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Autism Parenting Secrets
The Brain Requires INDEPENDENT Thinking
00:46:01
Dr. John Gaitanis joins the show to discuss why many children may be misunderstood neurologically and why broad diagnostic labels often fail to explain what is really happening in the brain. He explains how inflammation, regression, biomarkers, cerebral folate deficiency, and individualized medicine are reshaping the future of pediatric neurology. The secret this week is… The Brain Requires INDEPENDENT Thinking
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- [00:00]
Dr. John Gitanis
If I was brought to the emergency room with a caregiver and the caregiver said that he, prior to Tuesday or whatever, I was speaking fine, but suddenly can no longer speak, lost all words, not communicating. Let's think, what would an emergency room physician do in my case as an adult with that symptom? I would get an MRI of the brain. I would get EEGs, maybe a lumbar puncture. I would get a very, very thorough diagnostic workup to try to find out what the cause is for having lost language skills. And then let's look at what happens to a two year old. If a two year old comes to any physician and says he was speaking, he was using short sentences, he was very social and interactive. Suddenly X, Y or Z happened. Like usually there's some event that occurred. It could be an inflammatory trigger. It could be, I've had kids who've had sometimes regression after surgery. There are other things that might relate, but some event occurs, but typically an inflammatory trigger. High fever, became extremely irritable, lost all language. The typical response is, well, that just happens. Or that's just autism.
- [01:00]
Len (Host of Autism Parenting Secrets)
If you're a parent of a child with autism, you are being called to rise with love, courage and clarity. This journey isn't easy and most parents aren't equipped, but you can be. This podcast is your invitation to rise higher because how you navigate matters. I'm Len and this is Autism Parenting Secrets, where you become the parent your child needs now.
- [01:26]
Podcast Host/Interviewer
Hello and welcome. Many children are struggling with issues that go far beyond behavior. And too often parents are given labels and symptom management instead of deeper answers about what may be actually happening in the brain and the body. Today's guest is Dr. John Gitanis. He is a board certified pediatric neurologist, co founder and chief medical officer at MeadowHealth and part of the leadership team at MAPS, the medical academy of Pediatrics and Special Needs. He spent decades helping families look deeper into the biology driving neurological symptoms in children. And honestly, a pediatric neurologist with real curiosity. He is a very rare breed. So this conversation is going to focus on why the same diagnosis is can represent very different brain conditions and how that changes treatment, testing and outcomes. The secret this week is the brain requires independent thinking. Dr. Catanis, welcome to Autism Parenting Secrets.
- [02:28]
Dr. John Gitanis
Thanks. Happy to be here.
- [02:29]
Podcast Host/Interviewer
Super. Well, hey, I know the MAPS conference was about a month ago. You were presenting there for the practitioners. You also gave a presentation for parents who are in attendance for Parent Day. So I know that presentation. I thought you hit so many key Concepts. But I guess the kind of key question I'd like to ask you is if you had the bottom line, you know, what's one thing that parents misunderstand about the brain and these diagnoses that they may have received for their child, what would it be?
- [02:59]
Dr. John Gitanis
Actually, let me step back for one sec, too, because maps, just to explain, for any who don't know, MAPS is the Medical Academy of Pediatrics and Special Needs. And it's a place where clinicians who really want to understand root cause medicine can go to learn that sort of approach. And so when we think about. So the question was like, what could I say to parents who might misunderstand? It's actually probably better to speak to the clinicians who might misunderstand than the parents. Because in truth, the parents are often the ones coming to me with a really very good or very accurate understanding of what their child's health status is. And many times the parents are asking the right questions. And a lot of those questions are about that root cause component. It may be more the clinicians who don't get to the root cause piece. That's obviously the concern. And if we don't know root cause medicine, as a clinician, you can imagine how easy it is to be led astray down the wrong pathway of either treatment or diagnostic.
- [04:00]
Podcast Host/Interviewer
No, that makes sense. And on this episode, we've had so many of the MAPS leadership members who have been talking about what the MAPS organization does. And yes, having that right medical practitioner on your team is incredibly important. And again, there's no question parents, especially now, are much more informed. But there still may be, you know, maybe too much of a focus on the symptoms and perhaps not enough attention really, to revealing with curiosity what those root causes may be that are resulting in their child presenting the way they are. Which is why the guidance from the right people with the right perspective is so incredibly important.
- [04:40]
Dr. John Gitanis
I'll give you an example. There are a lot of examples where. Where this root cause issue becomes critical. The one that comes to mind first is the issue of developmental regression. So as many as 40% or so of kids with history of autism had a developmental regression. Let's compare for a second. What happens in a child versus an adult with the same concern. So if I was brought to the emergency room with a caregiver, and the caregiver said that he, prior to Tuesday or whatever, I was speaking fine, but it suddenly can no longer speak, Lost all words, and I'm not communicating. Let's think, what would an emergency room physician do in My case as an adult with that symptom, I would get an MRI of the brain, I would get egs, maybe a lumbar puncture. I would get a very, very thorough diagnostic workup to try to find out what the cause is for having lost language skills. And then let's look at what happens to a two year old. If a two year old comes to any physician and says, you know, he was speaking, he was using short sentences, he was very social and interactive. Suddenly X, Y or Z happened. Like usually there's some event that occurred. It could be an inflammatory trigger, it could be, I've had kids who've had sometimes regression after surgery. There are other things that might relate. Some event occurs, but typically an inflammatory trigger. High fever, became extremely irritable, lost all language. The typical response is, well, that just happens, or that's just autism, or they don't have the autism diagnosis, but then they wait another six months or a year or something before that even comes about. But there had been no work up in the interim, like none. And you're talking about a child who has the rest of their lives ahead of them. And yet we've not done anything to really get to the root cause or that understanding of what's actually happening to that child. So that's an extreme example, but that happens every day.
- [06:26]
Podcast Host/Interviewer
It happens every day. It happened in my own family with my son. And again, that's why a lot of times the guidance you might get in that situation is I'll just give it time, give it time, don't worry about it, don't obsess over it. And meanwhile, that delay can be really, really important in terms of what you might be able to do to figure out what's causing and in that case regression, particularly with respect to speech. And I know you would echo the fact that what might have been behind my son's regression and the lack of speech, it's going to be wildly different than other. Like there's no one cause. It's all more complex in terms of what a child may have experienced with those stressors, triggers, et cetera. And so there's no one answer for that. Every child's so incredibly unique, which is where the precision of the carer really becomes so important.
- [07:18]
Dr. John Gitanis
Yeah, that's correct. I mean, I could tell you what it wasn't, it wasn't because he was a boy. Right, but that's often said. Right. And that's not a, you know, and again, when you, when you, when we have a conversation about it, it sounds absolutely ridiculous. That somebody might say, well, he's a boy, so give him time. If I again, if I went to the emergency room and I couldn't speak suddenly, can you imagine a doctor saying well, he's a boy. So this happens, that would be blatant malpractice. So why is it different in a 2 year old? I mean that's a, you know, it's just a very reasonable question. I'm just asking that question. Why should it be different? Of course we should do the workup. Of course we get to the root cause. And this is where I'm going to come back to the parent piece is the parent is actually the like in terms of distinguishing what was different from your son, say to, you know, a hundred other kids I might see who had a regression. I have to rely heavily on the parent's judgment there because the parent was the one who generally has a gut instinct about some event or some occurrence or some associated symptoms. That might be my clue. And you know, when a parent says, and this is a pretty common one, that, you know, there was a fever at a 104, there was extreme crying or irritability and then he was quiet like that tells you, okay, there was some major event, some major inflammatory trigger that might have led to that. And that might be an important clue or if it was say a post surgical response or whatever the stressor was. I can't do that without the parent's judgment because that judgment is really how you get to that right answer for that child. And why I want to know that. Why we need that root cause is that that child who was susceptible at 2 could still be susceptible at 12. And it may be the same trigger or a similar type of trigger that we have to be careful for. So if I don't know what led to it the first time, how am I going to figure out how to prevent it the second time? And that second time isn't necessarily, it's not the same regression, right? It's not necessarily the language or loss of eye contact. That second time might be something like a pans flare or the onset of seizures at a later age. So I need to really understand who's the child I have to protect, who's a child who might be at risk. And I can't do that without really detailed history and without some evaluation.
- [09:32]
Podcast Host/Interviewer
What you're describing is music to my ears because that's exactly what I know as a parent I would love to have with a neurologist. And honestly, I know that wasn't my wife, Cass And I. That wasn't our experience. Early on, we were living in. In Manhattan and saw who we thought was the top pediatric neurologist who really wasn't interested in those other facts that you mentioned that are really key clues. And he even kind of just said, well, at least he got a smart one is what he said about our son. And again, not saying anything negative about him. Very, very nice person, very credentialed. But that's where, in terms of a person on your team, a parent, a medical practitioner, a neurologist, a pediatrician, there's so many qualities to look for and who would be a fit. And that's where, again, I think you still are kind of a rare breed, where you have a much more expansive curiosity about what's going on with the child that might give you clues as to what care might be appropriate for them.
- [10:34]
Dr. John Gitanis
That's very kind. But I think, too, I'm thinking back to what leads to that difference of thinking, because it's. I don't think it's so much a failure of your doctor or anybody else's doctor as much as it is a failure of the training and education. And we grow up, and I grew up in a system where. And I'll tell you the feedback I heard as a trainee, well, first of all, and this is true even today, but the amount of education you get towards, say, autism specifically is almost nil. You know, there is no requirement to train in autism as a medical student. You may do some developmental pediatrics as a medical student as part of your pediatrics rotation, but it's not always a requirement. And then even as a pediatrician now, I graduated medical school 30 years ago this year when I was an intern, I didn't see autism. I mean, I just didn't see it when I was a pediatric resident, I didn't see it. I had a general pediatric clinic. It just wasn't something that came up, frankly. So I think the world has changed. But what was happening when I was a neurologist, now we're pushing into 2000, 2001, and as it kind of got to those years, there was something happening. I was studying a lot of kids with regression at that stage, and that was, I think, new to a lot of us. And when I asked that question, what's going on? And I would ask this of, like, senior colleagues, they would say, and I'm not making up, they would say, well, that just happens in autism, or that's just autism, or that's just part of it. And that was it. And you Know, I think that's not a very satisfactory answer. But many of us sort of accept that and have continued to accept that. And it goes along with a couple of other things that I have trouble accepting. So we have the discussion that there's not a true rise in incidence. That's something that's often passed down, that it's purely genetic. And even if you can't find that gene, you know, cause only 20 or 25% of patients can actually find a gene with the best test we have, leaving 80% without. But many will still say, well, it might be a combination of many genes and we'll eventually figure it out. Imagine if you don't think it's rising and you think it's purely genetic. There's sort of a fatalistic approach then that one might take. But I think the third and most destructive, I'm going to say these are fallacies or myths or inaccuracies that are part of this standard medical training. The most destructive of those is the fact that unfortunately, many clinicians think this is intellectual disability. And many clinicians believe the number that was hung around that kid's neck at age 4, 5, 6 when they had their first neuropsych test. And so you might have a kid who has an IQ that's listed as 40. And that means that you're going to be dependent for the rest of your life, that you really have very limited intellectual ability. And you know, when you follow kids over a couple of decades and you see them grow up, and then you start to realize this kid's not just smart, like this kid's really smart, and somebody somewhere gave this kid an IQ of 30. But absolutely there's nothing further from the truth. You start to really rethink how you practice completely. Because if you know that that kid is smart all along and you recognize that that kid was understanding all along, suddenly every single decision you made in that child's life would have been very, very different if you could have turned the clock back in the medical field. I think the most important of those decisions is this decision to put kids on a lot of psychiatric meds, particularly things like antipsychotics that might blunt cognition. You're not going to do that to a really smart kid. You're really going to fight hard to avoid blunting their personality or cognition. That's important. But the other thing too is you're not going to have a cocomelon curriculum through the 12th grade. And they're not specifically teaching cocomelon. But I mean, this is the number One complaint of the older patients, the young adults I see, is that they didn't learn anything in school at all. They just did the same stuff again and again and again. And when they became frustrated or upset by this constant repetition and learning essentially nothing, they might get a little frustrated, express it in a behavioral way, and then they just would then be put into a further box because of the behavioral, which. It just led to a bad positive feedback cycle, like a downward spiral. And all that we needed to do was really talk to the kid, like anyone, teach them, change up the topics, stimulate them intellectually, and just acknowledge that they're there, that they're, you know, that they have. You know, that they basically. That they have their own mind, their own thoughts, and that they have their own interests and just acknowledge them like any person. And unfortunately, that hasn't always happened. And so I think it reminds me a little of the movie One Flew Over Cuckoo's Nest. But if you remember, in the movie, Jack Nicholson did not go into the psych ward as a crazy person, but he sort of left the psych ward as a crazy person. So if you put me into any kind of institution where I'm being talked to as if I don't understand, ignored or limited, and then you're putting me on meds on top of it to limit me further, I don't know how I would leave that. Those 12 years or those 15 years of that experience. I think I would leave with a lot of bitterness and I just pray I would leave intact. And I know I sound. I sound hyperbolic in all this, and I don't mean to. I don't mean to sound as if I'm exaggerating this, because I think you could hopefully support what I'm saying as a real concern, but this is a real concern I have, is that people, that their autonomy, their humanity is somewhat being stripped through everything that we're putting them through through childhood into early adulthood.
- [16:23]
Podcast Host/Interviewer
Yeah, no, your words are extremely powerful. And I'm nodding in agreement only because I don't think parents really get informed. They're not made aware how early on what they say to their child, how they are to their child, and particularly the beliefs they have about their child really, really matter. So I think two concepts come up. I know one, we had a therapist who was working with our son after he regressed, wasn't verbal, gave no indication he understood anything that was going on. And even this therapist would say, hey, don't say anything in front of him that you wouldn't want him to Remember? And I remember she said that to my wife and I, and we took that to heart. And thankfully we did, because his speech emerged. He remembers everything from then and can play back what we said in certain situations. So we know that firsthand to be true. And then, even on this podcast, I know Elizabeth Bosler has been on it, along with a lot of the different leaders within the spelling community. And I know Elizabeth talks about the concept of presuming competence, and that may sound like just a nice catchphrase, but it's so critically important, your posture with your child, to presume they know more of what they're letting on, that they know and that they're taking everything in, because they really are.
- [17:39]
Dr. John Gitanis
So that's a big difference right there. In terms of the MAPS approach and mindset and the clinicians in the room, I would say all the MEPS clinicians, they know about spelling, they've worked with spellers, they've seen it directly. Once you see it, you can't unsee it. Now, a lot of the parents always knew their kid was smart, but again, you might not have realized that they're better at writing than you are until you see it. And once you see it, you really can't unsee it. And the people in that MAPS conference, they've all seen it, and they all know that this is real. So I think you can have a group that understands just how bright and how bright the patients are and really respects their autonomy, their opinion, and their direct input. And once you start from that foundation, it changes everything else that you do because you really begin to do the workup differently. You begin to also really try to protect that intellect and that function in a much different level than you would if you really felt like this is a person who's truly absent.
- [18:47]
Podcast Host/Interviewer
Absolutely. Yeah. And you mentioned that these kids are usually smart. There's no question. I mean, you're from the Boston area. They're not smart. They're wicked smart. I mean, incredible, the talents that they have. And again, I wasn't able to see that in my son early on, but now do. He was diagnosed when he was 18 months. Now he's 19. I see his superpowers, I see his gifts that he's able to bring to the world. So amazing with the whole spellers movement, how so many parents are being awakened to that child in front of them, really, for the first time. So it's just such an underreported story. I think a lot of what you were sharing, though, talked about and even the title of this Episode.
- [19:27]
Dr. John Gitanis
Right.
- [19:27]
Podcast Host/Interviewer
The idea of independent thinking for parents to think independently, for practitioners who do the same. And I know in your talk back at the MAPS conference, you talked about kind of the. Not the. Not the danger, but the concern with consensus, right? How consensus is not reality. Can you expand a little bit more about that concept?
- [19:47]
Dr. John Gitanis
And sometimes, I'll admit, I readily will admit I often forget many of the things I say in Congress. I'm sure I did say something along those lines, but, I mean, I think we could think back to, like, again, my experience as a resident or a medical student where the consensus has been, for example, that spelling is. The word debunked comes up, right? So the consensus is that this is a debunked concept, that, that spelling is. Because it's an outgrowth of facilitated communication, it's completely debunked. It's really, really hard to. So that's the consensus. Okay. I'm going to say we're. It's completely a wrong consensus. I mean, we can't be any more wrong on that issue. But when you actually sit with a kid who is sitting in front of you and typing or spelling, how on earth can you deny that that that's coming from that child? I mean, you can't. There's a certain point where you can no longer deny, and yet people still do. So there are two ways that consensus perpetuates. The wrong consensus perpetuates itself to this day. And there are two ways it happens. One is the people who are the naysayers in this will refuse to even sit in that room or allow themselves to experience it. And we've seen that happen where members of a certain speech therapy organization or even teachers were invited to come and meet with spellers and yet refused to. So that's a clear decision to shield yourself of something that. That challenges your worldview. And that is, to me, whenever that occurs, that means there's something desperately wrong about that person's worldview or maybe about the person themselves. But that's when I retire, okay? If I start doing that, do me a favor, just call me up and say it's time. It's time for you to check out, because you're too old to be doing this, because you're not learning new stuff, right? So please don't let me get to that point in my life, because this is, and I'll. I'll say it this way, the other way to think of it is this spelling experience for parents who, when they first see their kid do this, and I've Had a few kids that really took off quickly. But this is magic. It's truly. We grow up and you get to a certain age and you get beaten down as a parent by a lot of things, and you sort of lose your sense of that there's magic in the world, and then your kid's a speller, and suddenly that magic comes back and. And the idea of allowing yourself not to even be in the room to experience that is just crazy to me because ultimately, we all want to root for the kids. So how do you. How could you root for the kids and not want to be there and experience that magic? It just doesn't make sense. But that's an example where consensus is wrong, and sometimes it's just because people don't want to be in the room. The other thing that happens, which is really, to me, very disheartening, is that you have a lot of people who will go online and look at a video of speller that's posted on YouTube or somewhere and just start breaking it down and criticizing every single point. And this is, like, deeply personal. I mean, this is someone's child who's up there. And these videos are really posted to help families. They're not being posted to be criticized or to tear down that child. And the people who are doing that tear down are. They're not acknowledging just how much work it took to get to that point. I mean, you know, this is. There's been a whole journey, a very emotional journey that went into getting that kid to that point. And then you're going to sit there and just be a hater and tear it down. That is a. That is another very difficult place for me to imagine being. So that's another situation where I would say, call me up and tell me to quit and just leave my life now, because I don't want to get to that point of losing hope or losing magic. But those are examples where consensus is wrong. But there's another area where I think consensus is clearly wrong, and that's the model that we approach these conditions. Because, as I mentioned at the start, there's this worldview that everything is genetic, and if it's genetic, it's sort of a fatalistic approach, right? Like, there's nothing you could really do to treat a genetic condition. It's sort of the approach we've always lived under. Nothing except for speech therapy or aba, but that's about it. Well, what if we're wrong? What if that consensus is wrong and there are actual treatable conditions that really can directly Help development and we've overlooked them. And so a good example is the. And here it's a little similar with turning your eyes or averting your eyes to the spelling. But the largest pathological study where, where we've actually done brain biopsies with people with autism. And it's a really sad, disturbing idea because it means somebody had to die to do these studies, but they die of other causes. And when their brains are looked at, inflammation. This is the VARGas study from 2007. Inflammation is the one thing that was demonstrated from pathology. So okay, so now that's not an easy study to replicate. You can't just go and do a large pathological study easily. But when you see inflammation as the core feature in the brain, and that's pretty definitive, how do you continue to beat the genetics drum as if that's the only condition? But not only that, we have how many kids have EoE, you know, eosinophilic esophagitis, how many kids have Crohn's or ulcerative colitis or other GI inflammation, arthritis, eczema, allergies to a host of things, celiac disease. You start naming all the autoimmune allergic symptoms that kids have and much, much higher frequency. And across the board, all the studies that looked at the allergies, the coexisting allergies, have shown higher rates in kids with autism. And I think it's very similar to not being in the room for the spellers. I think we're just not going there. And as a community, as a consensus, and yet that's an actionable piece of information. As a clinician, I have something I can treat there, so why would I not want to go there? A really important question. And then you add to it. So we started with the regression. You go back through the regression stories and I'd welcome any parents who'd experienced this to share their experience. But how many of those stories, when you get to them, involved fever, involved pain or this high pitched scream? I mean just story after story after story with really high level consistency. So we have pathological studies that have confirmed inflammation. We have a high percentage of kids who had a clear inflammatory condition related to their regression. And then when you march it forward, even the kids who've had this sort of pans regression when they're 12 or 13 and they have self injury or a real change in behavior many times too, that was related to inflammation, infection, allergy, so that gives us an actionable target. But if we keep averting our eyes and saying, well, this happens. It's genetic. And here's an antipsychotic for you, and I'm choosing not to treat the obvious thing that's causing it. How is that fear to the kid?
- [26:53]
Podcast Host/Interviewer
All incredibly useful questions, and I guess it gets down to human psychology. And what is somebody's primary motive? We. We want to believe that everyone wants the best for the child. What. What can help the child. But sometimes there's bigger priorities in terms of protecting the worldview and also protecting. In terms of anything that requires extra effort, because I think the guidance that you provide takes extra effort, takes wanting more dots to be able to connect them. So I think a lot of times with practitioners, perhaps they don't have enough time in a consult to do that kind of connecting. And, and especially with parents and taking actions, sometimes there's an overwhelming resistance to inconvenience and effort, and that's often where the biggest opportunities are. So just having a different mindset going in and being more open and flexible becomes really important.
- [27:49]
Dr. John Gitanis
Yeah, I think there's a lot of things that might make it difficult for physicians to turn this around. I mean, one is that we are brought into a world with a certain worldview on developmental disabilities, that it's all genetic, and that there's really not a metabolic or inflammatory or toxic exposure that relates. That is purely genetic. That's the worldview you're brought into. So you're kind of starting. Everybody sort of starts there at the ground level because that's what our educational system teaches us, and that the only treatments are really psychiatric meds and aba. That's. That's the worldview we start with. It was parents who led this other effort to kind of think differently about it. And for those of us clinicians, myself included, who were fortunate enough to actually listen to the parents, have a few really smart parents walk in the room and kind of present something that was like, wow, that's a really interesting idea. And then you follow that, and then you see the kid get better, and then you start doing that with other kids and they're getting better. That's a great experience. But why don't more of us take that? And I think that's a lot of factors. So it does require more mental effort. People are inherently a little bit lazy, and it requires a lot of brain energy to start thinking differently and challenging yourself. It requires time to do it. But there's another part, too, is you have to be fearful of the excommunication that might happen from your community. This is a real. A real concern so let's think of the Leucovorin example. So Leukovorin, we've had four double blind placebo controlled trials. And if you look at both the placebo control and the open trials, we have over 600 patients studied for leukovorin. And what we've seen are improvements in core symptoms, language, for example, speech, improved core symptoms. And it's a vitamin, it's just version of B9. So safe treatment, it's been out for 70 years. It leads to improvement in core symptoms and consistent improvement across the board. And yet, because the American Academy of Pediatrics has said we have insufficient data, most children's hospitals, quite a few around the country have said that we are not going to allow our clinicians to write for leucovorin in kids with autism. I'll tell you what is not said to us, because I've been on, you know, I've been in the academic medical center, at large institutions. I have no restrictions on the number of antipsychotics I write. And let's look at the data. Right, So I mentioned Lucrivorin. It's over 600 patients now between the open and double blended trials. Risperidone was the first antipsychotic approved and had two trials that led up to that approval. One was a eight week trial involving 101 patients, half of whom got the med, half placebo, 101 patients, eight weeks, and then there was a six month follow up with 80 patients. That's it. So you have 100 and 80 patients were studied and the primary study was over eight weeks. If you do the math today, we don't know the exact number of kids who are taking risperidone or antipsychotics today. But based on the number of kids that we have in the country with a diagnosis of autism and the percentage on antipsychotics, which is quite high, it's somewhere close to half a million kids are on antipsychotics today and they're not on it for eight weeks. The FDA approval is for eight weeks, by the way. They're not on it for eight weeks. They're on it for decades, sometimes perpetually. We have no safety data over that length of time. The safety data we have is all disconcerting. It's like type 2 diabetes, obesity, gynecomastia, movement disorders. These are real issues. So here, if I work in any major academic institution, I could, I could have your kid on two antipsychotics, an ssri, clonidine or guanfacine. On top of that, I Could have them on five or six psych meds and nobody will bat an eye. I'll get no pushback whatsoever. The major pediatric organizations will have said nothing against that use. Haven't really put any statements out about this widespread use of antipsychotics, which are basically causing a generation of obesity and type 2 diabetes in these kids and probably blunting their cognition. And so this is really, to me, this is a human rights issue. Like we, we can't continue on this path. And, and then to consider too that there hasn't been a lot of root cause medicine that went behind that decision. This is a kid who had soft injury regression. Well, how do I know I didn't use an antipsychotic because the kid had a cavity? Because I've seen that clinically, I've seen a lot of kids who have caused so many who've had abdominal pain were put on antipsychotics and all they needed was a dietary change or, you know, something to lower that inflammation in their gut and their symptoms completely improved. And so, you know, to treat somebody's abdominal pain or cavity with an antipsychotic would be considered malpractice in anybody else except in the non speaker. In the non speaker, somehow that's perfectly fine. And the only person who's sometimes there to protect the kid really is the parent. And so we, you know, we have to trust, you know, it's really important to trust that parental instinct. When something doesn't feel right, it's probably not right. And, you know, you do have to. You know, I hate to say that you have to be a little cautious about the clinician, you're saying, but sometimes you do, because they might be coming from a mindset where they haven't really done that full deep dive on the root cause piece. And that's why maps exist. It's really to have a different system of training to help people come to a model that's really much more effective and to help unlock each kid's potential. And that's really what that exists for. And the idea is to grow it, not to be satisfied with people who train. But this is a platform that can really train all pediatricians, all developmental pediatricians, neurologists, into a system of thinking that is really going to be more effective for your kid. And yes, it will take more time, yes, it'll take more mental effort. It may not be as good for your bottom dollar cause you're not able to just move volume in your clinic. But the fact is the kids are going to get better and that's what are we doing this job for?
- [34:03]
Podcast Host/Interviewer
I would argue that that population of practitioners who are affiliated with MAPS and those more conventional practitioners who are interested in going down the MAPS path, the unifying quality is these are people who truly want the best for these kids, are willing to challenge their own worldview, expand their own awareness of what's happening and how they may be able to help. So again, it takes a certain mindset of people. And that's why as a parent who you decide to hire, you're right, you should have some skepticism with practitioners, but choose the right one first. Right. Try to really distill those qualities you're looking for. And that's what MAPS is all about, is about training and educating and empowering and equipping these practitioners who are so heart centered with more information and tools to be able to serve this population. So, yeah, I can't have enough episodes featuring the Match organization. And I'm so excited to do whatever I can to help it grow. But that is what, from a parent standpoint, who you're working with, who gets to be on your team to be able to serve your child is an incredibly important decision.
- [35:19]
Dr. John Gitanis
And well, I'll tell you, there's one other reason why you see a lot of those people in the room. These are clinicians, but a lot of them are clinician parents. And they've seen it, they've seen both sides of the equation. And that really does change a lot. You know, when you have, when you're seeing a clinician who's not just a clinician, they're a special needs parent, then they have a very different perspective on things. And that's often why. So, you know, you think about why would somebody change their worldview? Why would somebody put that mental effort into doing that and challenging the doctrine that they grew up under? And it's often lived experience that does that. So for the clinician parent, what often happened is they went through the process, they've seen it from the inside and they saw that what was being done didn't work for their kid. And so they've seen the good and the bad. And you know, and this is what often led them down that path of finding a new system, a new way of doing it. And I think for those clinicians, it's very deeply personal too. They, they see their own kid and the kids that are walk, that are in front of them. And so there's nothing better. I mean, that's really, you know, that's the kind of person you see there's another group too. I mean, there are some people who've just done this a lot of years and they've seen what works and they've seen what doesn't work, and they just want to change based on their own clinical experience. And so we have some very experienced senior doctors who really come to really learn a different approach.
- [36:42]
Len (Host of Autism Parenting Secrets)
Great.
- [36:43]
Podcast Host/Interviewer
Yeah. No, and I think as you were talking about what you learned back when you started and kind of the guidance you were getting, it seems a bit disheartening that in many ways things haven't really changed much in a couple decades in terms of what parents may experience if they go see more mainstream practitioners. But with MAPS growing especially, and the number of people who are better equipped to serve this population increases. How do you see this evolving now? Because things are rapidly changing. And I know with Meadow Health and, and your association there and what you're trying to do within that organization, how do you see things shifting over the next couple years?
- [37:23]
Dr. John Gitanis
I think the really important thing is if clinicians are hopefully present and in the room to witness the positive effects of treatment, then things are gonna change quickly. So we're seeing this in spellers and I think we're seeing it in leucovorin. I mean, these are both relevant things. But the leucavorin, for example, when you treat enough kids and, and it's not just leucovorin, it's gut microbiome, nutritional changes, sometimes restricted diets, mitochondrial cocktails, there's quite a few things. But leucovorin is kind of low hanging fruit because as many as 70% of kids have cerebral folate deficiency. And so you treat enough kids and you get back this feedback that. I mean, I've had kids literally who've used their first words after starting leucovorin. I had one patient who, and I'm not making this up, who said, I love you, mommy. First words he ever spoke. And that was like two weeks after starting Lucavorin. How do you not want to keep trying that? I mean, you want to keep trying it. So what would happen is a lot of the large academic medical centers were telling their physicians, you're not allowed to write for. And so I'm getting a ton of phone calls from colleagues saying, can you see this patient? Can you see that patient? I think he can use Liquorborn, but I can't, I'm not allowed. I mean, that's just crazy. Like, that clinician cannot write for a vitamin, basically, but they can't. And then the other part too is like the insurers Started to deny those scripts as well. So I have a few families who are paying quite a bit out of pocket. So we realized there are a lot of kids who don't have access. And I just think it's one of those things. It's safe, it's cheap, it's effective, like, let's provide that access to get them there. And I view the same thing with spelling. I mean, it's the same kind of thing. A lot of kids don't have access right now. There just aren't quite enough people out there. But what's happening is you're seeing it begin to really pick up because as you see more and more spellers come into the office and as more and more clinicians watch them spell, then the attitudes will have to change. They will. And we're going to get more and more clinicians. But the real hurdle there, it's very similar to Lucavorin issue. So there's structural issues that impede patients from getting there. So school systems still won't do it, insurers will not pay for the services, and you are not allowed to bring it into almost any school at this stage. And so I've had patients who set up sessions to demonstrate spelling to the teachers, the administrators and therapists of their autism schools. And everybody sits and watches it. And at the end of that, they still say, no, you can't use this in school. It's crazy. It's really crazy that you can witness that and deny it. So they're so afraid of the fact that Asha is against that or the pediatricians are put off to Lucavor. And just because the American Academy of Pediatrics put a statement against the data we have thus far, and yet we continue to use almost half a million kids on antipsychotics, you'd be using them for years without any safety data. Well, and the safety data we have is not reassured. But without any clinical trials for that length of time, totally outside of FDA guidelines of eight week use, I mean, we're seeing it eight years or longer. We have kids growing up who've never been off of three or four psych meds their entire childhood. And a lot of those meds are not FDA indicated. So that is all acceptable to one camp. And yet the spelling vitamin B9 or not. And so I do think the tide has to turn as you get more and more of these stories coming back. But what we do have to figure out as a community is how do we get more access to spelling? How do we get the services paid for? How can I get the ABA dollars that I'm getting, the 40 hours a week of ABA therapy. How can I convert some of that to spelling time? So those are the things that would make parents lives so much better if we can actually get coverage for those services. And I think, unfortunately, what's being asked of is that we do more and more studies. I don't know how many more studies we need. Frankly, when I see a kid who comes in and spells right in front of me, I don't need a study to figure that one out. But this is what I'm told is we need more studies. So I guess that's what we'll get. I mean, that's what we'll do. But we have to, I think. But the more we see it and the more patients who use it, it will grow, it'll steamroll, and I think it'll be undeniable. And the more patients who respond to biomedical approaches, treating your gut microbiome, treating, treating your mitochondrial dysfunction, treating cerebral folate deficiency, more and more and more kids are going to show those responses. It's going to become undeniable over time.
- [42:14]
Len (Host of Autism Parenting Secrets)
Yep.
- [42:14]
Podcast Host/Interviewer
No, and the stances that you mentioned, it makes no sense. It's not logical, especially if you really look at the facts of the matter. So that's where. Bringing it back to the title of this episode. Right. That's why the independent thinking of the parent and the practitioners is so incredibly important. Because if you're waiting for consistent consensus on some things which seem ridiculously obvious, that consensus can take many years, if not decades. So in terms of figuring out what can help your child, if you wait for consensus and just wait for that permission, you may be missing a huge opportunity again to meet your child where they are. And that's where I know a lot of what you talk about, and I know a lot about what meadowhealth is trying to bring together under one roof is really about making that easier for parents to be able to access that type of care.
- [43:07]
Dr. John Gitanis
Yeah, I think it's recognizing that, just as you say, we don't have 20 years to wait for consensus change. Like, we have to. We really have to nudge the system pretty hard to move it along further. We're going to see that with spelling, and I think we're going to see that with some of these biomedical approaches too. But to do it, we do have to show the. We have to show some evidence, we have to show some proof. And so the idea behind building a large telehealth platform is like, that's a really Good way to show large volume proof of improvement. And so we're collecting the data. We have built systems in real time to show outcomes. And once the more patients we get, the stronger the data becomes. And I think it'll become undeniable. With large, large patient series, this'll be an undeniable reality. And we want to build spellers into this too. We want to use the same outcomes data to really show the spelling benefits as well. So we'll use it for quite a few therapies. It won't just be Leucavorin.
- [44:09]
Podcast Host/Interviewer
All right, fantastic. Well, Dr. John Gitanis, is there anything else that you'd like to say as a parting message for our listeners? Anything that you think would be useful for them to keep in mind as they are navigating and making decisions for their child and their family?
- [44:22]
Dr. John Gitanis
I would say that we talked about the independent thinkers and how important that is. I just want to bring that back to the kids themselves because they're the most important independent thinkers in all of this. And I think it all comes back to recognizing that intelligence and that kind of willfulness inside of each kid and acknowledging that. And when we do that, that's when magic happens. And the world's not fun if there's no magic in the world. So let's embrace that and let each kid show their inner beauty and intelligence.
- [44:56]
Podcast Host/Interviewer
I think that's a powerful message to end on. And then, Dr. John, I'm looking forward to seeing you at the next MAPS conference. I know it's in September in Philadelphia and I'll include a link in the show notes for parents listening. There's a parent portion of that. So a great opportunity to learn and to get access to practitioners like Dr. John. And that's something I'll include in the show notes. And then with MeadowHealth, which is really newly available for parents. I know next week's episode I'll be talking with John Slattery. You're the co founder with you with MeadowHealth and we'll go deeper in terms of that platform and the possibilities that provides for parents. So Dr. John, I really appreciate you spending the time time today.
- [45:40]
Dr. John Gitanis
Thanks. My pleasure.
- [45:41]
Len (Host of Autism Parenting Secrets)
Your child needs you running on all cylinders now. And the fastest way to rise is with personalized one on one support. Get started today. Go to elevatehowyou navigate.com.