Decipher PANS, PANDAS, And Their Ties To Mold Exposure

Scott Antoine, DO, FACEP, ABOIM, IFMCP

It is my pleasure. It is always great to see you.

Ann Shippy, MD

Thank you. I know this has been quite a journey for you and your family to become experts in this because we are not taught this in medical school. I think still in medical school, it is hardly getting covered at all, even though it is well established now that it is a very important clinical diagnosis. if you would start by just telling us how you became an expert and how it affected your family.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Sure. We have a daughter, my wife, Ellen, who is also a physician, and we practice together. We have a daughter named Emma. She is 21 now. When she was 12,

Ann Shippy, MD

She got old that fast.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

When she was 12, she came to us one day and said, I do not think I am a good person. I do not think God likes me. We talked with her.

Ann Shippy, MD

The worst thing a parent can hear.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

We talked with her, and we thought maybe it was just pre-teenage stuff. Then, a few days later, we noticed her hands were just raw and chapped. She was washing them multiple times a day. She lost the ability to get herself to sleep, and just to be compliant, our most compliant of our five children, a once compliant sweet girl, just became a terror. She kicked the door off the hinges twice in our bedroom, and she was about 85 pounds—a total overnight change crippling OCD. She could not eat anything we made for her. She thought the food was raw, and it was a mess. We called a pediatrician, of course, and never got a callback. The reason we called was that Ellen started searching and searching the medical literature and figuring out what was wrong with our neurologic exam was otherwise normal. There is something strange going on, and I came across the diagnosis of Pandas, which is pediatric acute-onset neuropsychiatric syndrome.

Ann Shippy, MD

At that point, it was hard to even find anything about it.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

It was. It is a disorder associated with strep. In this case, these kids will get a strep infection, and then a period afterward—it can be weeks; it can even be months. They will develop antibodies to strep, which will then attack their brain and give them all of the symptoms Emma had and more. There is also a related phenomenon, PANS, which is pediatric acute-onset neuropsychiatric syndrome when it is not associated with strep. We know that it can happen for multiple other tick-borne infections, mycoplasma, and other things. She had some of each of those when we did testing on her, but we initially did not get a callback. We looked and looked and finally found a physician in New York who got on a plane with Emma amid her terrible OCD and took Emma to the physician. He took one look at her and said, This is a PANS, and she needs an IVIG. They came home, and we thought, Great, we will at least know what to do now. I called a physician, a neurologist here, a pediatric neurologist here where we live, and said, Look, this is the deal with my daughter. This is what is going on. We think it is PANDAS, and she is having all these symptoms. Can you help us get an IVIG? He said she just needed to be on anti-psychotic medicine and put in a psychiatric ward.

Ann Shippy, MD

That is so upsetting.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

We just said, not our daughter. That just does not make sense; none of this makes sense. This had an immediate onset. We got an MRI, got multiple other things, got other people involved in the care plan, and found a physician in a nearby state who did IVIG for PANDAS. Four days later, her symptoms were gone. It was an incredible journey. At that point, due to this struggle that we had, even as physicians within the medical community, getting someone to believe us or to investigate or figure out this potentially reversible cause of what looked like a psychiatric illness, I just knew my specialty had found me. I said, This is what I need to do, and I also need to make it more friendly. I need to make it easier for people, and I need to make it more complete. Once I got into treating these children, there were parts of this that I had to change, modify, and tweak because, even within the community of physicians treating PANDAS, there are a limited number of treatment options. Fortunately, through study and clinical experience, we have been able to expand that to a point where we have been very successful in treating these cases.

Ann Shippy, MD

That is just life-changing for individuals and their families to be so aware of and adept at this treatment. For those people who are not that familiar with PANS and PANDAS, I would love it if we just stepped back for a moment and if you could talk about the most common symptoms that you see and the things that make you most suspicious, that is a diagnosis.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Sure.  the classic criteria and I always say classic because we see lots of kids that do not quite fit the classic criteria, but still, something’s up. The classic criteria that were developed by the National Institute of Health in about 2014 or so said that children had to have either sudden-onset severe OCD or eating restrictions. The eating restriction does not look like a picky kid. It looks like these kids will say, I feel like I am going to choke. I cannot eat; I cannot swallow. They can end up hospitalized with a feeding tube, needing feeding and/or nutrition. One or both of those OCDs or restrictive eating, plus at least two of the following seven categories. The seven categories are things like anxiety, particularly separation anxiety, labile mood or depression, school changes, and school deterioration in performance for some reason, and I do not know why a lot of these kids that come to us and were originally gifted children and then ended up it is that they ultimately cannot do math, which was our daughter’s case. They will also end up with somatic signs and symptoms, such as very frequent urination, wetting their pants in the daytime, and wetting the bed at night when children were previously potty-trained. They also develop physical signs and symptoms, including tics, motor tics, and movements of their fingers or hands.

The most common are ticks involving their face or head, so they will squint. I will never forget my daughter. When she was sick, she would come to us, and during this flare, she would do this with her eyes. I kept saying to her, You are a teenager. You are supposed to be better at rolling your eyes at your parents than that. I was embarrassed later to figure out that this was a tic. A lot of these kids will have a mouth opening, or they will clear their throat, and then they will see the doctor, and they will be told they have allergies. But the kids will, or they will sniff. But when I say it is multiple times in an hour, it is over and over and over again.

They will also often have issues with coordination. They all have issues with their kid once riding a bike, and now that they cannot stop or are falling, they suddenly become extremely clumsy. These symptoms in this other group, I will tell parents that these kids, when you see them, all look alike; in other words, they all present severe symptoms. It is a severe, sudden change. It is not mild. Initially, the criteria were to be applied to children between three and 13. It turns out that the distinction was made to get an identical group so that they could study and whatever. But it turns out we have seen children who have had an onset in their late teens. I have seen a few adults that either represent missed cases as a kid or that developed this later on in life.

The classic story is, of course, the reporter from the York Post who wrote Brain on Fire about her experience developing autoimmune encephalitis as an adult. We have seen older cases, so there is no age restriction. I find that below the age of four or so, it is difficult to tell. Kids at that point have a hard time telling you that they are having intrusive thoughts or OCD. You just see a big behavioral change. But we have children who come to our practice, and the parents say if it was not a sudden onset. What do I do? That is a thing that has been studied since the criteria made it possible for up to 40% of kids, and it is not sudden. In our case, it seemed sudden with their daughter. But when we then looked back, we found that over the six months preceding, when we would sit down and say a prayer before we ate, she was progressively praying longer and longer. We would all start eating, and she was still sitting there with her eyes closed, her new lips moving, praying. After we were all finished, we initially thought it was not nice, but it ultimately ended up being part of a religious obsession.

A lot of these kids will have a religious obsession. A lot of times, you can see an obsession with sexual topics as well. They will begin to be very upset about sexuality, or they will have sexual thoughts sometimes about siblings, a parent, or even a teacher at school, which is alarming to parents because they start thinking, Gosh, did something happen to them somewhere terrifying?

Those are the criteria. But as I said, they are to be loosely applied because if you had a child with three of those things but they did not have OCD, then something’s still up. That could still be at a time when our parents will come to us and treat us. Fortunately, the comprehensive nature of the way that we treat children tends to help give us victories in those areas, too. But you will notice I did not mention lab tests or radiology tests. It is a clinical diagnosis alone. One of those.

Ann Shippy, MD

Is some clinical testing sometimes done to confirm the diagnosis, or do you just go based on clinical?

Scott Antoine, DO, FACEP, ABOIM, IFMCP

The diagnosis itself is just based on the clinical presentation, and we do tests. The reason we use the test is, number one, to rule out other things. One of the things that I should mention when you have these criteria is that there is a little asterisk at the bottom of the criteria. I tell people this every time that something is not better explained by another neurologic disorder. There are times when these children will need an MRI to look for a structural lesion and make sure that we are not seeing behavior from a brain tumor. There are times in severe cases where they may need a spinal tap to look for an infection, such as encephalitis of some type, viral or bacterial, or meningitis. There are others.

Ann Shippy, MD

Parents who do not want to miss those things for sure, yes.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

That is the thing. You do not want to say, Well, I have a hammer. Does everything look like a nail? We use tests that way, and then the other way that we use tests is to give us a signpost of which direction to go. If we have a child and we believe that it is PANS and PANDAS, many times we may start them on a course of antibiotics using our best clinical judgment as to whether we think this is more of a strep presentation, whether it sounds like mycoplasma, or whether it sounds like a tic-borne illness. That determines which antibiotic we may start with. But then, if we get an infectious disease test that points in some other direction, we change speed. A lot of this is playing chess; you make a move, you get additional information, and you might have to adjust course, and that is why it is personalized medicine.

Ann Shippy, MD

That is beautiful.  You have five kids, and one of them, I am sure, is going around the family. Why do you think one child over another is affected by PANS and PANDAS?

Scott Antoine, DO, FACEP, ABOIM, IFMCP

That is a great question. We could have times when we will have a sibling in a family affected by that. It did not, fortunately, happen in our family, although today, when you have this type of drama going on in your house and both of your parents are falling apart at a time because of it, it affects all of our other kids for sure. But what we tend to see in our practice is that for any autoimmune disease, there tends to be a genetic predisposition. As far as I know, as a mold expert, you will have a house that happens to be moldy; one person’s super sick, and everybody else seems fine. That is what tends to make people doubt that it is a thing. But there seems to be a genetic predisposition in these kids.

Then also, if you add to that increased intestinal permeability and then immune dysregulation, once that starts, that sets the stage. That is, why would strep do this to one kid? Millions of children get strep every single day, and it does not tend to do it to them. Although we think the prevalence of autoimmune encephalitis and post-infectious autoimmunity epilators may be as high as one in 200 children now that we have started looking for them, it is a great question. I think that it has to do with genetics, for sure. then obviously the environment and everybody processes things a little bit differently.

Ann Shippy, MD

You use the word immune dysregulation, and can you just elaborate on that for our audience so they understand what you are saying?

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Absolutely. Your immune system has the job of testing everything that you come into contact with, whether it is something you put in your mouth, touch, breathe in, or whatever else gets into your body. Your body tests it, and your immune system tests it and determines whether it thinks it is harmful. Sometimes it gets that, sometimes it does not. But if it believes that there is something more harmful than it mounts, some type of response or cell response sends white blood cells there to either eat or dismantle it, or it may make antibodies to things. We are all familiar with the concept of antibodies being a protein that recognizes something when you are introduced to it and fights against it. Autoimmunity in the body occurs when your immune system mistakenly attacks your tissues. What happens in these cases would be in PANS and PANDAS. We know there is experimental evidence for both, showing that in the case of PANDAS with strep, the same antibodies that attack the strep bacteria are similar on the outside of the strep bacteria.

It has proteins and little peculiarities about it that resemble a certain portion of your brain. If those antibodies cross the blood-brain barrier into your brain, they then attack that specific type called the basal ganglia of your brain region and then produce these exact symptoms. We have seen it in mice, dogs, and people. The autoimmune attack is the same. You would look at that and say, Well, I guess these people just have autoimmunity, their immune system’s way out on overdrive. True. However, we have also found that a significant proportion of these kids have low immune globulin. Those are proteins that make antibodies, and they also do not tend to make antibodies to immunizations; for example, other kids get antibodies without a problem. The problem is twofold. Your immune system should just sit idle when you are exposed to something. It should turn up the heat and take care of business, and then it should go back down and idle.

With these kids, that system is not regulated. At times, their immune system’s on overdrive and attacking their body in their brain, and at other times, the immune system’s asleep at the switch. They are susceptible to some of these illnesses. Look, a lot of these kids will, in general. A lot of people probably get strep and never get treated; that is not my recommendation, but they never get treated and they recover fine because they do not have this immune dysregulation. In these kids, whether it is strep or mycoplasma, it is also not a particularly bad factor. Even Lyme disease in some people probably does not produce clinical symptoms. But in these kids, when there is immune dysregulation, it goes haywire and causes this big, huge immune response. It is an issue of immune regulation to get that dial set so that you can respond when you need to. But at other times, chill.

Ann Shippy, MD

That is a great explanation of the immune system. I think people can get a good feel for how their immune system should be responding and what goes awry. You mentioned the IVIG, which has been the standard of care, and the allopathic physicians that recognize PANS and PANDAS. If you could explain the IVIG and why you think it works, next we will get into how you are helping patients without even needing that, because it is very expensive and not an easy treatment.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

IVIG is not an intravenous treatment. It is an infusion. It takes about 6 hours or so a day, two days in a row. IVIG is immune globulin. It is a protein that your body makes that it makes antibodies out of. What they do to make IVIG is take proteins and blood from thousands of donors. Between 1,000 and 10,000 donors are pooled to make one infusion—a lot of IVIG. What they are doing is taking a small proportion of your blood. The red blood cells are taken away, and the white cells are taken away. They are just filtering out to get to that immunoglobulin G called IgG. They take that. It also contains some other immunoglobulins, but the main one is the IgG, and then that is purified and put into a solution. Very safe. It is so filtered. There have not been many reported cases of transfusion infections that you might imagine with blood or other blood products, but intravenous immunoglobulin is given to people as an infusion. We do not know exactly how it works, but it is given for a lot of autoimmune diseases. How we think it works is twofold.

It seems to help remove abnormal antibodies from the circulation. Also, when you are getting IVIG because it is from so many different people, you have the benefit of getting their immunoglobulins from whatever they have been exposed to, whether it is mycoplasma, streptomycin, or whatever. So if you are a person whose immunity to IL is turned down and you are not making antibodies to things, there is a benefit to getting antibodies from the environment from other people who have been exposed to the same things you are being exposed to. We do not know exactly how it works. It also seems to have anti-inflammatory capabilities. They tested IVIG a few years ago. They did a study and found that most of the IgG contains active antibodies against strep, mycoplasma, and the Epstein-Barr virus. There is a benefit to it. But, as you said, it is very expensive. A single infusion, or two days of infusion, or IVIG, averages around $20 to $25,000. It is expensive. It also.

Ann Shippy, MD

Noting that most people can.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

It is.

Ann Shippy, MD

It is pretty tricky to get insurance.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

It is so that insurance companies have a blanket policy in many, many ways to restrict coverage against IVIG. They almost always initially deny it. Fortunately, due to the plethora of studies that have come out in the last few years, I have been able to successfully appeal and get it approved many times. To say that it is experimental or not, it has not been proven to be effective, and it is not evidence-based medicine. I point that out when I send letters back or do an on-the-phone peer-to-peer interview with them and say to deny this and say there is no evidence when I am giving you the evidence from professional medical journals, not evidence-based medicine. I have had pretty success—probably 85 or 90% success getting that approved. then in Indiana in 2019, I was part of an effort that lobbied the state Senate here. We were able to get a law passed that states that in Indiana, insurance companies cannot deny IVIG for patients of PANS and PANDAS.

Ann Shippy, MD

I did not realize that. That is impressive.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

We are one of about seven states now. Many other states are going, and it was an effort started by moms of children with PANS and PANDAS. They railroaded and stampeded their way into the Capitol in Indianapolis and started the ball rolling. Then I came in and testified, and we were able to get the law passed.

Ann Shippy, MD

Great job.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Thank you.

Ann Shippy, MD

Very important. Now you have gotten good at not needing the IVIG. I think you said only 10% of your patients need it because you find other ways to help get their immune systems balanced. I would love it if you would talk a little bit about that and some of the other ways of helping to get children treated.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Sure. There is an initial barrier, obviously, to PANS and PANDAS is a whisper down the lane. People have said in the conventional medical community, and I am a conventional medical doctor, but people have said, These things do not exist. I think because it makes you look at mental health in an entirely new way and say maybe this is not a case of a medicine deficiency. I am all for psychiatric medications in their proper context. But gosh, if there is a reversible cause, we do not need to get there. If you look at the folks that do believe in PANS and PANDAS and work with PANS and PANDAS, they do about four things. They will use antibiotics for infections.

Even then, they do not always consider other infections, tick-borne infections, mycoplasma, and other things they will treat for strep. Maybe, but they will take antibiotics. They may take IVIG, and they may take steroids occasionally. then they will also take medications to help behaviorally, such as psychiatric medications. That does work for people. IVIG was curative for my daughter. But for a lot of our patients, it is not. So Dr. Ellen Antoine, my wife in our functional medicine practice, came up with a protocol we called a fully functional protocol.

When we went through this, we modified it. Then, in the ten years following that, we continued to refine it and got it to a point. Now, only about 10% of our patients end up needing IVIG. The timeline of times, when I will order it immediately, is if I have a kid who is just absolutely out of control. I think they are either going to hurt someone else or hurt themselves, or if the child’s not eating, they are losing weight, and they are about to be hospitalized. It is time for IVIG now. But generally, what we will do in these cases is, as I always tell parents, four things. You have got to identify and treat infections. You have got to identify and remove toxins. You have to reregulate the immune system, and then you have to deal with neurologic loops, which are OCD, magical thoughts, behaviors, anxiety, etc. In identifying and treating infections, you have to know the infection you are looking for based on how the patient looks. You have to know the infection based on the testing you do and what the testing you do means.

We test for strep; we test for mycoplasma. We also test for tick-borne illnesses. By far the highest thing that we have seen in terms of tick-borne illnesses with PANDAS is Bartonella. We also see quite a bit of Babesia duncani; recently, I did not know why. But in the Midwest, where I live, it tends to be very prevalent. We do see Lyme; we see Beryllium Miyamoto, which was related to the line but would not be picked up on any conventional Lyme testing.

Ann Shippy, MD

Which test are you using for that?

Scott Antoine, DO, FACEP, ABOIM, IFMCP

The testing we use either uses GenX testing or I tend to use a lot of Infectolab testing. InfectoLab because it gives you interleukin 2 and interferon-gamma. Those are chemicals—inflammatory chemicals—that your body releases when you are actively fighting that particular thing. If you do antibody testing, even through a good company like GenX, sometimes it is hard to know whether it is just one of the antibodies or if you are seeing an old infection or a current infection. InfectoLab will show you that it will be elevated. It is a perfect test, I think, especially in kids, because if it is elevated, your immune system’s finding it. Then we will treat these kids with the appropriate antibiotics or herbals, and the infection will get better. Their symptoms will go away, and we will retest the infected lab, which is negative.

How do you test that? That will be helpful. We also do conventional testing. We do not do a Cunningham panel. A lot of people ask me about that. A Cunningham panel is a commercial autoimmune. It is the lightest panel available. The reason I do not do it is because it does not change my treatment at all. The one time I might do it is if I am trying to get IVIG approved and insurance is being a pain, then I can do it and say, Look, this child has antibodies to their brain. They have autoimmune diseases and all that. You have to prove ADHD. I have gotten away with that a few times.

Ann Shippy, MD

Strategy.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Testing for infections and then picking the appropriate treatment. Many of the times we see these kids off the bat, they are so severe, that we’ll start antibiotics. The question is always, Well, how do you decide what you are treating? Because the treatment for tick-borne illness and mycoplasma is one thing, one group, and then the treatment for streptococci tends to be penicillin-based or cephalosporin-based antibiotics, what do you do? So actually, we designed a table of PANDAS’ initial antibiotic selection chart that we use, and we grade it based on clinical factors that might tip the balance one toward the other. For example, if they have had a penicillin-based antibiotic in the past and they got remarkably better behaviorally, that puts them in that category. If they have a history of asthma, you might think of mycoplasma, and so they might put a hash mark in the other category. Then we totaled that up, and whichever one seems more likely, we might start that class of antibiotics initially after that. But so we use a lot of herbs in our practice as well. We found that Babesia ducani cryptolapis, which is an herbal, is amazing.

It is where we used to have to use an antibiotic in an eight-over-one, which is an anti-parasitic. We are now just having to use erythromycin plus creptolepis, and getting a lot more bang for the buck does not taste great, so you have to work kids up to it. But cryptolepis has just been a changing thing for us in our practice. But treating the infection is more toxic.

Ann Shippy, MD

I just love how you are plowing new ground with us. just your brilliant mind and your big heart. You are solving some great problems. just hard out there in other ways. I just have to interrupt you to say, Hey, this is amazing.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Well, it is what is enjoyable. It is an investigation. It is just your practice. It is medical detective work. It tends to stimulate your brain. Unfortunately. It also makes me sometimes lay in bed at night and I will awaken; I know exactly what Sally has, and I will run in the other room and write a note so I do not forget it. By the time the morning comes and those little bits of things, I do find time to relax and have downtime. But toxin-wise, by far and away the most common toxin that we see in these kids is mycotoxins from mold exposure. We have been keeping data for about two years now. There are probably 200 children’s data in there over the last two years; 100% have been positive for urine mycotoxins, and the vast majority of those

Ann Shippy, MD

100%

Scott Antoine, DO, FACEP, ABOIM, IFMCP

100% of the 200 or so children that we have tested

Ann Shippy, MD

It makes sense. based on what we know about mycotoxins and how they cause that immune dysregulation.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Absolutely. I think our theory, and I just wrote it as a section in a book I am composing on PANS and PANDAS, is based on the experimental literature and also on what we have seen in our practice. Our theory is that the initial tipping point is immune dysregulation. Because the mycotoxins cause defects in cell-mediated immunity, they affect bone marrow antibody production. They also block detox pathways that other toxins get out of. They are a poison that poisons you further by making other poisons poison you.

Ann Shippy, MD

Blocks that escape routes for the other time toxins.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

That’s exactly. That immune dysregulation seems to be where it starts. We make a timeline for our patients, as a lot of folks do. As I am going through it, I will say, When did the symptoms start? then I will say, When did you move into your house? I will say, Well, a year earlier, I will say, Okay, let us talk about that later. Let us keep going. But with that toxin exposure, I have also seen children with elevated heavy metal levels. We’ve seen some children in the atrazine belt here in Indiana. We have seen some children who grew up on a farm. They were exposed to lots of chemicals, and I feel that was an area of immune dysregulation for them. finding and removing toxins through all the things that you would do well if you owned binders, moving someone out of that environment, remediating a home, all those things. I am sure you guys will be talking about a bunch during the summit, giving people that great thing now: immune deregulation. Find and treat infections fine, remove toxins, and fix immune dysregulation.

Well, now what? How do you fix the dysregulation? There are several tiers to that. The first and most common thing that we’ll start with is low-dose naltrexone. Low-dose naltrexone is a drug. It is made at a compounding pharmacy. What we know low-dose naltrexone does is release natural endorphins, which help with pain. A lot of these children will have joint pain, muscle pain, or something called enthesitis, which is an arthritis condition. To help with pain, it has also been shown to modulate behavior quite well. There are some studies with autistic children with low doses of naltrexone that are beneficial, and it also tends to, if you can imagine, if there is autoimmunity, it tends to bring that level down. If there is decreased immunity, it tends to bring that up. Bingo! You’ve got it. You’ve got the thing that regulates the immune system. Now, not everyone responds to low-dose naltrexone. Sometimes we give it at night because it tends to chill people out. The night is a hard time for kids with PANS and PANDAS but sometimes it stimulates them or it will give them some night terrors or things either have to move it to the morning or reduce the dose.

Other things you can use for immunity regulation include the ultimate immunity regulator, IVIG. But not everybody needs that. But IVIG is the ultimate immunity regulator, in between our steroids, Prednisone. Steroids are not my favorites. I give them sometimes if I have been treating a child for a while and I am trying to make a move, play that chess game, and figure out what the best next step is. Usually, if I am trying to deal with inflammation, I will use non-steroidal medications like ibuprofen, naproxen, or things like that. But steroids have indications. My concern with steroids is that you cannot be on them long-term. It is bad for your adrenal glands; it is bad for your cortisol, your stress hormone. It is also bad for your bones; it eats up your stomach lining. Short courses are probably okay, although, as I will tell you, it is probably 30 or 40% of the kids. We use steroids and get worse because of the steroids. They get aggressive, or they will be up all night and unable to sleep, even if they take it in the morning. Not my favorite or something I commonly use. Occasionally, it will find its way into the armamentarium.

Infections, toxins, and immune dysregulation. The last thing we work on is neurologic loops for OCD. The most effective treatment for OCD in children worldwide, no matter what you read, is exposure, response, and prevention. That is a type of cognitive-behavioral therapy. It is a type of therapy where children with OCD are exposed to a stimulant, something that may bother them, in a supportive environment and then allowed to sit in discomfort without performing the ritual. Then, over time, what that does is weaken the ritual. If you had a superstition about something and you kept doing it until the superstition went away because you knew that it just did not have any power over you, your lucky, penny. You left it at home. You still had a great day, penny was not so lucky.

Ann Shippy, MD

Do you do this CBT therapy in your office, or do you work with a psychologist? Or how do you generally?

Scott Antoine, DO, FACEP, ABOIM, IFMCP

We have several. Yes, we have several psychologists in the area. One tip for anybody who might be watching, or a tip you can give your friends, is that there is a great online OCD program that does exposure response. It is called Their method called NOCD, but treatmyOCD.com is the website, and a lot of our children have found benefits because they do it via Zoom in your home, so you do not have to take this child who is got these behavioral issues or might have fears of contamination out of that environment. You can do it from the comfort of your own home.

Ann Shippy, MD

It’s nice to know they have that now.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

We have something we call the point system. I did not invent it. They used it with my daughter when she did a partial outpatient hospitalization program before she got IVIG in Chicago. She did a partial outpatient program. The point system is pretty interesting. It is a form of exposure or response, traditionally an exposure-response. If you were phobic about spiders, I would sit you in a chair and show you a picture of a spider, and you might feel a little uneasy about that. Then, throughout treatment, I might eventually bring a spider into a box. Then ultimately, we wanted you to be able to have the spider next to you, maybe, or even touch the spider, whatever. But to get over phobic behavior takes a long time, and it is uncomfortable while you are doing it. You have to take tiny steps, and with each step you have to say, Okay, what is your stress level? On the personal, say it is an eight, it is an eight. Then you say, Okay, let us just sit here for a minute. You keep asking them, and eventually, they start saying, Okay, it is a two; I am better. It is a one. Now I feel okay. then you wear that, you wear the OCD down over some time, and then it tends to go away.

The problem is that it is pretty uncomfortable. Children do not understand it. They do not do well with it. We have a modification of that that we learned in Chicago. I have a video that I send to all the parents, which is called the Point System. You make points for behaviors that they are doing that you want. A lot of the behaviors you would be doing would be exposures. Let us say you have a child who is washing their hands ten times a day. You are all tapped, and you want to get that and work on that behavior. What you would do is say to them, Okay, the parent will sit down with them and say, Okay, you are going to get 20 points if you do not wash your hands for four hours. You are going to get ten points if you do not wash your hands for two hours. You are only going to get five points if you wait an hour to wash your hands. Then what you do is make a separate list of things that the child has to use points to buy. I tell the parent that any pleasurable activity has to be on that list.

For example, it might cost them 20 points to watch TV for an hour. It might cost them 20 points to be able to go outside on their bike, whatever it is. All of those behaviors and what they do take the parent out of the adversary role, and the parent ends up being the coach and saying to them, All, I want to see you get these points. I want to see you able to go outside and play with your friends. Let us work on this. You only have 20 more minutes. Let us wait to wash your hands for 20 minutes. what happens? It is very interesting. If I sat in that same scenario and said to you, Okay, you are phobic about spiders, we want to desensitize you to exposure, response, prevention, therapy, and ERP. I could do it. Just keep exposing yourself to the spider until you can live with it, and then maybe get okay and not be petrified. But imagine if I said to you, All, I am going to take this spider; I am going to put it in your lap. You’d say, No. You are not going to do that because you would panic and run out the door.

If I said, Okay, I will give you ten bucks, you would say, No, I had to start upping the ante, but I had to get to some number. Maybe it would be $1,000,000, or maybe it would be $5 million. At which point, a little switch would go off in your mind, and you would say, I will try it, and then you would do it and you would get your money. Almost immediately after that, what you would say is, Can I do it again for another $10 million? What had happened at that point was a fundamental change that occurred in your brain that you have been associated with. The thing I thought was so scary was not, and it gave me this enormous benefit, this reward. That is a great way to do exposure responses with children.

We have a video. We give our patients their parents and show them how to do that. We have had remarkable success with that, where talk therapy has not helped or when they have had a militaristic exposure response. I am never going back there again. But it was a technique they used with my daughter when she was in treatment that was remarkably successful. She would not touch the floor. She felt the floor was contaminated. She would not touch her phone; she would not do anything. She would do anything to end up not being on the floor, wherever we were. The first day she was in treatment at the treatment center, they found that she was an athlete and that she was super competitive.

She came into the room, and two of the male therapists got down on the floor and started doing pushups. She said, What are you doing? They said, We are doing pushups. She said I can do a lot of pushups. They said You cannot do pushups. You are a girl. They just kept doing pushups. After about two or three minutes, she got down and did pushups and legit beat these 20-year-old kids. She would love it, she was a ninja warrior. But she is in such great shape. She now plays Division I soccer for our local college, and so she beat them, and then a few days later, they did the same thing. She came in there doing sit-ups on the floor.

This happened, and she beat them several times. Ultimately, they sat down in the group and said something along the lines of, Well, Emma, we are going to have you talk in a minute. But I just want to point out to everybody that Emma’s not afraid of the ground anymore. She just looked at them, and they said, The push-ups, the sit-up thing—that is all it is over. It is in your past. Then they just went on, nonchalantly talking about things. that is cemented in her brain. Then she thought, Well, I guess I was wrong about the ground, and it took it away.

Ann Shippy, MD

Beautiful.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

That is how it is, and I think ERP is great. If you look at the studies on kids, it is the antidepressant SSRI. These are not as effective. If you have someone who’s on an SSRI, about 40 to 60% of people do not get relief from OCD with an SSRI; sometimes they work. Absolutely. I have seen a few cases where SSRIs have made kids start eating again. If I have a severely food-restricted child, I will order IVIG and almost always start some, probably some Prozac or something similar to that, because I have seen a few kids that just turned the switch and have started eating. I am a firm believer in any port in a storm. You do what you have to do, and then you can always taper the person off later. But so that is the surviving.

Ann Shippy, MD

You have to get them eating.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Absolutely.

Ann Shippy, MD

Doing, or at least doing the basics. What else do you do to help with the neuro loops?

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Some exciting things happened just last year. I started investigating neurolinguistic programming and hypnosis. In NLP, neurolinguistic programming was developed in the seventies. It is a system. It uses linguistics; it uses the way we talk to ourselves and the way we talk to others; and it uses the message—the messages that we tell ourselves, which a lot of times are not real or are not reality. It is almost like we help people adjust the lens with which they view the world. NLP helps remove phobias almost instantly, within 10 minutes. That is the party trick that has been NLP. Neurolinguistic programming can help a lot of these kids reframe the situation that is going on, and it can help them. Sometimes what I will do is bring the children in, and they will say, There is nothing wrong with me. This is what our daughter said to their parents. I will start listing what is going on. The kids are just sitting there looking at them, and I will say, Are they telling the truth? They will say no. I will say, Oh, you are a liar.

I brought you in here today. Your parents are liars. Well, I am going to have to talk with them. I do not believe when people lie to me. I appreciate you letting me know. Almost always, that is enough to flip something, and then I will look back at them and say, Or are they saying something? That’s the truth. Are they just exaggerating? Yes. Okay.  What they are saying is the truth. Yes.  There are little bits of hypnotic language. During the mystic program, you can, but hypnosis has been a big surprise to me. I started working with hypnosis to help some of our patients with chronic pain, patients who could not sleep, or who had severe anxiety. It was super effective. Then I started doing it with some of these children, I had one particular girl who had severe contamination and OCD, and I had done everything to get the house remediated. We gave her binders to remove mold. We treated infections—everything you can think of. I had her on low-dose naltrexone. The only thing I had not done was IVIG, and I think I ordered that, and I told her, Mom, bring her in; I want to do something with her.

So I did a hypnosis session with her, and she walked out of the office without contamination. I have never seen anything like that. same girl; two weeks later, she also had selective mutism and had not talked to anybody for a few years. Two weeks later, I brought her back in, and I told her mom, I just do not know that this is going to work, so I am not going to charge you, but I need you to bring her back in. I did hypnosis, and she started talking to me that very same day. I nearly wept. I was just overcome by that so that the ability and hypnosis would work. I think Erikson celebrated the fact that Milton Erikson, one of the most famous hypnotists, said, You have boundless capabilities; you just do not know it. Hypnosis helps you understand what capabilities you have. A lot of times in hypnosis, what I talk about is taking a capability. You had some other time in your life and are transferring it to now.

People will tell themselves a lot of I cannot messages. I could never go to college. I could never do that. I will say, under hypnosis, I will talk to them about a journey of remembering when you learned to walk and it was impossible and you were imbalanced and you were top heavy. You had a big melon on your head and fell over; your feet were flat; you did not have balance; your cerebellum wasn’t developed; and all those things now allow you to walk. But now you are an expert at walking. You could walk with a blindfold on. You can hop over things, ride a bike, jump, or do a cartwheel. That is incredible. That is so much harder than going to college. Bringing those capabilities over a lot of times you can bring those capabilities over, and then people will when they come out of trance. All hypnosis is self-hypnosis. There is no spell I put on people.

Ann Shippy, MD

I was going to just ask you to leave, or give a little bit because I think it is a lot for people; it sounds scary.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

It sounds weird; we have all-stage hypnosis, where people have hypnotized someone to make them act like a chicken. then, and I am not saying there is no hypnosis going on there, but for the folks that get up on stage to do stage hypnosis, there is a specific process by which they are selected. There are books written about how to pick a good candidate. Those are the folks that you have known throughout your life who would sing loud karaoke or get up and dance on a table in college when they were drunk. Those are exhibitionist people. They want to be up on stage. They want to see something funny happen. They have seen hypnosis before where people someone’s asleep and they suddenly go out. They have seen those things. They have had expectations.

I am not saying there is no hypnosis going on in this. I think there is some of that. But hypnosis is just a state in which you are suggestible. You have been in a trance multiple times. When you daydream, you are in a trance when you are driving down the highway, and you are just thinking about nonsense, and you miss your exit. You are in a trance. When you are in a good book and someone’s calling your name, Most people walk around now with their phones in a trance. You are talking, and they do not hear you. They walk into a pool, they fall into a lake, and they have a car crash because they are texting. That is all trance.

What we do in hypnosis is just get people super relaxed. There are numerous approaches. Think about your hair; think about your body. There’s confusion and multiple different types of inductions. Once people are super relaxed, we just talk to them about their goals ahead of time. Then we talk about that and tell them stories. We usually link things together and help them almost 100% of the time when they bring them back up. They have never been asleep, but we bring them back up, and they almost always remember everything that was said during hypnosis. There’s no way for me to hypnotize you to go rob a bank and bring me the money. It is not mind control people will think about, but it is a very pleasant experience. It has been shown to work for pain.

Ann Shippy, MD

I have also heard some stories about that. I used hypnosis to be able to do natural childbirth, and then after that, it was so good that when I had to have some dental work, I just used the same techniques because I did not like the way the lidocaine shots. It is amazing for pain.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Well written, and you mentioned childbirth. They have also shown shorter times in the hospital for women who have used it after childbirth or during childbirth, and they have used it in pediatric emergency rooms where they could not sedate children, to set form fractures, and had a good experience with that. That is all in the literature. It is fascinating.

Ann Shippy, MD

You learn to do the hypnosis.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

I took a few certification courses. I am also a member of the American Society for Clinical Hypnosis. I read a lot, a lot of trial and error, and I took several hypnosis and several neurolinguistic programming courses, both in-person and online, and ultimately ended up getting certified in both and now have practiced both. For whatever reason, it is just one of the most fulfilling things I do because maybe I always wanted to be a magician because when you do it, it looks like magic, but it is the person fixing it. I guess I do that part of it too, because I do not want to think, and I want to get out of the way so people can help themselves. That is what hypnosis is about.

Ann Shippy, MD

It puts things in these neurological trenches: the way we think about things, how we are thinking about things, what we are thinking about, and the way we describe them. I love your stories about working with these kids because it feels like you are helping them. Just very quickly get out of the trench that they are in and how they are thinking, and then get it in a new groove.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Absolutely. It is about making a difference, about changing something about your environment. We have had some severely affected children, one of whom I can think of in our practice, where the parents ultimately took them to a well-controlled wilderness therapy experience with multiple counselors. But it was in a very rural setting where the children had to get up and do chores. It was such a total difference—no cell phone, no media, and nothing else. It was life-saving for this child that we tried everything else for. One of the things I will tell parents a lot of times about themselves or their children is that if people are having a hard time sleeping in one spot, I will tell them to go to another bedroom and sleep or go to sleep on the couch. Sometimes changing that little something about it changes the pattern in your brain, and it is called hypnosis. We call it a pattern interrupt. It is what happens when someone pickpockets you. They bump into you and get you jarred for a minute. In that second that you are jarred, that is the most vulnerable time to not being able to be in control of your senses or your environment.

That is a great time to take someone’s wallet. It is a pattern interrupt. A lot of times, I will also have parents with OCD. I will have parents use a pattern interrupt for OCD at home. If you have a child who is continually asking for reassurance or if my hands are clean, are my hands clean? Parents will instinctively keep answering Yes, they are clean. Or I get frustrated. I used to get with my daughter and be. I am not answering you. Stop asking me questions. You are driving me crazy. What is the matter with you? Of course, your hands are clean, and so are your parents. But the problem is that in both of those instances if you answer them, it will seem palatable to them. But it strengthens the OCD. If you say I will not answer you, you are leaving them in a super-anxious position. They have nowhere to go. Their anxiety builds, and then they lash out, screaming, and it gets worse. I will have my parents do a simple pattern of interrupts for reassurance. OCD, which a lot of these kids have, is if a child is continually asking you, Are my hands clean? Do I need to wash my hands? Parents say The one thing I admire about you is the fact that you are always concerned with your health. A lot of children your age are not. I admire that. That is awesome. You have made a difference, but they have taken you out of the loop. They are no longer in the loop. They are in this other place, and you have complimented them and left them with this positive feeling. You can do it in a way that is not frustrating.

You’re going in a completely different direction or not saying the same thing every time. The other thing you can do, in a big pattern or two, is tell parents to say, Oh, I think I left the dishwasher on or something, and get up and move to another room. Just that setting, because any of us, if we were in the midst of an OCD flare, anxiety, or anything else if the house suddenly caught fire, we wouldn’t have any trouble shutting that down and moving outside for our safety. There is something about a pattern. Interrupt that moves your cheese and gets you a little bit out of that state. A lot of times, with these kids, it will do that.

Ann Shippy, MD

As you were talking about it, I was thinking about the loop being one of those roundabouts. Things like finding an exit with the dishwasher, the complement, or whatever—that is such a great, great approach. I will help with that. I know you are coming up on the completion of this labor of love that you have with your new book on this topic that is going to be coming out. I would love it if you just told the audience a little bit about what that book is going to be because I know some people do want to have access to the textbook level of information on this. I saw a few just talk about that a little bit.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

I started about a year and a half ago writing a book, and my idea was to write a book for parents based on the experiences I had with these children of PANS and PANDAS. I got several months into it, and in one of these late-night moments, I sat up in bed and said, This is all wrong. This is not the audience. A lot of what I do is geared toward parents. In every blog on my website, speaking engagements are often geared toward parent groups. I make videos and send them to parents. We have a whole online PANS and PANDAS program that we made a few years ago that is in the process of being revamped. But we tell all of our parents that it is multiple modules with worksheets and whatever. But I thought to myself, I cannot think of a single parent who has ever come to my office with their child.

That said, I just do not know what is wrong with my child or what they all come in and say. No one will listen to me. I looked this all up. I think my child has PANS and PANDAS. They are right every time. As I said, the link here is that we have to help our fellow physicians understand this condition. First of all, understand it from an evidence-based standpoint. The book’s got about 1200 references, and I decided to write it as a textbook. I made the thing that I would have wanted back when I started because I needed someone to take me through it and say, Okay, what works, what tests will I be doing, when do I do IVIG, which antibiotic do I pick, how do I know, and how long do I use it?

How do herbs work? Does that thing make any sense? The idea was that I also did not write anything adversarial because physicians operate based on how they were trained. I think we are all well-trained. I think physicians in this country do a fantastic job, subject to your toolbox and how big your toolboxes are. My goal was to make this textbook available to physicians as a tool to put in their toolboxes so that they can use it, certainly, anybody can buy the book, but it is written for a physician audience. It is written; there is a lot of science in it, and there are a lot of helpful tips and things in it as well. But it will help a lot of times I get calls from parents who say their child’s too sick to travel, and we legally have to see people at least once in the office to examine them.

A good physical exam is a huge part of PANS and PANDAS, and so it is hard. If parents see that their child has such severe OCD, they cannot travel to you by airplane, by car, or by anything. I have had people call from foreign countries and say, No one where I live knows anything about this. I figured, This is the audience. We’ve got to produce something that allows physicians to learn about this and to look at the science behind it, behind mold, and Lyme. Is Lyme a big deal? Is mold a big deal? They are. Here are all the references. Here are 300 references on mold. Here are 150 references online. Bartonella Babesia to help you understand things so that you look at this and do not think. Well, that is all. That sounds weird to me.

Ann Shippy, MD

Here’s the overwhelm because they do not know. They act,

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Where do you go?

Ann Shippy, MD

We are not trained to treat it. I can see patients buying your book, taking it to their doctors, and saying, This is what my child has. Then, here’s what we need to do to help.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

I think that would be one thing I had thought of. I would take a step further and say, Take it to your doctor and tell your doctor that you do not have to accept it if you do not want to. But if you take it and use it, you have to pay me back. I would accept that if I were a physician. I think I hate to have the patients buy that book for the physicians, but I think that is the thing. also just to have something that makes sense, that is written in a language from doctors or doctors to help that information trickle down to the rest of the health care system and help doctors get IVIG approved. Here’s the data. Put this into a letter, and you cannot argue with it.

Ann Shippy, MD

That is great. Well, before we conclude, is there anything else you would like the audience to hear today? Then, of course, I would love for you to share your website, where I can find you a private online program where you have all these tools that will help people get even more information.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Absolutely. I think what I would say is that there is always hope, which is my mantra for these patients when they come in, and my message to physicians is to be curious. I think that that is something that you and I have both shared in our clinical practice. It is just the concept that when people present with a complaint, even if part of their story is anxiety, that anxiety a lot of times because no one’s believed them or you have been told you just need this medication when it is something entirely different. I do not fault the physicians; I do not fault anything. It is the system. But being curious is what I tell physicians, and having hope is what I tell patients. You can find us. Our website is fullyfunctional.com. Our practice is the Center for Fully Functional Health, but on our website, you will find contact details. You can call our office and talk to anyone there about our PANS and PANDAS programs. We have that, which we have made available to people as well. The book will be on the website eventually. I do not have any preorder details yet, but it’ll also be in bookstores and on Amazon. On social media, we are the Pandasdocs on both Facebook and Instagram; you can find us there as well.

Ann Shippy, MD

Thank you so much, Scott. I just love how you are bringing all this information together and helping patients and their families. It is such a great journey that you are on. I am so glad that your daughter is doing so well.

Scott Antoine, DO, FACEP, ABOIM, IFMCP

Thank you. I appreciate it as well. I am so thankful that this summit is coming. It is too long. It should have happened years ago. The fact that you are bringing it on and have all these folks on who are just idols of fun makes me look up to these folks. I am so happy to hear all of the talks and have access. Nice. We think that is fantastic.

Ann Shippy, MD

Thank you so much. Good. We will talk to you soon.