So I often will tell parents to cut the pill and squeeze out the innards and put that in something. You’re not getting quite a full dose of one pill with that, but you really can’t overdose that in children, and that’s one way to get it in.
Evelyne: Okay, great. That’s a great tip. Something interesting that you mentioned in your book is kind of the waxing and waning course of healing, and also that there is a lot of recurrence. And so I remember at some point in your book, you said that sometimes we won’t know that somebody had strep because they were given antibiotics for it, whether they tested positive for it or not. But then two months later, they start getting the acute symptoms. But my question is if they were given the antibiotics when they initially had the strep, whether they knew it or not, why are they still getting PANDAS or PANS two months later?
Dr. Nancy O’Hara: The typical scenario is this. A child goes into their pediatrician, they have a sore throat, they’re really not acting well, but they also have an ear infection. And the pediatrician who’s used amoxicillin for that child five times, 10 times in the past, puts them on amoxicillin for their throat, as well as their ear infection, without checking. The most likely thing is that that child is no longer susceptible to the amoxicillin, and so they need a different antimicrobial to treat the subsequent PANDAS. So that’s what I see the most.
Dr. Nancy O’Hara: Usually, if they’re put on a different antibiotic, again, amoxicillin avionic is problematic, but if they’re put on cefdinir or a stronger antibiotic initially, often, they don’t then have symptoms that much later.
Dr. Nancy O’Hara: It’s usually when they’re put on an antibiotic that they’ve seen many times in the past that their body to some degree has developed resistance to. The other thing that I wanted to mention is what’s even more ubiquitous is viruses. And so they may also have a viral trigger at the same time they have a strep infection. So the antibiotic they were put on is treating the strep, but it’s actually the virus that’s causing that flare. And so those antioxidants I mentioned, the amino acid lysine, the botanicals, like olive leaf, those can be very important. And in fact, at each of our new visits, we give everybody what we call an acute viral protocol, so that when the next virus comes along, we might be able to dampen the recurrence of that waxing and waning effects. But that’s really why it happens. The other thing that causes it is teething. The cranial nerves are affected by changes in the mouth. So if you lose a tooth, if you get a palate expander put in, that can trigger irritation of the cranial nerves and trigger a recurrence of that neuroinflammation. So giving ibuprofen in those cases or anything that worked when the child was teething as a baby may be helpful.
Evelyne: So if I’m understanding you correctly, if somebody has never had PANDAS, but they get a strep infection for the first time, or any kind of viral infection, really, parents should have this kit on hand with antioxidants, with some of the T regulatory modulators like vitamin D, vitamin A to prevent that potentially?
Dr. Nancy O’Hara: Or at least to lessen the severity of the symptoms. Yeah, absolutely. And again, 200 kids get a strep infection, it’s only going to be one of them that devolves into PANDAS. But I think there are things that all of our children who live… Back to your point about our toxic world, we all live in this toxic world, so we should be decreasing the burden of the infections and the toxins in our environment in general for all of our children. So yes, the acute viral protocol could be great for everybody, as could be cleaning up your diet, cleaning up your home, doing more natural outdoor breathing, yogic activities with all of our kids.
Evelyne: Yeah. And going back to that question that I received about the nervous system regulation, I know it’s something we’re talking about more and more, is that something that you also work on with the children in your practice?
Dr. Nancy O’Hara: A lot. A lot. Yes, definitely. And it takes a village. And I can’t do all of it, so I have a dietician that I work with. I have therapists that I work with. I give them resources for how to start to bring better health into their children’s lives.
Evelyne: Yeah. And you have some great stories in the back of your book, basically case studies. I just want to ask you, what’s been your favorite recovery story, your favorite patient story?
Dr. Nancy O’Hara: I present and go through so many of them, but I think there was a little girl who called her symptoms bubble farts. And she was feeling a lot of gas and feeling actually twitching in her butt. And that’s where her tick was. Her butt would actually tick, and she would get very upset. And the parents… It came out of the blue. The parents couldn’t figure it out. And it had happened six weeks after a COVID infection. And the sibling had had Lyme disease, so they went down the Lyme disease route, went through all of these things. Nothing was working. She was on heavy duty SSRIs. They wanted to admit her to a psych hospital, because then, from those bubble farts, she went to having intrusive thoughts. She actually called her intrusive thoughts another name for herself, cheeky. And she came to our office with all of these symptoms. And literally, we put her on vitamin A, vitamin D, lysine, olive leaf extract, and a specific biofilm busting form of monolaurin, and she was better within two weeks. And she came in, and she was the cutest kid, and she just stood up, and she turned around and showed us her butt. And she said, “See, no more bubble farts.” And she said, “And cheeky is all gone too.” Now, the next time she got a virus three months later, because she had seen this and she started to get a little bit of the intrusive thoughts, she said, “Mom, cheeky is back.” She didn’t have any congestion, she didn’t have any other symptoms, but her sibling had a virus, and she had come out with these symptoms. Anyway, her mom started the acute viral protocol again, nipped it in the bud, and she’s been doing great.
Evelyne: That’s amazing. Thank you for sharing. I have some personal questions for you. But before that, I was wondering if there’s anything else we didn’t cover that you really wanted to share that’s important for practitioners?
Dr. Nancy O’Hara: I think the first thing is there is hope, and to not blame the child, and be partnered with the family, because these families… I always say our greatest instrument is a tissue box in our office, because it really is… These families feel so lost. They had a neurotypical child one day. And the next day, they’re in heck, and they need help. So they need our understanding. And what Sid taught me is, if you listen, they will come. And I’ve learned more from the patient. So listen to their stories, and don’t poo-poo anything. You’ll find new symptoms every day, like what bubble farts are or whatever, just by listening. So I think that’s really important.
Evelyne: Yeah, thank you for sharing. And I also wanted to point out. You shared a great resource for clinicians from the PANDAS Physicians Network, which is the PANS/PANDS diagnosis flow chart, which you mentioned in your book, if that’s useful to you listening. And on your website, drogara.com, that’s drohara.com, you have an integrative treatment flow chart that practitioners can download. And then of course, your amazing book, which is such a wonderful resource.
Dr. Nancy O’Hara: And really, the membership is… I couldn’t list all the dosing as we’ve talked about today. If people need more specific dosing, that’s what’s in my membership. I have 30 two to four minute videos, six lectures, all part of that, plus that flow chart you mentioned. And this month, we’re starting monthly teachings on different subjects. People have asked me to talk about, whether it be mitochondrial dysfunction, which can be secondary, Bartonella, Babesia, even constipation. Constipation is July because people are having trouble getting their kids. So it’s all there.
Evelyne: Yeah. I think it’s just wonderful that you’re actually sharing all your knowledge with the world, that you wrote this book, and that you have this membership for practitioners who want to learn more. So some questions that we like to ask every guest on Conversations for Health are, first, what’s your favorite supplement? Or it could be a few, but what are things that you can’t live without?
Dr. Nancy O’Hara: When I’m sick, I can’t live without NAC and vitamin C. When I’m at my office, I may give it to myself in an IV form. But otherwise, I’m always traveling with it. On a daily basis, because I have an MTHFR defect, methylfolate is really important for me, as is vitamin D. Because I have Celiac and I’m very sensitive to dairy, I need extra vitamin D. And then finally, I have a little bit of arthritis. So as a Designs for Health product, I use Arthroben® every day, and Quercetin. So those are my go-tos for me. I think if I had to say for a kid, OCD NAC. In general, curcumin is great for anxiety, as well as inflammation. And then the rotation of antimicrobials, if needed.
Evelyne: Great. And then what are your top health practices for your personal health and wellbeing? And I imagine, especially as a pediatrician working with very complex cases, that you must take care of yourself.
Dr. Nancy O’Hara: Absolutely. Well, I am fortunate enough to live on the sound in Connecticut, or one back, so I walk the beach every day, and that’s what grounds me. That’s what gets me started on my day. I also either do a few minutes of yoga, usually sun salutations, or sometimes if I really have to get some aggression out, boxing.
Dr. Nancy O’Hara: And then the other thing that I think has been very helpful to my adrenal stress is the Wim Hof methods of hot and cold. So I also have a portable sauna, and will do ice baths or ice cold showers. And I think that’s a lovely way for all of us to reset or rewire every day.
Evelyne: Awesome. Good for you. I cannot get on board with the cold baths, with ice baths. I’ve done it before, but-
Dr. Nancy O’Hara: I know. I just got started in the past couple of weeks, and it’s really been a game changer for me. My son, who has been my greatest teacher and is now an adult, has been doing it for quite some time. And it was a challenge to me that he challenged me with to start it, but it has been… I can only last a couple of minutes, but it’s been really helpful.
Evelyne: I love that. And then the final question is, what is something that you’ve changed your mind about through all of your years of practice, or could even be something recent, something that you used to believe that you don’t believe anymore?
Dr. Nancy O’Hara: I think the biggest switch for me was believing in my body and helping parents and children to listen to their bodies. Before I met Sid, I was constipated full of yeast, stressed out to the max, and just thought, well, I’m a physician. That’s the way it’s going to be. And once I started listening to my body and understanding how these things were affecting me, I was better able to listen to others when they were saying the same thing to me, or different things about how their body was feeling. And so don’t over worry about the twitches and ticks and feelings in your gut, but do listen to them and use them as guides as to what helps you to feel best. So I think that’s it.
Evelyne: That’s great. Nancy, thank you so much. This has been a wonderful learning experience just on the podcast today, but also reading your book. And I’m just so grateful for everything that you’re doing in this field, so thank you.
Dr. Nancy O’Hara: Well, thank you, Evelyne. And I really appreciate being on, and thanks for all your great questions.
Evelyne: Thank you. Thank you for tuning into Conversations for Health. Check out the show notes for any resources that were shared on today’s episode. And please share this podcast with your colleagues. Follow, rate, or leave review wherever you listen. And thank you for designing a well world with us.
Voiceover: This is Conversations for Health with Evelyne Lambrecht, dedicated to engaging discussions with industry experts, exploring evidence-based, cutting edge research, and practical tips.
Dr. Elana Roumell is a pediatric naturopathic doctor and mom of 3 with a mission to teach moms how to safely be a Doctor Mom. She teaches parents how to transform their fear, panic and overwhelm when their child is sick into feeling calm, competent, and confident to prevent illness and treat sickness wisely.
Dr. Brandy Zachary is a powerful and unique functional medicine teacher and award-winning practice owner. She has taken functional practices from zero to $1.8 million in mere months and has worked with thousands of health entrepreneurs on their branding, marketing, sales, speaking, clinical and practice strategies. Dr. Z helps practitioners grow 6 and 7 figure business and is passionate about the business of health and rapid practice growth.
Dr. Chris D’Adamo is an epidemiologist with expertise in the synergistic effects of healthy lifestyle, environmental exposures, and genetics on human health and wellness. He received his PhD in epidemiology, is the Director for the Center for Integrative Medicine at the University of Maryland School of Medicine and is on the Scientific Advisory Board at Designs for Health.
Dr. Tom O’Bryan is an internationally recognized and sought-after speaker specializing in wheat, its impact on health, and the development of autoimmune diseases as they occur inside and outside the gut. Dr. Tom is the author of You Can Fix Your Brain and The Autoimmune Fix, the creator of the documentary series “Betrayal: The Autoimmune Solution They’re Not Telling You” and he holds teaching positions with the Institute of Functional Medicine and the National University of Health Sciences.
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