Overcoming PANDAS with Dr. Scott Antoine

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.

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. You will also see loss of bladder control. So you’ll either see wetting the bed at night or urgency overflow incontinence during the day where these kids who were potty trained, I mean, they’re 8, 9, 10, 12 years old and suddenly they start wetting their pants which is very embarrassing for them.

You will also see…one of the other minor criteria is deterioration in school performance. I actually have some pretty dramatic pictures of one of my kids that I was taking care of, before and after handwriting samples and their handwriting becomes similar to that of a toddler. And these are kids 10, 12 years old. They also lose the ability to draw. Some spatial issues develop. And they develop margin drift when they write so they’re…when you’re normally writing down on a piece of notebook paper, people write against that margin on the left side. They will gradually drift. So they’re gradually more over to the right. So these are some of the things we see.

And what’s interesting as well is there have been some recent discussions among some colleagues and I nationwide about the fact that some of these kids were not seeing with this sudden onset story. And I think it’s either because there is a spectrum of time when these kids can develop symptoms or in some cases the parents don’t initially register until it gets further on. In my daughter’s case, you know, when she came to us with hands that were bleeding and that she had been compulsively washing, it was easier at that point to figure out there’s something really wrong here but initially, months before that in retrospect, we were at Whole Foods one day shopping and she started lining everything up on the conveyor belt at Whole Foods and I would mess it up, she would line it up. And looking back, that was likely the beginning. It’s not anything she’d ever done before or since she has gotten better.

So it can be difficult but it’s important. Not every child who comes to see me with a concern for PANDAS has PANDAS. It basically has to do with the physical examination of the child, the story. Also many of these kids have a family history of autoimmune disease and about 40% of them, when we do blood testing will have an elevated antinuclear antibody otherwise known as an ANA. It’s a test that’s commonly elevated in diseases like lupus or scleroderma or rheumatoid arthritis, some of the other autoimmune diseases, but in about 40% of these kids and it supports the fact that this is an autoimmune phenomenon.

Dr. Hedberg: Let’s talk a little bit more about the testing for the practitioners that are listening. So probably you’re doing, I would imagine, CBC, ASO titer or some specific microbial tests like mycoplasma, you mentioned, possibly Lyme disease if that stands out. What kind of blood tests and other lab tests are you doing on these patients?

Dr. Antoine: So the initial thing that I always say and I’ve said it when I’ve taught residents and also when I’ve spoken in functional medicine circles is, “You know I’m a doctor first so you don’t want to…when you’re seeing, in a specialty setting such as ours, you have to be really diligent at looking for other things.” For example, you can have issues with central nervous system pathology. For example, brain tumors. So some of these kids will come in with development of severe migraines over relatively short period of time and there are children then that we will send for an MRI to look at their brain and ensure there’s no structural lesion. Also as you mentioned, we will do typical laboratory testing. Iron deficiency can cause changes in behavior as well. So we will check serum iron as well as the ferritin level. We check CBC as you certainly mentioned, liver function tests looking for other causes. We also check thyroid studies. And in my other population of kids that I see in the office, I don’t always check thyroid studies but there is a phenomenon known as hyperthyroidism or autoimmune thyroid disease that can present with an encephalitis like picture. So sometimes if the thyroid testing is really off…now typically those kids look a little bit sicker but I’ll check thyroid.

Some of the other things you mentioned. There are some specific antibody tests to look and see if there’s been a recent strep infection or a strep infection over the last few months. So to look at an infection within about the last six weeks or a month we would do an ASO titer, it’s a strep antibody titer. And then to look for a strep infection that’s maybe a little bit further out, two to three months, we do something called an anti-DNA, ACE test. And that’s another type of strep antibody.

However, what I will say is that often especially if you’re talking about a case of PANS that’s not due to strep, those tests will be normal and I’ve seen some patients who have come to us who saw someone who perhaps had some knowledge of PANDAS, tested those antibodies, the ASO antibodies and said, “Well, your ASO antibodies are negative so this can’t be strep, this can’t be PANDAS.” And that’s actually not something we see.

We often test for tick-borne disease. So we will test for Lyme disease. The difficult thing to test for at times, a lot of these children have immune deficiency which I think is how this starts. That’s one of the prevailing theories because, you know, children get strep all the time and not all of them have this issue. So when we test, we will a lot of times find that immunoglobulin testing like IgG testing will show low levels of immunoglobulins and so when you see that, that can be a tipoff as to why you have this abnormal immune function which then allows antibodies to cross the brain barrier and cause these symptoms.

So we do test for immunoglobulins. As I mentioned, Lyme disease, although one of the things we look for to make the diagnosis of Lyme disease is look for IgG antibodies and if their levels are low, they may not make them. So that can…you can get into this difficult situation. Also Bartonella testing. Bartonella’s another tick-borne disease. It’s also caused by cat scratches but it can be a cause of PANS. So those are some things that we would typically look for. And within the last probably six months I’ve begun testing all of these children for urine mycotoxins and many of them…I hesitate to say all about anything in medicine because I don’t think that’s ever good. Medicine’s a science of exceptions. But what I will say is almost every one of these kids will have had a mold exposure and my sort of unpublished theory that I don’t specifically have numbers but looking at these kids after seeing hundreds of them, a lot of them end up having mycotoxins and we know specific mycotoxins or mold poisons that are in the environment will depress your immune system. And once your immune system is depressed, these kids, when they get Lyme disease, when they get Epstein-Barr virus, when they get influenza, then their immune system does not know how to respond and doesn’t respond normally. So we also check for Epstein-Barr which can cause a lot of issues.

So those are some of the other things that we would look at but chiefly, there are times when these tests are all normal but you have a clinical exam and history and physical of a child sitting in front of you and you say, you know, the antibodies are currently negative but clearly there was an insult which has occurred. I’ve had two children so far and it’s just been from within the last two months who went to the Panhandle of Florida when there was a red tide which was about a year ago, two years ago. Red tide is when there’s algae in the bay, in the ocean water. And these kids then developed their illness immediately following returning from those trips. So two children, exact same story. They had been in the Florida Panhandle when this red tide occurred and we saw a lot of people who had asthma triggered and everything else in the general population with this. But two children curiously recently with that similar story.

Dr. Hedberg: So once you’ve made the diagnosis and it seems clear that the child has PANDAS or PANS, let’s talk a little bit about treatment. So you mentioned IVIG as one method. And what other methods really stand out that you’re using in your practice?

Dr. Antoine: So, you know, we have sort of a process in our practice and the first step is identify, which is all the things we have kind of been talking about, you know, has your child been sick? And going through the list and tell me about the story. It’s really important obviously to get that story. But once you’ve identified it, you believe that you have a case of PANS or PANDAS, then the next thing that we do is look for things that are negatively impacting the child’s health and reduce them.

So classically, we would look for anything that’s contributing to inflammation. We start obviously with diet being functional medicine practitioners but at the same time, when children have restrictive eating disorder, that’s difficult to do safely. Some of these children, if they’re severe enough, will end up in the hospital on IV nutrients. So you have to be a bit careful. And there are parents who have had such bad restrictive eating…I’ve told their parents, you know, “At this point, if you can get Jell-O pudding into them, then let’s just do that, try and get some protein and whatever that’ll do to, you know, to keep the weight on and keep them out of the hospital and then we can kinda…” It’s in terms of treatment priority.

So once you’ve tried to do that…but we do our best to fix their diet and lose any additives and preservatives. We remove routinely gluten and dairy which can be neuro-inflammatory. So we do that as best as we can. I don’t tend to remove other grains because they tend to lose weight whether or not they’re restrictive eating anyway. So we typically leave other grains in but really ask the parents to clamp down on what’s organic.

So the next thing we do is some general natural methods to try and reduce neuro-inflammation. So we do use curcumin. We have a curcumin chew in our practice made by Designs for Health. It’s really helpful that the children like…it’s like a chew and it’s got a good flavor to it but it’s got a high dose of curcumin in it so that will help. We also typically test and treat if their vitamin D level’s low because vitamin D is a help to the immune system.

We will typically initiate probiotics and omega fats if we can get them to take fish oil. We will also start some antioxidants. And then when you start looking at it from there, if you look at the traditional guidelines for PANDAS that have come out of the National Institute of Health, there’s sort of a decision tree. And people will typically…when the child’s in an acute flare, you’ll try and test. You can do throat cultures and things to look for strep but honestly, those things don’t really help you decisionally and if it’s a difference between holding a child down to get a throat culture and just going ahead and treating, in these cases it can be helpful.

So often we will start a trial of antibiotics. Typically we’ll use something like Augmentin which works against strep and there’s a component in Augmentin, clavulanic acid, that actually has been shown in studies to reduce brain inflammation. So that’s a common antibiotic we will choose. If there’s a suggestion that it could be Lyme or mycoplasma which is another organism, we can test for antibodies too. We may choose erythromycin for a period of time and commonly, we will do this for one to three months. You can also…if a child is very bad and occasionally I will get the late night phone call or email that a child is decompensating and having a really hard time, obviously we tell the patients, “Safety first. If you think they’re gonna hurt themselves, get them to a hospital.”

But you can also do prednisone, a taper of prednisone which is a steroid. You know, we don’t like to use antibiotics or steroids if we don’t have to but sometimes in these cases it really helps them quickly turn the corner and then we get them off as soon as we can.

If the child is severe or if the other things that you’re doing don’t seem to be helping, then we have to consider whether to use IVIG. IVIG is a blood product. It’s intravenous immune globulin so it does have to be given intravenously. We will give IVIG over about two days. It’s relatively high dose IVIG over two days so it’s an eight hour infusion, two days in a row. We typically do the first dose in our office and then try and get it approved for home administration because these kids tend to be much more comfortable in their home.

IVIG can range from a single treatment of IVIG although in clinical practice most of us have found that these children need to do IVIG for some period of time, usually months to years. And the difference that you see with IVIG is pretty profound. So it’s difficult to get covered by insurance. Very difficult. Many times, insurance…if you write PANDAS or PANS anywhere on the chart, they will just summarily deny it. So we look for other causes of immune deficiency. A lot of these kids have an IgG deficiency and so if you can document that they have that deficiency, plus frequent infections, that’s an indication generally to get IVIG approved. So we…I spend a lot of time on the phone talking to insurance companies, trying to get things approved. And the reason is that IVIG is about $17,000 a dose.

So it’s obviously out of most parents’ reach if it can’t be covered somewhat by insurance. There are some states, Illinois for example passed a law and the insurers are not allowed to deny coverage for IVIG based on a PANDAS diagnosis. We’re hopefully working soon to get that law passed in Indiana. I’d like to see that elsewhere as well because these kids, many of them are suffering and sometimes you get to the point where if you can’t offer IVIG…but I’ve had a string in the last six months of children who have done really well without IVIG and a lot of it has to do with if they’re in a moldy environment, getting them out of that moldy environment, getting the house remediated or a lot of times, that can be a school that has mold in it. We know schools are typically built by the lowest bidder. And so I can remember in my high school, walking around, buckets in the hallway when it rained and having drips come through the ceiling or having discolored ceiling tiles. So that ends up being difficult if parents can’t move schools or can’t home school. But sometimes that’s something that needs to be done.

Dr. Hedberg: Why do you think there’s so much resistance to this condition in conventional medicine? Is it just because there’s just not enough published literature on this or do you have any ideas why there’s so much resistance?

Dr. Antoine: So that’s a really interesting topic because a lot of what you do I’m sure and what I do is sometimes frowned upon by conventional medicine and I think that the reason that’s the case, it’s sort of a whole other talk that I talk about, which is evidence based medicine. And when I finished residency in the ’90s, there was this big push for evidence based medicine which I think is good. You don’t want people out there misrepresenting drugs or even supplements or anything else and saying, you know, “This will cure your cancer,” or, “This will treat your child when they’re…you know, have meningitis,” when it’s not gonna be the case. But what happened was the original articles on evidence based medicine said, “To be evidence based, you had to have two of three things.” One was peer-reviewed literature. One was clinician experience. And one was patient preference. So the article basically said, “If you have two of the three of these, then you’re practicing evidence based medicine.” And in our office, we typically have patient desire. They desire to get better. They are putting their trust in us because they believe in us and in our experience. And so then we try and turn to the literature and, you know, there are a few things I talked about that are typically literature based and there’s now a growing body of literature. There was just a study published within the last year on IVIG from Italy and how well these children did after getting IVIG.

And so that’s…the issue though is what’s happened is a lot of academic centers have discounted the clinician experience and so they’ll basically say, “You know, we’re not gonna institute any change in anything that we do unless we have a 40,000 person study.” And no one really wants to be in academic medicine and then be embarrassed because someone finds out they’re doing something unlike everyone else. And, you know, the surgical specialties are actually much better at doing this because, you know, someone had to be the first person to do a laparoscopic gallbladder surgery or, you know, a heart transplant. Those were things that weren’t written about. But in general medicine and office based medicine people a lot of times are unwilling to do that. I was giving a talk about two years ago and I was talking about vitamin D and the benefits of vitamin D on the immune system and cancer and everything else and I presented several studies that were, you know, 200 patients, 500 patients, 1,000 patients and 1 of the physicians in the audience… You know, I presented it and showed a study which showed that if women have a vitamin D level of 52 or higher, they have an 83% reduction in risk of breast cancer. That’s amazing. It was more than 100 patients I think but someone in the audience, a physician raised their hand and said, “Well, I’d like to see a study done with, you know, 10,000 or 20,000 women and see if that’s actually true.” And I sat and thought, you know, “We’re talking about vitamin D. We’re not talking about chemotherapy or something that could be potentially harmful if you’re following the vitamin D level and you’re supplementing these people and you’re seeing this great study.” And so I turned it around a bit and said to him, “If in your office you treated 100 women with vitamin D and you saw a substantial benefit, if you were keeping records, would you not keep treating them with vitamin D?”

So there’s definitely been a loss of clinician experience as being important. You know, for people like you that do hands-on medicine, I mean, you’ve seen it a hundred times that you’ll see the benefit you can give someone just by touching them.

Dr. Hedberg: It doesn’t allow this…you know, when we’re too rigid with evidence based medicine, it doesn’t allow for anyone to be a pioneer. I mean, you just can’t really be on the front lines in the trenches working with conditions that could be relatively new or rare or just something like PANDAS that conventional medicine hasn’t really caught on to yet. And so we can’t ethically as practitioners just wait around for studies of, you know, 40,000 plus people to be done.

Dr. Antoine: That’s true. And the thing with nutrients, whether it’s dietary change, exercise, vitamin D, vitamin C, any of those things is, you know…I’m not an anti-drug guy. I’m not a conspiracy guy but, you know, there’s no money in it. So vitamin D can’t be patented. So if it’s not patented, typically, you know, funding for a large study, unless it’s in an academic center, you know, pharmaceutical…they’re not gonna typically fund that type of research. And I understand that. They spend millions developing other drugs and I’m a big fan of drugs when they’re needed. But that can definitely…you hit the nail on the head is, you know, if you know how to help a patient and you’re waiting around out of fear or not wanting to be, you know, questioned professionally, you’re really doing the patient a disservice if you don’t bring them some benefit.

Dr. Hedberg: Right. So for the parents out there and the clinicians listening, if your kid has PANDAS or you suspect it or if you’re a practitioner and you suspect it in the kid and you just don’t really have experience with it, obviously, you know, people would wanna look you up. But for someone who can’t travel or wants someone locally, is there some way to find practitioners that are skilled in treating these conditions?

Dr. Antoine: There is actually. The PANDAS Physician Network is a great…and I don’t have the website off the top of my head. I think it might be ppn.org. But PANDAS Physician Network is a website. There is a provider finder on there. And also interestingly, clinicians can join and there is a host of training on there to help people learn how to treat their first child with PANDAS. And, you know, it’s…there are many diseases that are scary. You know, cancer, any of those things. They can be scary. Heart disease is scary. The thing that makes PANDAS so tragic and why I feel that I’m willing to stand on the steps of the Capitol and be ridiculed for it and that’s fine… You know, my daughter was my wife’s mini-me and they sat many nights together in bed doing Bible study and were two peas in a pod. And when my daughter got sick, it was like someone swooped in and she disappeared. And I’ve heard many parents say this that they feel like their child was abducted and replaced by an alien. It’s just it’s so different.

And so yeah, I really think that we owe it to people. But PANDAS Physicians Network is a great source. In fact, there’s lectures on there by some of the physicians from the National Institute of Health. There are now PANDAS centers cropping up. Stanford has one and there are several in Washington, DC and several other places. And actually the American Academy of Pediatrics at their national meeting, the PANDAS Physician Network had a booth. And so they are attempting to educate people just because this is such a devastating disorder.

Dr. Hedberg: So you have a particular process in your practice called the Fully Functional process. Can you talk a little bit about how you practice functional medicine and this particular process you’ve developed?

Dr. Antoine: Sure. And so this…looking at what we did with our daughter and looking at what we did with our patients, we sat down maybe two, three years ago and said, “You know, we’re seeing patients improve. What are we doing to get things better?” Because we had done…I had done training through A4M. I’ve done training through IFM. I’ve done training several places and there are different training programs but what I felt like was missing sometimes was sort of a roadmap. You know, if you know all these things, you know about the microbiome, you know about vitamin D and you know about these things, is there something that you can go through to make sure you’re checking all the boxes, you’re hitting all of the bases that’s individualized for each patient and then that gets them better?

So we…when we…you know, we reviewed charts and we went through things and we decided… And I alluded to it a little bit earlier. So our first step is identifying the issue. Identify is our first step. And so we try and identify anything that’s adversely impacting health and that could be infections but it can also be where you’re living, it can be stress, it can be relationships. It can be really any of those things and sometimes it’s difficult to figure out. You know, the best…Osler, famous physician in the 1800s said, “If you listen to the patient long enough, they’ll tell you what’s wrong with them.” And, you know, office based medicine, there’s such a time pressure that a lot of times your physician might only have 10 or 20 minutes. They have to see 40 patients a day to keep the office afloat. And so it’s not really their fault that they don’t have time to delve into all of these things. So we’re fortunate to be able to spend an hour and a half or two hours at our first visit. So we identify. Part of identifying is also the physical exam. People sometimes ask, “Do you see patients remotely?” And I say, “Well, we require our patients to come in at the office for a first visit. Then we sometimes can do remote follow-ups by telephone or Skype.” But I really feel like the physical exam, touching the patient’s a bit of a lost art and we found a lot of things on physical exams. So identify. Lab work can be part of identifying, radiology studies.

Once we identify what we think is going on, the second step is reduce. So we try and reduce what’s adversely impacting their health whether it’s inflammatory foods or stress or a physical living environment. If we have a family and we uncover the fact that, you know, the house has had several water leaks or they know that there’s mold in the house, I will typically tell the parents, “Look, this is tough but I’m gonna ask you to try and take your defiant ill child and see if you can get them living somewhere else.” Because just moving out of a contaminated environment a lot of times will help improve the patient’s behavior and their ability to cope with what’s going on. So reduce…

We’re also, you know, trying to reduce inflammation. We talked a little bit about some supplements and things to do for that and certainly steroids and some parents will use ibuprofen. Once again, not my favorite first line but when you need to, sometimes they can be helpful in reducing inflammation.

And the third step is optimize. And this is talking about chiefly optimizing detoxification. So we are all detoxifiers. We pee. We poop. We sweat. Sleeping and dreaming is a mental detox. But you’re trying to optimize, and this is one area that other than in my toxicology training when I worked in a poison control center in residency, people don’t really talk about detoxification, you know. There we talked about detoxifying people from acute Tylenol overdose or theophylline or, you know, heroin but in… As you know, detoxification is a process that goes on within us. So when we’re trying to optimize detoxification, we recommend things like infrared sauna. Just getting people sweaty, exercising, things like that. Making sure there’s no constipation. A lot of these kids that have PANDAS and adults with other issues will end up being constipated. When you’re constipated, all those toxins that your body’s trying to rid you of as the stool is sitting in there not being expelled will get reabsorbed into your bloodstream. So making sure they’re going to the bathroom. And then there are specific supplements that you can use to upregulate liver detox so things like silymarin and broccoli. Speaking about, broccoli is a great food that will help you upregulate liver detox. Then there are some other things we use if we feel that there’s either an environmental toxin or a mycotoxin illness in the child. You can use some charcoal. You can use chlorella or clay. You can also use citrus pectin, some other things you can use to help optimize detoxification.

And the fourth step is support. And so we try and support a healthy immune system. So we will use a lot of times low dose naltrexone which is a compounded medication that will help regulate the immune system. We also try and support a healthy body. We talk to parents about protein intake, vitamins, antioxidants, all of those things to help support the child. And then we have parents and the child meet with the health coaches here at our office. Typically, that’s actually more for the parents to help them get through this. PANDAS, as a parent, is a really lonely disease. You know, I always tell parents, “You know, if you, God forbid…” If a mom is sitting there in front of me I say, “You know, God forbid, but if you develop breast cancer, people develop a Facebook group for you. They bring you meals. But when your child has what looks like mental illness and is defiant and having these tics and outburst, people are scarce.” And that’s what happened to us. A lot of the folks that we really thought were friends really disappeared.

So we’re here to support the moms specifically but both parents and we commonly tell them, “Make sure you’re having date nights. Take your other children out alone without the ill child so that you can maintain those relationships.” And PANDAS is really hard on families. Moms tend to have a really strong feeling of guilt. I recently put a blog out a few days ago. It was actually written by one of the PANDAS moms. I had mentioned to her because typically these moms will sit in front of me and say, “You know, maybe it’s because I didn’t take my prenatal vitamin because I was sick. Maybe that’s why this happened. Or I knew I shouldn’t have, you know, used so many antibiotics for ear infections or, you know…” on and on and on, or moms that say…they’ll start out almost all their sentences with, “Well, I forgot the medical records from the other doctor. I guess I’m just a bad mom.” And I always stop them and say, “You know, none of this is your fault. Sickness is a condition in the world we live in. We live in a toxic world.” And I mentioned to a mom that I was gonna write a blog called “Mom, it’s not your fault,” just because I’d heard this so many times and this mom went home and two days later sent me a copy and it was much better coming from her because she’s lived it, about the fact that it is really not your fault and that you’re…you know, the moms that end up here, I tell them, “You’re a superhero. You did your research. You know, when doctors told you there’s nothing wrong with the child or that they need to be on antipsychotics or antidepressants, you went the extra step and said, “I’m not gonna have that for my child.” And those medications sometimes even in PANDAS have their place in managing acute behaviors but I think all medicine should be temporary and if you need to use them for the interim time.

So that’s the support pillar. And then ultimately, the last phase in treatment we talk about is personalize. And so this sort of looking at each person as an individual. It’s the other reason we can’t do huge studies on a group of, you know, populations because in the type of medicine that we do, we end up treating each person as an individual. And so I’m not just taking someone…they come into the office, I give them one nutraceutical or one medication, send them out, bring them back three months later and say, “How did that work?” So we’re doing multiple different…try and balance all of the different areas of the body and the immune system and the brain and inflammation at the same time.

So it ends up being a personalized thing. And the other piece of personalization is internalization. So getting the children kind of on board and to say, “Listen, I know you’re scared, I know you don’t feel good, you know, but we can get through this and, you know, you just have to hang with us, take the medications, take the supplements, try and avoid inflammatory foods. Be kind to your parents.” And a lot of times we will have…we will recommend cognitive behavioral therapy that worked wonders on my daughter in helping her get over the OCD and fear of contamination. And that was a whole exciting experience in and of itself, doing exposure therapy with my daughter to help her not think that everything that’s contaminated in her environment was going to kill her.

Dr. Hedberg: Right, right. Well, this has been really excellent. Why don’t you tell everyone how people can reach you? You have a website and you’re on social media. How can people find you?

Dr. Antoine: Right. Great. So our website for our practice is www.vinehealthcare.com, so www.vinehealthcare.com. So we’re on social media. Dr. Scotty Antoine, A-N-T-O-I-N-E is my Instagram handle. My wife is Dr. Ellen Antoine. And we also have a Facebook page which is Fully Functional at Vine Healthcare. And, you know, our whole goal in all that we do in our practice is to be the best and to give people a lot of value. So I always tell folks when people call our office to make an appointment, I tell them, “You know, there’s a lot we can do for you even if you don’t end up being able to come in person to be seen. We have an online reboot program. We have health coaching virtual appointments.” And there also is quite a bit…you can see if you go to our social media, there’s quite a bit of value and material that we send out to people just because we wanna provide value and help people get better regardless of where they’re in in their health journey.

Dr. Hedberg: Excellent. Well, thanks for coming on. And to all the listeners, go to drhedberg.com, you can search for Dr. Antoine and PANDAS. And there will be a transcript of this interview posted there for all the details and I’ll have links to Dr. Antoine’s website as well in case you wanna reach out and make an appointment.

Well, thanks for tuning in, everyone. This is Dr. Hedberg. Take care and I will talk to you next time.