34. Sudden Onset of OCD in Children: Is it PANS/PANDAS? with Dr. Roseann Capanna Hodge
I had the privilege of interviewing Dr. Roseann Capanna-Hodge, a Licensed Professional Counselor (LPC), Certified Integrative Medicine Mental Health Provider (CMHIMP), and a Board Certified Neurofeedback Provider (BCN). She is also the founder and director of The Global Institute of Children’s Mental Health and Dr. Roseann and Associates.
Dr. Rosean shares with us her knowledge and clinical experience in treating PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus).
- What should parents know about PANS/PANDAS? What are its signs and symptoms?
- How are PANS/PANDAS diagnosed? Is there a test for PANS/PANDAS?
- What is the treatment for PANS/PANDAS?
- PANS/PANDAS in the school setting
- Dr. Roseann’s book: It’s Gonna Be Ok
Links and resources:
Dr. Roseann Capanna Hodge
Book: It’s Gonna Be Ok
Transcript of Episode 34
Dr. Roseann: Wow, I’m so excited to be here, Carrie, and have this conversation.
Carrie: Can you tell us a little bit about yourself and your background?
Dr. Roseann: My name is Dr. Roseanne Alanna Hodge, and this is my 30th year in mental health in supporting kids, their families and adults using only proven holistic therapies like neurofeedback, biofeedback, and of course, psychotherapy.
Carrie: Awesome. What type of training does it take to become a certified integrative medicine, mental health provider? That’s a long title.
Dr. Roseann: Well, you know, here’s the deal. Since I literally have only been an integrative mental health provider my entire career, there was no certification. There was nothing years ago.
I started out with going to the basement in a library and looking at microfiche and doing my research that way. And then I bought literally hundreds of books about integrative care, everything from nutrition to exercise, supplements, genetics, and did a lot of that training. So when these certifications became available because if you’re a licensed mental health provider, depending on what state you’re in and in my state, Connecticut, my license allows me to do work as long as I’ve had training. And so I always try to do highest and best and get certification. So I have certification to be an integrative mental health provider. I also have the Amon certification. I’m also a certified neurofeedback provider. It really just means you’ve done extensive training in a certain area in order to guide your clients, your patients, whatever you call them to that area.
Carrie: Okay. And your specialty is working with children and adolescentsts
Dr. Roseann: Yeah. And families.
Carrie: Okay, awesome. So why did you want to come on the show today and talk with us about PANS or PANDAS?
Dr. Roseann: Yeah. So I am somebody who specializes in PANS and PANDAS, and it is something that is dramatically on the rise.
And what is it? Is that they’re separate disorders that have the same infectious or toxic trigger. And there’s also another one in there, autoimmune encephalopathy, but PANS and PANDAS is a sudden onset of a mental health issue because the body has a misdirected immune response starts attacking itself and has an inflammatory effect, which then can produce a wide variety of psychiatric, neurocognitive and physical issues. And autoimmune encephalopathy is the same, except it’s not a sudden onset and why I want to talk about it. Like I said, it’s on the rise and infectious disease triggers are a very common source of mental health problems in the time of COVID. You know, we’re all seeing people with long holler symptoms affecting their cognition, right? Whether they’re calling a brain fog or they’re having psychiatric problems, I’ve had more than one person with psychosis as a result of COVID but there’s more than that. Right? So we have depression. Yeah, right. And, and there’s, it’s a very, very common source of anxiety, depression, EDD like- symptoms.
And I want therapists and people out there in the world to know about it. And, you know, we specialize in OCD in our center because we specialize in PANS and PANDAS. And other than one or two people who have OCD that come to us, all have a primary diagnosis of pans and pandas. So people are just not making this connection in my mission.
I’m on a mission to change the way we view and treat children’s mental health. I mean, that really is my mission, but I want people to know about this because not only am I somebody who treats and started working with people with Lyme disease almost 24, Is it 25 years ago? Somewhere, a long time ago, Carrie
And then I of course get my own child who gets Lyme disease at 22 months and develops PANS, but It is a horrible journey for any person, a child or an adult that has, you know, PANS and PANDAS, Lyme disease, because what happens is the first people that they see medical people, miss it. Then they get slopped into mental health providers who then say, “Oh, this is a mental health problem”.
They don’t understand the physical components. And you asked about like I do integrative work. I mean, What does that mean? It means that I really am studying about mind and body. And I don’t want to get the spirit out of there, but I’m really working on mind and body connections. And we are not educated enough as therapists, but parents are not educated.
They’re not getting educated that their kid could have a mental health problem. That results from something that could be medically treated, not with an anti-anxiety or antipsychotic, but with anti-inflammatory antimicrobial drugs to address what’s causing that root cause of that mental health problem.
So it’s something that’s incredibly common. One in 200 kids, the research says have it. And even though it’s called pediatric acute onset neuropsychiatric syndrome, it can actually now be an adult-onset. So we’re no longer just making, you know, saying it has to occur.
Carrie: So kids who have PANS or PANDAS when they go to get mental health treatment and the parent brings them in, oftentimes I imagine they’ll be misdiagnosed as either having anxiety, OCD, ADHD. Is that right?
Dr. Roseann: Tic disorder, separation anxiety. Yeah, absolutely OCD. I know there’s a separate category in the DSM for oppositional defiant disorder. It’s not real. it’s a symptom of another issue, So, you know, whether things are your depression and OCD on that spectrum, you have internalizers and externalizers and odd kids, or externalizers. It’s really the behavioral manifestation.
People haven’t done their due diligence to figure out what it actually is that sourcing this anger and non-compliance. Sorry people that are listening. Parents, they’re refusals.
Carrie: Right. So how do people get diagnosed? How do they come to a place of a proper diagnosis? What does that testing process like?
Dr. Roseann: Yeah. So first I have to say whether it’s Lyme disease or PANS and PANDA, there is no single test of the diagnosis. And this is so critical because people will go down rabbit hole after rabbit hole, after rabbit hole, looking for an official diagnosis. And particularly if the source is a tick-borne illness and there are hundreds of types of tick-borne illness.
We really often only hear about Lyme. Sometimes we hear about Bartonella or BBCA. They have very, very much impact to your mental health and some of your more severe psychiatric conditions, including schizophrenia, bipolar and there’s research to substantiate some of the things that I’m talking about.
They have a high rate of tick-borne infection. So. No single test. Okay. Are there tests civil? Of course. But as I mentioned with Lyme disease, Some people say it’s the most genetically evolved bacteria on the planet. And because it’s been around since prehistoric times they’re finding it.
They definitely found it coming over with Columbus in 1492, but people are saying prehistoric times, And so this bacteria can hide inside of a cell. So that means standard testing may not pick it up. And then there’s a whole controversy about what tests people are using and not, but in pans and pandas, there is a panel called the Cunningham panel.
It does not mean if your child is negative on that, that they don’t have PANS and PANDAS. So you have to look at clinical symptoms. And do they meet criteria, PANS and PANDAS? You know, there’s going to be a sudden onset of a problem or a deep acceleration of a preexisting condition. I like to talk about this because people really don’t understand this.
So you could have ADD. And then it’s literally off the charts, right. Or a low level of anxiety and then sudden onset of OCD. And that can be a confounding variable because people like, well, my kid always like saying chest, you know, but then literally overnight. So, and sometimes it’s really easy to see Carrie because.
People will come to me and say, oh, my kid got, the case of somebody who came to me recently, he got COVID and within 10 days he is psychosis.
Carrie: Wow.
Dr. Roseann: So pretty easy to make that connection.
Carrie: Sure. That was really fast.
Dr. Roseann: Yeah, with physicians still wanted to send them to the psych hospital and I was like, what is going on? We got to treat it. So we got him to where he needed to go. I think it’s really important that people find a provider- PANS and PANDAS trained provider. And you can do that by going, there’s a great national organization called Aspire Care where you can go to epidemic answers and they have providers listed there.
Carrie: Okay. That’s awesome. I think that that’s really great. This is a sudden onset of psychiatric symptoms, but it’s based on a physical medical problem and part of the problem that we have sometimes is we don’t always know, is something mental health-related or is something medically related. And we talked about in one of our very early episodes on the show, kind of ruling out medical conditions for mental health disorders.
What are some things that parents might see if they think that their kid might be struggling with this? what are some signs or symptoms to look out for?
Dr. Roseann: Yeah. I want to say that if you’ve had chronic anxiety or chronic stress or long-term any type of physical or mental health problem, you’re going to have physical effects on your body.
Your body is not designed to run on empty. And when your nervous system is hyper stress-activated, you’re going to start getting nutrient depletion. You’re going to get physical problems. You may have hair loss, your thyroid might go down. So whether that’s the actual source or something that’s worsening it. Really taking a functional approach through lab work is really important. So what are signs of PANS and PANDAS? We can only connect the dots looking forward. I mean, looking back not looking forward. And so these are things that people see. So when it’s really sudden, and sometimes people will come to me.
I know when they write down a date that it started. I’ve got to consider PANS. And it wasn’t like, oh, the grandmother died, or you know, they got bullied. Whatever it was, it isn’t something traumatic that happened often when it’s really sudden overnight, and you will hear stories of this, then all of a sudden they woke up.
And this is very common OCD, very, very severe to the point where they’re doing obsessions in compulsive thinking and behaviors. So they cannot function at all. Right? So these behaviors and intrusive thoughts may be going on for hours on it. And it wasn’t present there before, or was present at a very mild level.
So the level of how it destroys your functionality is a big red flag. You also can have regressive behaviors, so you can have a loss of bladder functioning. Right? Frequent urination is one of the hallmark signs. And this can occur in adults too. It’s not just kids, a loss of handwriting or coordination is another one or a loss of academic skills, math and reading, being the two most common.
And then, you know, you’re going to, you’re going to look for things like. Vocal or motor tics, a real extreme level of anxiety. And, and, you know, I mean, as somebody, a professional who spent so much time with OCD and anxiety, these are conditions that are misunderstood. You know, most people think about OCD as only compulsive behaviors, hand-washing and whatnot.
It always starts off as intrusive thoughts, right? And often the nexuses worry it’s anxiety. And then it’s, what we call a maladaptive way of coping with anxiety. So some people are like I’m going to go and work out. I’m going to go pray. I’m going to go to my spin class with my bestie, and we’re going to socialize when I’m feeling anxious and you find these healthy ways to cope. But OCD gets in there and there’s this habituation and it can really ignite like a wildfire due to the negative reinforcement cycle in the brain. And what happens with neuro-transmitters reinforcing us, but what it looks like. And these kinds of things. If there’s sort of a wax and weaning, all of a sudden your kid might need reassurance a lot and they weren’t a kid that needed reassurance, separation anxiety can all of a sudden show up.
One of my dearest friends, her daughter was totally typical and got bitten by a tick and within 30 minutes became a different human being. She developed severe separation anxiety within 30 minutes, her mom is a psychologist. She had to quit her job, and unfortunately, she didn’t really respond to a lot of treatments.
So she wound up getting tick-borne illness and then strep on top of it. So PANDAS, it’s strep only, but PANS is any infection or toxic trigger. And most of these individuals have layers of infection. So they could have scars. Like, my max had nine co-infections from ticks, Scarlet fever, a bunch of other things, you know, it was a lot of work to clean him up.
So a variety of symptoms can result that are mental health-related and they can be quite extreme behavior can be frightening. Not to speak in a way that’s saucy or inappropriate. Because I’m a PANS’ mom, parents will come to me and say, I literally thought my kid had a demonic possession. They just flipped out, you know, just can be very, very extreme, whether it’s an internalizing where they’re scared or extreme rage externalizers and then, you know, psychosis can happen in this as well. And it can be really, really frightening. And the most recent research, early, 2021, which is in my book, it’s going to be okay. Is saying what I knew. That these kids have paradoxical reactions to psych meds.
No surprise, because the issue is inflammatory response, infection and toxins, and every psych med has a toxin load. There isn’t a psych med that doesn’t have a toxic component. And so you add that into a system that’s already flooded and overwhelmed by infections and toxins. It actually worsens things.
Carrie: They can’t tolerate the medication cause their system’s already on overload.
Dr. Roseann: Overload. And, yes, they’re anxious. But the source is not neuro-transmitter genetics. That’s what everybody wants us to believe. So this is surprising to people. When I talk about this, most people, I hope people are listening, and this is why I do this.
You know, why am I doing this? I want you to think about it, right? So if you’re a therapist, you’ve got somebody on your caseload. This is who they are, who they are. And if you’re a parent or a friend to somebody, you might be like, holy moly. That’s what happened to Becky’s kid. And you want to say, this is an episode that I want you to listen to because I learned a lot.
And that information can just really change the trajectory of not only that individual, but their entire family. I mean, this is a devastating thing we knew within like six months that my 22 month-old had Lyme disease. I already was integrative. I already am in the Northeast with the top experts in the world.
He’s 16 and I’m telling you it took 14 years. And I won’t even tell you how much money, because it is not attainable for most people, because a lot of my friends have lost their homes and marriages. It is extraordinary what we did to get him better. And that is the norm and it’s rabbit hole after rabbit hole, after rabbit hole.
And I didn’t have the same issues as other people, because most people are forced to go in network where they’re challenged you belittled. I mean, when you hear some of these stories of what happens to people, it’s frightening. I mean, I, when I talk about cases, I. Give information that hides and protects there’s identity.
I mashed them up. I like to say I’ve had people who were tied down in psych hospitals, even though their titers were showing that they had off the charts. I had one client who had the highest strep titer that the hospital has ever seen and they refused to treat her for strep.
Carrie: So tell us a little bit about what the treatment is usually like for PANS and PANDAS.
Dr. Roseann: So there’s a treatment triangle and it involves antimicrobials really getting at that infection and then anti-inflammatory treatment and then mental health. Because even though this isn’t a biochemical problem, this is very traumatic. There are mental health components, parents need a lot of support.
They may have had a totally typical kid who now is hijacking the family, you know, financially behaviourally everything, and they’re not equipped to deal with this. And so they need a lot of support for themselves on how to really kind of get through this and, you know, really set these loving limits with their child and support them through this.
It’s very, very challenging.
Carrie: Absolutely. Parents that have children with mental health issues or physical issues need a lot of support and a lot of help. And unfortunately, a lot of times are judged is just, well, you’re a bad parent because your kid’s acting out and that’s not the case.
Dr. Roseann: And sometimes kids are called bad. I did a summit and my friend, JJ Virgin was on and Bob Hope’s granddaughter, Miranda hope is on and myself and we all have the same story. All three of our kids were kicked out of preschool.
Carrie: Wow.
Dr. Roseann: Yeah. And my kid was called a feral animal, by the teacher. Now what human being would tell a mother, your kids, a feral animal.
And each of us had horror stories. Right? JJ Virgin’s son was left outside in Palm Springs in September, outside the room locked out because they said he was a bad boy.
Carrie: Wow.
Dr. Roseann: Yeah, so we have to change that, that’s not okay. And one in two children in America has a physical or mental health problem. That’s ten-year-old data. That study is being updated. I can’t even imagine what it’s like right now. So we have to be way more tolerant and accepting and loving.
Carrie: So tell us a little bit about your book, Dr. Roseanne, It’s Going to be Okay, which I love that title. So tell us what it’s about.
Dr. Roseann: Well, thank you. I love this title. So I tell every person that I work with, it’s going to be okay. And that’s the first thing that I tell them because they need to hear that because you feel alone, you feel scared, you don’t know who to trust, and you definitely don’t know what to do. And you know, people find me in all these different ways. It’s unbelievable. And I work with people in person and remote and all different ways.
So this book is going to be okay. I lay out the eight pillars, what I call hope and healing. And I show people how to reduce mental health symptoms using only proven holistic therapies. And it is all there. All science-backed ways are over 40 pages of research citations. So I want people to know this stuff that made it and heard about.
But I can feel comfortable that they’re safe. I can try these out and as overwhelmed as we feel as parents in general, but when you have a kid who struggles, you feel even more overwhelmed, I encourage parents to get this book. Start with one thing. And when we do one small action consistently, it can create a lot of change.
And so I’m really, really excited. This is truly the 30 years worth my work in one book. And I really want parents to know it’s going to be okay and show them how to do it.
Carrie: Awesome. Awesome. So towards the end of every podcast, I like to ask our guests to share a story of hope. So a time where you’ve received hope from God or another person.
Dr. Roseann: Yeah. Well, you know, when you ask me this question, it’s actually hard for me to answer because I feel very connected to God. And so when I struggle in that moment and being a special needs, mom, times two, I have learned. That I have to be in the moment and really try to appreciate the moment. And so I think that I’m most connected when I’m with my kids and I am actually having fun and trying to laugh, not trying to laugh, laughing, just being there.
And so I have the blessing of having a million moments like that every day, being present and connected and having a lot of love around you.
Carrie: Okay. Okay. Hey, so every day, moments of hope for you, with your family.
Dr. Roseann: Yeah, absolutely. And, and I’m so lucky that I’m able to bring hope to people because at a time when I feel that people have the lowest level of hope and trust I’ve ever seen in these 30 years, it’s a conversation that I’m starting wherever I go, which is why I start off by saying it’s going to be okay, because people need to hear that like they’re feeling overwhelmed and out of hope. And I just think taking the moment to be extra kind to anybody who’s in your presence just goes a long way. And I know it sounds really hokey, but people are so lonely and disconnected and scared very much so. And I think they were before the pandemic and the pandemic has really thrown some fuel on this fire.
Carrie: Yes, I would definitely agree with that for sure. Well, thank you so much for coming on the show and sharing your wisdom with us today.
Dr. Roseann: Thank you for having this conversation. And if you think that, you know, your child has PANS or PANDAS, find a provider. I say this wherever I am, nobody ever regrets getting help. The only regret is when they don’t.
Carrie: I knew a little bit about PANDAS from my previous work with children. However, I’ve found this interview to be very informative in terms of thinking about, we always have to look at the holistic picture of anyone’s health, whether that’s a child or adult, how are they impacted physically, mentally, emotionally, spiritually. And if you’re looking at things from a holistic lens, instead of only being treating one or the other, usually something ends up missing in that picture. Unfortunately just with the way our current medical system is often doctors and counselors and psychiatrists aren’t always communicating together in the best possible way.
So it’s important for parents to really be the best advocate for their children in providing the linkage between some of those areas.
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I wanted to announce to you all that our next free webinar for hope for anxiety and OCD is going to be sometime, probably in mid-September. I would love topic suggestions for this webinar.
What would you like to dive into a little bit deeper? What would you like to have questions answered on about? So there’ll be a very short, you know, 30 or 45 minutes of teaching for the webinar. And then I want to leave time at the end for questions. So if there’s something that you would like to see some helpful teaching on and be able to ask some questions, feel free to contact me through our website, www.hopeforanxietyandocd.com.Thank you so much for listening.
Hope for anxiety and OCD is a production of By The Well Counseling in Smyrna, Tennessee. Our original music is by Brandon Mangrum and audio editing is completed by Benjamin Bynam.
Until next time may you be comforted by God’s great love for you.
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