Brain Power with Dr. Eko

EP. 21 | Pediatric Autoimmune Neuropsychiatric Disorders: A Holistic Approach with Dr. Adame

Dr. Hokehe Eko Season 1 Episode 21

Unlock the mysteries of Pediatric Autoimmune Neuropsychiatric Disorders as we host the remarkable Dr. Adame, a pediatrician who advocates for a "Veggies Over Pills" approach to health. Our enlightening conversation traverses the challenging landscape of PANS and PANDAS, conditions that often confound both parents and healthcare professionals alike. Dr. Adame's insights into the immune system's missteps that lead to these disorders are not only informative but also pivotal in reshaping how we perceive and treat neuropsychiatric symptoms in children.

With Dr. Adame's guidance, we explore the vital role that primary care physicians occupy in the early detection and management of these autoimmune conditions. The episode is filled with personal accounts that underscore the importance of a comprehensive, integrative medical approach. We combine conventional medical therapies with nutritional and lifestyle strategies, helping to demystify the journey for families and practitioners. Emphasizing the significance of parental intuition, our discussion provides hope and practical advice to support the brain and immune system for those affected by PANS and PANDAS.

As our episode reaches its conclusion, Dr. Adame and I delve into an array of integrative treatment options that promise to ignite wellness and recovery. From dietary interventions to innovative therapies, we lay out a blueprint for restoring balance to both the brain and the body. This episode is not only a call to action but also a heartfelt invitation to embrace an approach that nurtures the entire family's health, empowering our listeners to become proactive participants in their children's well-being. Join us for this transformative journey towards understanding and compassion for those navigating pediatric autoimmune neurological disorders.

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Dr. Hokehe Eko:

Hello parents, welcome to another episode of Brain Power with Dr Eko. I have an amazing guest. I know I say that every week, but really I mean it. All my guests are amazing in my book. So I have the amazing Dr Adame here. She's a pediatrician, but not just a pediatrician, she's an integrated pediatrician, just like I am, and she focuses on treating the entire family through. I mean leading them to holistic health, and it's the entire family that counts. So, without further ado, welcome to the show, Dr. Adame.

Dr. Noemi Adame:

Oh well, I'm so excited to be here. I'm Dr Adame. I'm also known as the Veggies Over Pills.

Dr. Noemi Adame:

Doctor, that's our tagline the Veggies Over P pills doctor. I am a board certified pediatrician, but I'm also a Whole Foods, plant-based home cook and baker. I'm a writer, I'm a public speaker. I'm a holistic wellness expert. I own a small clinic called Culver Pediatric Center and it's a pediatric clinic that helps transform the mind, body, spirit, health of children by empowering and educating their families, communities and schools in holistic nutritional wellness. So in addition to my general pediatrics residency training, I've also completed additional education on nutritional wellness through the American College of Lifestyle Medicine and on the integrative management of ADHD and autism through the Andrew Weil Institute for Integrative Medicine. I write a regular column for our local newspaper called the Culver Citizen that's titled Get Healthy with Dr Adame. I host a monthly radio show called the Veggies Over Pills Radio Show with Dr Adame at a local radio station and I wrote a journal to help guide adults or parents in holistic wellness called the Metamorphosis Holistic Wellness Journal.

Dr. Hokehe Eko:

I holistic wellness called the metamorphosis holistic wellness journal I like that word metamorphosis, because isn't that what we're all trying to? Butterfly behind us, yeah yeah, chain into the best version of ourselves. Wow. So typically that whole bio means that she's extremely well educatededucated, and you should go see her.

Dr. Noemi Adame:

That's what all I'm saying.

Dr. Hokehe Eko:

Yeah, because she has great tools in her toolbox to help your entire family reach holistic wellness. So let's dive into what we're going to talk about today. We're going to talk about pans and pandas in children, and the very first question is what's pans and pandas? Because we need to break that down, of course. So that's all about it.

Dr. Noemi Adame:

And it's going to be interesting. So if a family has already done a deep dive into PANS and PANDAS, they will know so much more than anything I'm going to talk about here. But for someone who is unfamiliar with the term, pandas is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. That's what PANDAS is. It is an autoimmune encephalitis, which is a fancy way of saying that after a child has a strep infection, they develop antibodies or those soldiers to fight the strep. Then, the way I explained it to the families, you have these soldiers right, these antibodies in their blood and they're attacking the strep to fight it, just like it's supposed to do, just like the immune system is supposed to do. But then the immune system starts to misbehave and those antibodies turn on the brain, on the child's brain, and they start to attack the brain, specifically a part of the brain called the basal ganglia. And PANDAS is a subset of a larger umbrella term called pediatric autoimmune neuropsychiatric syndrome or PANS. So all PANDAS is PANS, but not all PANS is PANDAS.

Dr. Noemi Adame:

So the main difference is when the symptoms are due to strep. When the autoimmune encephalitis or the autoimmune psychiatric neuropsychiatric symptoms are due to strep, we call it PANDAS when it is due to anything else and triggers include COVID. I've had patients that COVID was the trigger. It could be EBV, it could be mycoplasma, it could be herpes, coxsackie, all these other viruses. If it's all these other things other than stress that caused the initial presentation, then we call it PANS and a lot of people use the term interchangeably. I usually, when I write about it, I use PANS and PANDAS to be inclusive of families.

Dr. Hokehe Eko:

Right, so important. I'm glad that you broke down the differences between them, and that's why we always say it's so important. If your child is having persistent sore throats, you want to make sure you're getting them chets, because untreated stress can lead to what she's talking about today, right.

Dr. Noemi Adame:

Right, exactly, exactly. And you know it's interesting because the symptoms I remember. When I was in medical school this is over 20 years ago we got one slide about pandas. I remember this was when PowerPoint was new and it was this blue slide. All the slides were blue back then, they weren't fancy and just the white lettering and it said you know, pandas, molecular mimicry, all these symptoms after a strep infection, and I thought it sounds fake. It sounds fake. But then when in the same lecture they discussed other types of molecular mimicry and autoimmune conditions due to strep-like rheumatic fever, life, iga, nephropathy, I didn't think, oh, that sounds fake.

Dr. Noemi Adame:

And so it really shows that, even as a medical student, you know, we just have that automatic bias against anything that is psychiatric and mental health. And I am, you know, and I say that transparently and with the shame that I felt about feeling that way because it and this is exactly why the traditional medical system has failed these families, because these families are, are ignored or are just not not given the treatment that they need onset in pre-puberty, before puberty, of changes in mood, including obsessive compulsive disorder, mood lability, anxiety, separation anxiety, very debilitating separation anxiety like these kids can't go to school, some procedural learning, changes like handwriting changes, changes in school performance, changes in school attendance. The other is tics, like a sudden and dramatic onset of vocal and motor tics, attention issues, sensory issues. Parents have sent me videos of their children that are encephalopathic, screaming and being aggressive. It is a very, very debilitating and distressing condition, especially because a lot of like my families will tell you and this is this is one of the criteria that it's sudden and immediate Like I have had family tell me on this day is when we were sitting on the couch watching TV when, all of a sudden, he started perseverating that you know, someone was going to come in the house and kill us and saying that they didn't want to sleep by themselves, they wanted to sleep with us because they did, or that they did not want to go to school.

Dr. Noemi Adame:

Like very sudden and dramatic. If I ask a family, have they always been this way? They say yeah, yeah. So then probably not pandas, right, that doesn't mean I can't help you, but it's not pandas. So we have to go another different route. Pandas, and PANS is usually very, very sudden presentation.

Dr. Hokehe Eko:

Right, and how soon after the infection like strep, untreated strep has it shown up? I mean, I know it's not set time, but what has the research shown.

Dr. Noemi Adame:

So it can happen like very, very quickly after the strep infection, like within a week. But I have had families that say within about six weeks after the strep infection. The other problem is a lot of times it's a little hard to pinpoint because I just had a family that joined that the rapid strep was always negative. It was always negative. But they present it with very similar with diagnostic criteria that was said okay, no, this is PANDAS. And then when we check the blood work, the ASO and the anti-DNHB are elevated, indicating at some point this child had strep, even though all their rapid streps were negative. In some of these families even the culture was negative.

Dr. Noemi Adame:

So it is very nuanced and that's why, you know, I always tell families PANDAS is a clinical diagnosis. It is not a laboratory diagnosis. But some of these labs, like the AS, which is an anti-DNA SV, which basically just show recent or past strep infection, they can give us a clue as to what the molecular or what the infectious trigger was. But yeah, it's anywhere from a week to several weeks. I've even had families where they get it. They have like their first presentation and it's not too bad, they can handle it, but then they get another infection with either strep or something else and like one family described it, and they fell off a cliff, and they fell off a cliff, just, and so it's not. It's every child is different and we have to treat each child individually. But yeah, that's a very long answer to your question that it can be anywhere from a week to several weeks.

Dr. Hokehe Eko:

No, I like long answers to the questions because it gets. You asked me the exact same thing. You asked me one question and I'm like no, no no, no, no.

Dr. Noemi Adame:

I'll answer 10 questions.

Dr. Hokehe Eko:

But then for anyone listening, that's where the wealth of information, life-changing information, because they're like holy wings. So then you know what to do and who to reach out to, and so thank you for that answer, for sure. And so parents are saying, okay, so maybe this sounds like my kid, so now what do I do?

Dr. Noemi Adame:

Right, so if the first thing to do I am a pediatrician, general pediatrician, primary care doctor at heart so the first thing that anyone should do if they suspect that their child has PANS or PANDAS is go to their pediatrician first or go to their family doctor, go to the primary care doctor that knows their child, knows, their family knows and they have a trusting relationship with and I say that with some sadness because we don't see that as much anymore because the corporate medical system and the insurances have gotten in between and eroded that relationship.

Dr. Noemi Adame:

But the closest thing that a family has to a regular physician, a primary care doctor, that's who they should go to, because that doctor's going to know wait a minute, this is not the same child that I saw at their last wellness six months ago or a year ago or even two months ago. So that's why it is so important to first make a connection with their primary care doctor and then that doctor can then say you know what? Hey, I am familiar with PANDAS, I'm familiar with the PANDAS Physicians Network treatment algorithm. Let's do treatment and take care of your child. And if that happens, great. If their doctor says okay, I remember, I know that we have to start antibiotics for PANDAS and we can do that, but then beyond that I'm just not that comfortable. Then I suggest for families to go to the pandasppn. org website and there is a physician directory so they can look within their state or within their zip code for a list of doctors that are PANDAS literate and PANDAS and PANS informed.

Dr. Hokehe Eko:

Okay, wonderful, and we'll have that in the show notes. That's really important.

Dr. Noemi Adame:

You know I don't know if you have physicians listening. My guess is I'm a physician and I listen to your podcast, so you probably do. And so physicians specifically speaking to primary care physicians, family doctors and pediatricians you can treat PANDAS. There is no secret. The treatment is no secret. There is literally a beautiful algorithm with articles backing the evidence and the pandaspositionnetworkcom website.

Dr. Noemi Adame:

No reason why pans and pandas should not be something that primary care doctors who take care of children take full ownership of this. Families are suffering. They do not have time to wait six months to see a neurologist. They do not have time, oh, to see a rheumatologist, for example, which is the other subspecialty that sometimes treats pandas here in Indiana. It's six months to a year and in the meantime, families are suffering, children are suffering. So this needs to be owned by primary care and I will say that if you do have a physician, that is like okay, but I need a little guidance. I'm happy to guide them through their first patient, because you know what? Someone guided me. Someone guided me through my first patient and it made a world of difference. And so there's this, dr Courtney West, I think she's out in Pennsylvania. I met her at a conference and she guided me through my first patient and I will pay it forward also.

Dr. Hokehe Eko:

Yes, thank you. So my fellow physicians who are listening to this, thank you. So my fellow physicians who are listening to this, reach out and ask for help. We all are learning. Dr Adame and I had no idea about integrative medicine until we went and got extra training, so there is no shame in not knowing. We're lifelong learners and so we're here to help you. If you need help, if you need pointers on where to go to learn how to take care of your patients holistically, we will be happy to point you in the right direction. And actually I'll just put some resources in the show notes so that anyone listening can go there and seek help. Yes and yes. It's so important, even when parents come and they ask for help, help that we don't just say, even if it's something you're not familiar with, let's say, okay, let me go search for stuff and then I will get back to you, than dismissing the the concern, because I remember our parents know those children more than anybody else.

Dr. Hokehe Eko:

so it's so important for us to be the first to be advocates for our patients. I know that's part of the issue is that we're rushing and we don't have that much time, but please, Right.

Dr. Noemi Adame:

No, I agree, and I do think you know, because I think if I was back in the world of corporate medicine, I do wonder did I encounter children with pandas? Yeah, but because I had 10 minutes with him, I said, okay, I'm going to send you to psych or I'm going to send you here and just funnel them further away, because and that does haunt me, that does haunt me Now that I have my own concierge direct primary care practice, I can spend the time I can spend. I can block two hours for a family for their initial visit, and that's after having met with a family for another hour just gathering information, so that when they do bring the child to the clinic, we're not spending an hour gathering information. I, you're right, you know so, we've already. So it just yes, there's this beautiful act to treat pandas, but beyond the algorithm, what families need is time, compassion and someone to listen to their story and their journey.

Dr. Noemi Adame:

That's the main thing that families affected by Pants and Pandas need.

Dr. Hokehe Eko:

Yes, because it definitely upends their world as they know it and, like you pointed out, it's sudden. So definitely we need lots of compassion and just holding their hand and walking them through it and letting them know there is hope. You know it's not hopeless. Your child can get better. We just need to get started on the right things to do for your child. I'm going to say something here If anyone is listening and knows a family that is struggling, please send this episode to them so that they can listen to it and reach out and figure out who can take care of them, reach out to their doctors and all of that, so that we're all. Let's pass this on as kindness. Let everybody share this episode and share some kindness today, because there are millions of families struggling and have no idea what to do.

Dr. Noemi Adame:

Right, Exactly, exactly, and they just need to find the right resources. There's several active Facebook pandas, parents groups and really parents are turning to, but they're not feeling heard by the traditional medical system or they already have a great pediatrician. I have several families, especially the ones that live further away. They're like you know, can you just be my PANDAS doctor? And I said, yeah, absolutely. Third type of family that joins our practice is they've already received the traditional, the algorithm treatment, but they want to see can I unmedicate my child? So they're looking for an integrative approach to see if it is possible to unmedicate and and go into remission without needing any more antibiotics or steroids and and and and. So we've had families that that. That's that's why they look into our practice and we're here regardless of where they are on their journey.

Dr. Hokehe Eko:

We are here to help yes, wonderful. So let's talk about the integrative approach to pandas.

Dr. Noemi Adame:

Yes, yes, so you know, like I said, I always tell families I am a Western trained, board certified, science-based physician, so I will follow the diagnostic and treatment algorithm from the Pandas Physician Network, but I also integrate what I have learned about integrative medicine on ADHD and autism, because there's a lot of overlap. It's all about protecting the brain, right? It's all about reducing inflammation and protecting the brain. About protecting the brain, right. It's all about reducing inflammation and protecting the brain. So I will also, for example, as part of my evaluation, screen for nutritional deficiencies like vitamin D, b12, folate, ferritin, iron, and treat those if vindicated. And yes, it's because I think that their child's neuropsychiatric symptoms are due to these vitamin deficiencies. But if these nutritional deficiencies are low, then first of all, it's going to worsen inflammation and it's going to affect cognitive health and their brain health. And, for example, iron Iron carries oxygen to the brain. If their ferritin or iron is low, then of course they're going to have worsening of their neuropsychiatric symptoms, because it's kind of like when we go at altitude, right, and we're all grumpy and you can't sleep because our brain isn't getting enough oxygen. So that's what happens when we have low ferritin and iron. So I screen and treat nutritional deficiencies. I also screen for other conditions that might be either causing and mimicking panda symptoms or exacerbating them lead toxicity, metabolic conditions, rheumatological, tick-borne illness and I look for potential infectious triggers. You know, like the ASO and the anti-DNA speed, which screen for strep, but also like an EBV panel or looking for other conditions. I tailor the laboratory work, the diagnostic evaluation and the treatment for the unique needs, the history, the response and the progress of each child.

Dr. Noemi Adame:

And one big thing is the key feature in pandas is inflammation. Right, that brain under attack, it is inflamed, it is an inflamed brain. So, yeah, I, I one little boy described this is he felt like his brain was on fire. So the first thing is to put out the fire with the algorithm, which is a non-steroidal anti-inflammatories like ibuprofen. Again, these are simple interventions antibiotics, steroids and then IVIG. And I do think IVIG is intravenous immunoglobulin G. It is a highly highly, highly highly purified blood product, this concentrated, and it is administered intravenously IV, you know, intravenously at an outpatient infusion center over two days. And I think that this is where a lot of the physicians get stuck and a little intimidated by IVIG and so a lot of them will start like a lot of times, by the time the patient comes to me, somebody has started them on antibiotics, but they come to me because they say I can't find anyone who's going to order the IVIG, which of course we do. So that's how we put out the fire. But then we need to protect the brain long-term and this is where the integrative management comes in.

Dr. Noemi Adame:

I guide families through feasible mind, body, spirit, holistic interventions that reduce inflammation, beginning with a high-protein, high-fiber, anti-inflammatory nourishment, lifestyle, physical activity, restorative sleep, mindfulness-based stress reduction, avoiding toxins, earthing like engaging with nature and touching the ground All of that helps to modulate a misbehaving immune system. Natural sunlight that is the best source of vitamin D, it is an anti. The sun has anti-inflammatory effects on our bodies. And then, of course, social connections, because that helps not just the child to re-socialize but also families. I do have my own little brain cocktail with supplements, including magnesium, for brain health, for sleep. A lot of these kids with pants and pandas have disordered sleep. So magnesium I'm a big fan of and that's part of my little cocktail, Vegan omega-3s Omega-3s are essential in brain function.

Dr. Noemi Adame:

And then vitamin D. I start everybody on vitamin D, regardless of whether they're low or deficient or not as an anti-inflammatory and as a brain protectant. If they are deficient, then I start them on a higher dose. If they have a normal vitamin D level, which honestly it is very rare to have here in the Midwest, I'm shocked if I find someone with a normal vitamin D level. I've never seen one, especially if I'm checking, like in the middle of winter. They're going to have a low vitamin D. But the dose will depend on what the level is.

Dr. Noemi Adame:

And I do not shame families about their nourishment it's such a personal thing. But I do encourage any degree of progression towards a high-protein, high-fiber, anti-inflammatory nourishment to reduce inflammation, to protect the brain long-term and, most importantly, to improve that gut-brain connection. And I think you've spoken about this before in your social media and in your podcast. And what we do is we offer tools to guide families with this intervention. We don't just tell families, oh, eat more vegetables. We really do provide very hands-on guidance for this and we understand that this is very it's a very personal thing, right? You know, it's a very personal thing. It's economical, it's cultural, it's lifestyle, it's just so many factors. And so we and we also do this once their child is ready.

Dr. Noemi Adame:

A lot of kids with PANDAS do have self-imposed eating restrictions, restrictive eating. So initially I've had families tell me I'm fighting for every calorie. Right now, you know I am fighting, all they're eating is, you know, chicken nuggets and mac and cheese. And I'm like you know what, when you're fighting for every calorie. When their brain is inflamed, when their brain is on fire, yes, yeah, just get food in there, that's fine. But then once they're ready and we go into remission and the encephalopathy and the inflammation it gets better, then we start hitting this more hardcore.

Dr. Hokehe Eko:

Yes, definitely there is a process to it, and we're not here to overwhelm you. We're here to walk beside you and know it is possible. Just step by step, by step by step, you get there. So that's what the parent, feeling overwhelmed with everything we say. That is hope and it's a step-by-step process.

Dr. Noemi Adame:

Right, absolutely, and so individualized, initially, with my PANS and PANDAS families. I meet with them every week, you know, every week. So, okay, they did IDIG last week. Okay, they did antibiotics, they started antibiotics last week, how's it going?

Dr. Noemi Adame:

And I do have some families who get discouraged because we'll do the entire algorithm, we'll do the brain cocktail, and they still feel like, okay, they've, in every intervention. Part of the intervention also includes surgical removal of the tonsils. So you know so, and most families, by the time they come to me, their child has already had their tonsils removed, like somebody has said okay, you know, because again everybody wants to reaper out, go to ENT and get your tonsils removed, right, you know, and it is part of the pandasphysiciannetworkorgcom algorithm. So, like, if we do all the medical interventions and they're still having some symptoms, you know, and again, each intervention will lead to improvement, but families want the child that they had before they got sick with PANS or PANDAS. So if we do all the algorithm and we do all these things and they're still having symptoms, then I will, with shared decision making, start to explore other options like that are brain protected, anti-inflammatory and immune modulating, such as low-dose naltrexone, and I use a compounding pharmacy for this. But yeah, I will explore and I'll prescribe this. I always recommend therapy and counseling with a PANDAS-informed therapist and, when indicated. Yes, I am veggies over pills, but there are times that we do need pharmaceuticals to reduce symptoms until the anti-inflammatory effects of the PANDAS-specific treatment and the holistic interventions take effect.

Dr. Hokehe Eko:

Yep, absolutely right. So yes, because yes, it's a balance, it's a combination of both. We're not ditching conventional medicine, we're saying there is a place for it, but there's also a big place for what can we do to decrease things naturally as well? So thank you for that. Yeah, very well thought out explanation of treatment integratively. So parents I'm sure parents are like, okay, okay, so where can we find Dr Adame?

Dr. Noemi Adame:

So we are a very, very digital practice. The best way to reach us is our website, wwwculverpediatricscom. We have a webpage on our main website specifically for PANS pandas. That explains our approach. I also host a group informational session on Mondays at 5 pm Eastern. So if a family's like, okay, I'm thinking of joining her practice, but I want to learn a little bit more about her, I want to learn a little bit more about her approach, then they can register for one of these group it's their virtual group sessions or you can call us, you can email us, you can book a one-on-one complimentary consult those book out a little further ahead.

Dr. Noemi Adame:

I'm also available for speaking engagements. All that is on our website. We're also active on social media. We have a Facebook and Instagram. Culver Peds is our handle and please, yes, contact us and I always tell families, especially from out of state, I will try and help find someone closer to you if we can. But if you just and we but, like I said, we have had some families from out of state that come to us we are more than happy to welcome you and and guide you, no matter how far away you come from, to see us.

Dr. Hokehe Eko:

Yay, wonderful, yes, that's great. So what's one last brain health tip you're going to leave for?

Dr. Noemi Adame:

parents. Okay, how about this one? A handful of spinach makes the inflammation go down.

Dr. Hokehe Eko:

Okay, I love it yeah.

Dr. Noemi Adame:

Yeah, and it just yeah. You know, I was in academics for a long time before I went into this world of private outpatient and I would love to one day do a study on PANS and PANDAS, the experimental group being Hope Woods, Plant-Based, and the control group, you know, just following the traditional algorithm. I really would, because most pandas physicians feel like that's the key is starting with. Nourishment is essential.

Dr. Hokehe Eko:

Yeah, no, that would be an interesting study. Call me when you're about to start. That would be a groundbreaking study. Yeah, that's wonderful. So, yes, we'll have all the information for Dr Adame in the show notes. Thank you again. I hope you learned from Dr Adame's beautiful presentation of PANS and PANDAS and how integratively we can help your entire family glow with health from the inside out, which is Glow Pediatrics motto, because we're here for the whole family, which is GoPediatricsMoto because we're here for the whole family. So, please share this again with someone in your world that you feel needs to hear this. And until next episode, have a wonderful day and remember you're the best parents for your children. Okay, have a wonderful day, thank you.