In this episode of the Functional Medicine Research podcast, I interview Dr. Scott Antoine in a discussion about overcoming PANDAS. Dr. Antoine shares a personal story about PANDAS and his daughter which sparked a deep interest in this disorder that is misunderstood by conventional medicine. We discuss PANDAS, PANS, IVIG, OCD, and Dr. Antoine's Fully Functional practice model. You'll also learn how to find a practitioner who is well-versed in PANDAS and the associated disorders discussed in this interview.
Below is a full transcript on Overcoming PANDAS with Dr. Scott Antoine
Dr. Hedberg: Well, welcome everyone to "Functional Medicine Research". I'm Dr. Hedberg and I'm really looking forward to my conversation today with Dr. Scott Antoine. We're gonna be talking about PANDAS today. And Dr. Antoine is an osteopathic physician and after medical school, he completed an emergency medicine residency and emergency medical services fellowship at Albert Einstein Medical Center in Philadelphia. He also has completed a fellowship in metabolic, nutritional and functional medicine through the Metabolic Medical Institute. And he was 1 of only 121 physicians nationwide to achieve board certification in integrative medicine through the newly formed American Board of Integrative Medicine. And he also holds a certification in functional medicine through the Institute for Functional Medicine.
He and his wife currently run a busy functional and integrative medicine practice in Carmel, Indiana where they focus on helping patients who are hopeless and overwhelmed, find the root causes of illness and recover their lives and vitality.
Dr. Antoine, welcome to the show.
Dr. Antoine: Thank you very much. I'm glad to be here.
Dr. Hedberg: Great. So this is a topic I haven't covered previously and you have a particular interest in also not just PANDAS but also mycotoxin illnesses and mold exposure and you have a personal story about that with your daughter who had developed PANDAS in 2013. And it sounds like that's what kind of propelled you into functional medicine. Do you wanna talk a little bit more about that background?
Dr. Antoine: Sure. That's certainly true. So I have a daughter. Her name is Emma. She's 18 now. But five or six years ago, she came to my wife and I one day and said, "I don't think God is happy with me. I think I'm a bad person." And she was having some intrusive thoughts. Shortly thereafter she developed some compulsive handwashing. She had issues with terrible insomnia and bladder control. And we weren't really sure what was going on. At the time, we were both physicians. My wife and I had been physicians for years and so we hit the books to try and figure this out. And one night at about 10 p.m. my wife Ellen came to me and she said, "I think I know what's wrong with Emma. I think she has PANDAS."
I wasn't really sure what that was but I hit the books and said, "Sure enough. That sounds exactly like what she's got going on." PANDAS is pediatric autoimmune neuropsychiatric disorder associated with strep infection. So these kids get a run of the mill infection, maybe a sore throat or a cold, something that involves the strep bacteria, and the antibodies they make to fight it which is what your body's supposed to do, cross the blood-brain barrier and then cause inflammation in the brain and produce all of these characteristic symptoms. These kids become very defiant. They can develop facial tics which my daughter had as well.
So once we figured that out, I figured now we have a direction to go in. So I called the infectious disease...head of infectious disease at our local children's hospital and he got on the phone with me and said, "Well, PANDAS doesn't exist. There's nothing to do here." And it was very frustrating. And I ended up...we went back, tried to figure this out. And my wife and I had remembered hearing a lecture by a guy from New York named Dr. Kenny Bock who had worked with kids with autism and several other difficult disorders, ADHD. And my wife even remembered that he had given a lecture on PANDAS once. And so I sent them off. They got on an airplane and went. And he said, "That's right. She has PANDAS and she needs intravenous immune globulin, IVIG." It's a blood product these kids get and it can be dramatic improvement. So I said, "Great." They came back. And I called a pediatric neurologist here who I knew used IVIG for other children for other reasons and told him all of her symptoms and told him what was going on and he basically said, "Why don't you just put her on antipsychotic medicine and put her into a mental institution?" You know, not my kid. I wasn't having it.
And we kept looking. Finally found someone in Chicago. It was the closest we could find. There was no one at that point in Indiana that did this work and gave her IVIG. And so we went up there on a fieldtrip, Emma and I, and she got IVIG and four days later her symptoms were gone.
So just amazing. And what then developed out of that is we had already opened our functional medicine office at this point but that was a pivot for me and I ended up seeing these kids which is hard. It's always a little bit of PTSD for me in a way when I see them just remembering how bad Emma was, but giving those folks hope and then seeing recovery sometimes with IVIG and actually sometimes without. There are other things you can do to avoid using IVIG but the recovery is really great. And it's a bit of a problem because mainstream medicine and pediatrics even doesn't really believe much in PANDAS. And there's another form of it calls PANS. So PANDAS is associated with strep but some kids get this neuro-inflammation from other infections. What we do know is that you can get it from mycoplasma infection. Also with influenza and there's a strong suggestion that Lyme disease may also cause this and when it's not due to strep we call it PANS, pediatric acute onset neuropsychiatric syndrome.
Dr. Hedberg: And so this is caused by streptococcus and a few other microbes that you mentioned and these have been around for thousands of years. So is this something that is a recent phenomenon or are there any hints of this in any writings or literature that goes back hundreds of years or even thousands of years?
Dr. Antoine: So the answer is yes and no. We know that Sydenham's chorea is an autoimmune encephalitis associated with strep infection that occurs a few weeks to a few months after a strep infection. And we've known about that for years and also known that you can treat that with IVIG. That's usually very severe. The kids don't typically have behavioral changes but they have severe tics, whole body tics, difficulty walking and we've known about that for many years. Interestingly enough, with the facial tics and some of these kids have a lot of throat clearing and defiance, it's suggestive that Gilles de la Tourette, the gentleman that found Tourette syndrome, that many of the kids in his original series probably had PANDAS based on the writings and the case description.
And I say yes and no because we now are seeing this much more commonly and so these folks are cropping up everywhere and I sort of have theories as to why that's the case, similar to why you see an uptick in allergies among kids and mental health in general and autism as well. I don't subscribe to the theory with autism for example that, well, we're just recognizing autism more now. If you look in 2008, autism was maybe 1 in 188 children. Now it's about 1 in 63 the last I checked and the definition of autism between 2008 and now has not substantially changed. So we're definitely seeing an increase in neuro-immune inflammatory brain disorders.
Dr. Hedberg: So for any of the parents listening, we're looking at symptoms of things like obsessive compulsive disorder, facial tics, loss of bladder control, insomnia, defiance. I do remember when oppositional defiance disorder, people started talking about that I think about 14 or 15 years ago. Anything else that people should look out for to identify this condition?
Dr. Antoine: So there is a neurobehavioral unit associated with the National Institute of Health and that's the folks that have done a lot of the work on this and they've published in the Journal of Adolescent and Child Psychology some really extensive articles dealing with their research and definitions of PANS and PANDAS as well as some treatment options. When, you know, to use IVIG, those types of things. And I always say, you know, "If I had have known then what I know now, I would've asked one of those physicians, you know, why did they have an inpatient unit in Washington, DC for these kids and they're using IVIG and high dose rituximab and other immune suppressants."
But definition wise, the classic definition that's been published has been children between the ages of three and puberty, sudden onset of either obsessive compulsive disorder or restrictive eating. So there are a subset of these kids, they're my least favorite to treat because they refuse to eat either due to the texture of the food or most often they are convinced that they're going to choke if they eat.
And so commonly when I see those kids and they come to me, they've had an extensive GI workup, they've been scoped and people have said, you know, we think you have eosinophilic esophagitis or some other digestive disorder or maybe reflux, and to no avail and when you really put the picture together, so it's either OCD or restrictive eating, and then there's a host of minor criteria that you have to have at least two or three of. Some of them you had mentioned which was defiance. So defiance, defiant type behaviors, facial tics. You can also see sensory integration issues, kids that suddenly won't put their shoes on, a common presentation. They just wake up one day for school and will not wear any shoes in the house.
