We give a detailed history of Theo's background before autism and lead up to his diagnosis of Autism and PANDAS.
---
This episode is sponsored by Anchor: The easiest way to make a podcast. https://anchor.fm/app
Support this podcast: https://anchor.fm/purelivingfamily/support
Listen to the podcast here. Transcript below.
Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva, my little brother is Theo, and my mom and dad are Shawn and Angela.
Shawn:
Hello, friends. Welcome to another episode of The Pure Living Family Oodcast. Today we have Dr. Armen Nikogosian. I probably said [crosstalk 00:00:36].
Dr Armen Nikogosian:
Nikogosian. Yeah, got it.
Shawn:
We call him Dr. Nik, for short. So Dr. Nik, welcome to the podcast. Thanks for joining us.
Dr Armen Nikogosian:
No, thank you for having me. It's great talking to you guys.
Shawn:
We've been ... Go ahead.
Angela:
We started with Dr. Nik a few years ago now, and just have been so grateful for the referral. I'm not sure who referred us to you, but have just ... We were in the world of looking for a new functional medicine doctor for Theo. He had been recently diagnosed with PANDAS. And Theo's local pediatrician obviously wasn't very trained in PANDAS, and was so great and just said, "Hey, do your own research. I'll do whatever you need me to do."
Angela:
So we started researching, found you. And have just been so grateful for the knowledge that you've brought to our team and Theo's diagnosis. And DR. Nik, tell us about yourself?
Dr Armen Nikogosian:
Well, I'm a medical doctor. I've been practicing for about 21 years, 22 years almost. I started out originally as an internal medicine primary care doctor, but I also had dabbled in ... I was a hospitalist for a little while. I worked hospice. I worked intensive care. I worked HIV clinics. I worked at the VA for a while as a chief of primary care. I've worn a lot of hats over the years.
Dr Armen Nikogosian:
About, well, in 2009 ... I'm sorry, 2010, my second son, I have four children, my second son was diagnosed with autism. And that really changed a lot of things for me. I think the primary thing that it did was we sought out help for our son, which, from my perspective and my wife's perspective, something happened to him because we saw this big change in him. But unfortunately the feedback we were getting from doctors that we saw was pretty much pat on the back do therapy, "Good luck, hope he gets better."
Dr Armen Nikogosian:
And there's something just didn't sit right with me. And prior to this I had always been interested in what back then was called alternative or complimentary medicine. I'd incorporated that of course into my practice, I always had an interest in that but I never quite made the dive. In order to help my son I spent the next few years really researching that aspect of medicine, which I didn't really get training in, in medical school or residency. I had to learn on my own.
Dr Armen Nikogosian:
And I found out there was actually a lot of things that you can do for autism. And within that group of autism, I've grouped developmental delays, PANDAS, PANS, all these so-called fringe diagnoses. I consider them fringe in terms of not the diagnosis itself, but in terms of the fact that you can do something about it, that it's actually an actionable diagnosis you can work with.
Dr Armen Nikogosian:
Anyway, I had researched that for several years. I started treating my son. He started getting better, and then I started ... Friends and family and other people that I knew that were in the autism community, here locally in Southern Nevada, they started asking me to help out with their kids, which I did. And it snowballed, and before long, I decided to just change my whole practice to reflect that, which is what I had always wanted to do anyway. So it worked out actually really well in that regard. So then I started doing functional medicine full-time.
Dr Armen Nikogosian:
Currently I have a active full-time functional medicine practice here in Southern Nevada. We do see patients from all over the world. We do remote consultations, we do live consultations. It's about 80% children with autism, and then it's about 20% adults. Primarily adults with gut issues, autoimmune issues, and some adults just seeking antiaging and just optimizing health as well. And that's currently what I do. And my passion definitely lies in treating children with developmental delays that essentially the parents are not getting answers from their regular doctors in terms of how to help.
Angela:
[crosstalk 00:05:08].
Dr Armen Nikogosian:
There's a pretty good crossover with that, with the adults, with the immune issues. Because as we've discussed many times, so many of these developmental delays are immune mediated as we found out. Whether it's PANDAS, PANS, autism, even to some degree even ADHD as well.
Shawn:
Well, real quick. Let me just jump in here because I did get my functional medicine certification through the Functional Medicine Coaching Academy. And I'm curious to know more about your training in that space. So your an internal medicine doc, you get board certified in that. How do you get certified or how are you introduced to the functional medicine model?
Dr Armen Nikogosian:
There's a couple of different ways for certification right now. There's not a board certification in functional medicine as a recognized specialty like cardiology, internal medicine, oncology, those kind of things. But there's absolutely a line of training, in several lines.
Dr Armen Nikogosian:
In my particular case, I focused primarily on IFM, which was the Institute for Functional Medicine. It was definitely more geared for adults, gut issues, immune issues, detoxificational sorts of things. And then the other line that I went down was the Medical Academy to Pediatric Special Needs or MAPS. MAPS is essentially functional medicine training for practitioners that want to treat children, specifically children with autism and/or other developmental delays, which that whole umbrella of other disorders there.
Dr Armen Nikogosian:
Those were the two primary ones. I think there was ... I mean, there were many other areas that I looked into. There were certain Lyme treatments and detox protocols, and there was a lot of scattered tools that I could pick up. And the way I look at is I was making my toolbox bigger. I used to have those little toolboxes and now I got the big drawer, two double-decker drawer. And in order to make that double-decker drawer I had to crawl around the garage, picking up tools for a couple years, and they were scattered all over the place. But thankfully there were two main bins with the tools so that helped. And that was MAPS and IFM.
Shawn:
Do you feel like your son was really the one that drove you to get that additional training and certification, because you wanted to find other ways and means of helping him specifically?
Dr Armen Nikogosian:
Absolutely. Well, and the reason was ... Because I had thought about it before, I was always interested it in this field. This was definitely where my passionate laid. The problem is life. You have a practice, it's financially viable. You're supporting your family. It's scary. It's scary to transition to a different model. The way functional medicine is structured, unfortunately it's very hard to take insurance. There are doctors that pull that off. We don't have an insurance model set up through ours because I really wanted to practice it the way I feel it should be practiced, without any constraints from third parties.
Dr Armen Nikogosian:
So it was risky to do that. And I never really pulled the trigger until essentially I feel like I was for forced to. My son sort of forced my hand, and a good forcing. I certainly don't mind. But sometimes you need these crises in your life to uncover opportunity. And I think it's, what is it, that says the Chinese character for crisis is supposed to be a opportunity in something else. I always get that wrong.
Dr Armen Nikogosian:
But crisis does opportunity, and certainly having a child diagnosed with something like that is a crisis. We've all been through that and we all know how that goes and it's a big deal. So yeah, I don't know if even today, if that hadn't happened, I don't know if I would've pulled the trigger on changing the way I practice.
Angela:
And that's why we love talking to you and our appointments with you, because you are walking this journey with us. You don't feel like you've hit a end or a resolution with your son. You're constantly learning, you're constantly evolving. And he's constantly teaching you. And I mean, it's a communication and dialogue with you.
Angela:
And I don't feel like you have this ego where, "You have to do this protocol and you're going to change your son." It's more of a communication and dialogue between, I mean, a parent-to-parent. And that's why we're so grateful that we found someone like you that's able to have these conversations with us.
Shawn:
Well, I-
Dr Armen Nikogosian:
And I think on that point, it's an important thing to say is, for all the different things I learned from these organizations or my colleagues or whatnot, I actually learn as much from the parents, from the kids. You have to always keep an open mind, because so much of this is uncharted territory.
Dr Armen Nikogosian:
It's better than it was 10 years ago, and so even better than five years ago, it's constantly evolving. But there's a lot of gaps. There's a lot of gaps in what we're doing and where we're going with it. And you have to be open to information. So if something works, regardless of where that source is, you got to take it seriously and look into it and see, "Is this a one-off anomaly or are we onto something here?" Maybe this is something that can help other families too.
Shawn:
Well, and that's one thing that Angie and I have loved about our interaction as well is that you have zero ego. I guess that was a question I wanted to ask you, is you obviously have far more training and certification than most of the people you interact with, parents, us, for example. But every time we bring a question up, you're always open to at least having the conversation.
Shawn:
Is it that knowing that there's still more to be discovered that allows you to be that way, or what makes you so open to conversation and maybe alternative modalities?
Dr Armen Nikogosian:
I think anytime that you're treating a problem that is evolving, where it hasn't been all figured out, which personally I don't know if anything in medicine's been all figured out. But some things have been more figured out than others, like diabetes for instance, or high blood pressure. We've got pretty good treatments for that. You don't have to necessarily reinvent the wheel for these things.
Dr Armen Nikogosian:
But when you're getting into something like autism, a spectrum disorder. First off, it starts off with it's a faulty diagnosis. It's a psychiatric diagnosis, not a medical one. They're lumping together sometimes some very disparate kids, that have really different things driving it. So right there, the first thing is you're dealing with that. You're dealing with a framework that, that in my personal opinion, is faulty and out of date, which is the whole diagnostic framework that they have. And this revision that they did a few years ago where they got rid of PDD and Asperger's and some other things, I think that made it worse. I don't think it made it better.
Dr Armen Nikogosian:
The second thing is it is evolving. You look at all the money that the NIAID and Fauci's cohorts and all those guys, that they spend on vaccination and COVID research and gain-of-function, and I mean, billions, billions, billions of dollars. Same thing, HIV or Aids research, cancer research, they got deep pockets. Autism doesn't have that. And I don't know why it doesn't have that, it should. It affects, by some estimations, one out of 40 boys now, and it's crazy. That's two and a half ... What is that? That's several percentage points of the population. I mean, that's huge. And then this thing didn't really exist to any extent 30 years ago. Why isn't there more money for this for research? And the money that is there is mostly spent on genetic research, which I think is very low yield for what we're trying to do. It's helpful, everything's helpful and I'm appreciative of it, but I think it could be so much better spent.
Dr Armen Nikogosian:
Unfortunately, so much of what we do, we try to follow the evidence as best we can. But at least in the journals, the evidence is sparse on some of these things. So we have to go a lot of times off clinical experience and anecdotes, and really just what I call more scientific medicine. Scientific medicine is where you may not necessarily have data on it being done, but when you go through it scientifically it makes sense. So it's worth a try, especially if you have no other options for the kid.
Dr Armen Nikogosian:
So when you're in a situation like that, you have to have an open mind, you have to have humility. I couldn't imagine it any other way. I appreciate the comment about the ego, but my wife would totally disagree with you about that. Maybe I'll have you call her and talk to her or something. But yeah, you have to keep an open mind for it because it is ... And even when you do figure it out for one kid, great, you figured it out for one kid. Now you got hundreds of other kids that it ... Maybe there'll be some parallels, maybe there won't. Each case really is unique.
Dr Armen Nikogosian:
It's hard. It's one of the most challenging things I've ... Well, it is the most challenging thing I've ever done in medicine and I wouldn't have it any other way. Like I said, I love coming to work every morning. I always look at the schedule, I'm like, "Ooh, what do I got today? This should be good."
Shawn:
Well, with that, one example, story you gave, and maybe you can sum it up for us here on the podcast. You had mentioned the Hindu tradition that you had heard. Why don't you tell us and our viewers what your experience or what you heard there? Because Angela and I both appreciated it.
Dr Armen Nikogosian:
Okay, well, I'm not a Hindu so I might get this wrong. For any Hindus out there, especially those that are familiar with the religion, I apologize if I'm getting this wrong, but this is my understanding of it.
Dr Armen Nikogosian:
In this tradition they'll have avatars come down. We all are familiar with the word avatar, it's that little cute picture you got on Discord or whatever. An avatar, it was from Sanskrit from the old Hindu text. It was basically, it's like an angel coming down. I think avatars can also be bad too, they can probably be demons too but we'll focus on the good ones.
Dr Armen Nikogosian:
So they come down and they change people's lives, coming down. And it's not always all happy, fruity, everything's great. Many times, sometimes these positive changes may initially not look like it's a positive change. It may actually look like a bit of a disaster actually in the beginning. Which I won't speak for you guys, but I know I can speak for myself, I mean, that's exactly what I thought was happening when this whole thing dropped. Usually it's the dad goes through the denial, which I did for about a year. "They're wrong."
Angela:
Shawn did too.
Shawn:
I definitely did.
Dr Armen Nikogosian:
Right. And then you go through the uncle so and so who's a rocket scientist now, and he didn't talk until he was six. And you find all the exceptions. And you got to go through all these stages. Then there's the self-grief and the self-pity. "Why did this happen to me?" Nevermind the kid, who's actually the one suffering. The suffering is only secondary for the parents by extension, it's really the kid that's suffering.
Dr Armen Nikogosian:
And then one day it just ... You got to get through all that and one day it clicks and you realize, "Well, this is what it is and we need to do something about it." That's I think the first step. And then you start realizing, as these things happen, that this person has been sent ... Well, you can look at it as this person has been sent down to help the family.
Dr Armen Nikogosian:
That's been my complete experience with my son. My son, Jonah, I mean, he's absolutely ... I mean, I almost look at it like he took a bullet for the family. Because of his issues, it elevated the health of our whole family, because of the things that we started focusing on. When you have more than one child, you're, you're not going to do one thing for one child and not for the others. If you're going to get to the health of one child better, of course you're going to do that for your other kids. You're going to do that for your whole family.
Dr Armen Nikogosian:
And it starts spilling off onto yourself in terms of what you're doing. Sometimes I think it's out of fear. If you're going to have more children, you're fearful, you're like, "Well, I don't want this to happen again. And what did we do wrong? What can we do better?" It makes you really reassess your life in terms of what are you doing in your life. We all go through this period when we were younger, where we have this idea that we're immortal, that this won't affect us. We can eat what we want, do what we want, live whatever lifestyle we want and we're going to be okay. Just because in your twenties you are okay, and you just bounce off, roll off and keep going.
Dr Armen Nikogosian:
It doesn't continue unfortunately. I'm sure there's a few lucky souls that may be, but for most of us it doesn't and we got to start making those changes. I think everybody comes to a different place in terms of how they make those changes. But I can absolutely say one huge impetus for that change is having a child with special needs, with really that's being medically driven with some physiological dysfunctions. What do you do to fix that? And what does that do to everybody in the family as far as elevating that?
Dr Armen Nikogosian:
I mean, I honestly feel ... I do believe Jonah was ... And this is where we get into lulu land a little bit here, but yeah it's, how do I say this Yeah, I guess, in no easier way to say it than, I mean, he was just sent down to help us, and he did. I mean, he has.
Angela:
And I think that's such a huge lesson to learn. And a lot of time and heartache has gone into that before you reached this point. Because I know for me and Shawn it's taken a lot of heartache for us to finally be, "This was the way we were supposed to live. This is the way Theo was supposed to be. And what can we learn from him?"
Angela:
Because sometimes it just feels like we're running a million miles an hour. What can we do to help him? What's next? What do we do after stem cells? What do we do after that reset? What do we do after all these things? Instead of just slowing down and being like, "What are we here to learn from this experience?" And I think that's why we love having conversations with you, because I think sometimes you bring us back to that reality. "Hey, let's focus on Theo here. Let's not focus on what you guys want for Theo, let's focus on what Theo needs."
Dr Armen Nikogosian:
Yeah. No, absolutely. I really actually think that parents have to go through a mourning period-
Angela:
Totally.
Dr Armen Nikogosian:
... in order to really be balanced on this. And what you're mourning are those expectations you had for your child before this happened, because we all create them in our heads. And I think until you let go of that, I think it's hard to really focus. Now I'm not saying you just write off the kid and have zero expectations of him. No, you still have expectations like any parent would, but you have to reformulate them based on where the child is now.
Dr Armen Nikogosian:
Of course, especially when you start early with treatment, everybody shoots for recovery and recovery is real. It is a minority of kids that it happens to, but it is real. But when it doesn't happen, some families feel like they lost, it didn't work. And to me, I mean, you always go over that certainly, but the goal needs to be to get that child to the best functional status that you can, wherever that ends up being. And I think until you let go of those, I call them pre-diagnosis expectations that we all form in our minds. It's hard because then you always have that little bit of ... Well, it's bereavement really.
Shawn:
Yeah.
Dr Armen Nikogosian:
And that's exactly what it is. And I don't mean to say the child is dead and [inaudible 00:21:40] start over, but what should be dead are these expectations. We have to be realistic in terms of looking at what we can do for our child and the expectations that we have for them.
Dr Armen Nikogosian:
Because the one thing that I've learned is, no matter where the child is, they still want happiness and love and all the same things any other kid wants out of life. That part is no different whatsoever. Just because the kid can't talk, that doesn't change anything. The only thing that changes is it makes it hard to ... Okay, communicate, certainly there's some challenges there. It doesn't change the child's mindset. And still being able to give that in the best way you can, that's what we want to do. And of course, try to foster as much independence as we can.
Angela:
I also think that-
Shawn:
Well, and I think from my experience, just one second to respond to that, is it's almost like a reevaluation of our expectations every three, six, nine months. Because sometimes we set these goals and then we're not moving towards those goals. And I totally understand what you're saying, is that it's almost like this death of this expectation of we wanted this to happen and it's not happening, so now let's reevaluate our expectations. Sorry, Ange.
Angela:
Oh, that's okay. I mean, I, I totally agree with what you're saying too. I just was thinking, as you were saying that Dr. Nik, about the core morbidities that these children have and treating those, let's talk about those a little bit. How many kids in your practice only have autism and aren't dealing with anything else?
Dr Armen Nikogosian:
That's pretty rare actually.
Angela:
Yeah.
Dr Armen Nikogosian:
Very rare actually. I can't actually think of any off the top of my head because ... And the only ones I think that do, frankly, are the ones where we haven't looked. And they've got that diagnosis from early intervention from when they were two or wherever they got it, but yeah, you don't see it. It's complex. The average kid I see has four, five, six problems, easy, if not more. And that's what makes it so complex, the way they interact and everything.
Dr Armen Nikogosian:
But what we got on the flip side of it, we've got wonderful, dedicated parents, and we have children that are troopers. I mean, that's the only word I can use for them. I mean, they really are. I mean, they are kids, they're tough. They've gone through so much. They're hard workers. We expect all this from them from therapy and they got their schedule jam-packed at five-years-old. And they're going to everything. And I have an immense amount of respect for our children.
Dr Armen Nikogosian:
And I see it, as they get older, some of the older kids, particularly the non-verbal ones, they have the hardest time. They have such a hard time expressing themselves, they have a lot of frustrations. When some of these older kids start communicating through letter boards, typing, alternative methods, this is exactly what we hear from them. That they're in some cases wanted to take a break or that they were tired, but on the other side of it too they talk about their frustrations. Well, I don't want to say talk, they communicate about their frustrations. About how everybody underestimates them, how people treat them like they have intellectual disability. Some of our kids do have intellectual disability, but I'll tell you a lot of them don't. A lot less than people realize, and certainly a lot less than are carrying the diagnosis.
Dr Armen Nikogosian:
I think those are all things to remember when we're interacting with them, is to presume are competent until you see that they're not. And when they're not, it's okay, and teach them. They're capable of that. Maybe it takes a few extra goes, maybe it takes a little more reinforcement, but they're still capable of all these things.
Shawn:
We just had our therapist read Underestimated by JP Harding, JB Harding, I should say. Because that was one thing that I learned, Ange and I both adopted this, I don't know, a year or so ago of speaking to Theo like he understands everything, instead of making the assumption that he doesn't understand. And we felt like there was a switch. He responded better and he listened to commands better when we actually treated him as though he understood everything. Even not knowing for sure if he did understand, which was really cool to see.
Shawn:
But we just have about five minutes, oh, I guess four minutes. The one thing I want to say is Dr. Nik had helped us from very beginning to really make some huge leaps. And I think first thing we did was did the gut reset. We used the greens, we continue to use the greens with Theo on a daily basis, which I've adopted as well. You've talked about how it improves everyone's health. And that's typically the route you go, is you help a lot with gut health, is the starting point. And then from there you carve out their own personal path?
Dr Armen Nikogosian:
Yeah, absolutely. Well, we try to figure out what bucket, the physiological bucket or pathological bucket, whatever you want to call it, the kid falls into. And gut is usually featured quite prominently in there. Because remember, gut and immune kind of tie together. 80% of your immune system's in your gut. We look at mitochondrial dysfunction, that usually plays a pretty big role. We look at toxic burden, whether it be mold or metal or pesticides. In a large proportion of patients, that can be an issue. And then there's a whole host of other things that as well.
Dr Armen Nikogosian:
The grains that you mentioned I think are definitely a great addition, because one of the things we're constantly fighting is oxidative stress. Our kids are more oxidized than the average kid because of all these stressors going on in their body, and we're trying to quench that through antioxidants and various nutrition and supplements. And those greens can provide that, amongst other things.
Shawn:
Perfect. Anything final from you, Ange? Just have about two minutes left.
Angela:
Sorry, I had muted myself. I guess one last question for you, Dr. Nik. With parents, what is one thing you wish parents would know going into this diagnosis or their first appointment with functional medicine?
Dr Armen Nikogosian:
The one thing I wish that they would tell parents right away at early intervention, or as soon as they find out about it, is that this is something that in most cases is actionable. You can do things to make the kid better. In some cases, completely better to full recovery. We have seen that in younger kids, that at this point they're indistinguishable from your typical child at eight or nine. But up to, maybe get the 13-year-old severe, low-functioning kid out of diapers and potty trained. Which may seem like a small thing to a lot of people, that's a big deal for independence.
Dr Armen Nikogosian:
So there's a whole gamut of things that you can do to improve that function, and how far that function goes is anybody's guess. But it really depends on how the kid response. But the important thing is, is that as parents, because we're, frankly, the child's only hope, we have to give the child that opportunity to envision that or to achieve that. And we want to give that opportunity to the child so that the child can be the best they could be.
Dr Armen Nikogosian:
Which isn't much different from what ... Like I said, that's what we do for all our kids. We want them to be the best they can be. I's really no different. It's just not accepting the fact that this is a done deal, therapy's the only option. And I'm very supportive of therapy, don't get me wrong. I love therapy. Therapy is important. It's just not the only component. There's more stuff there. I wish that awareness would get out there, because it breaks my heart when I see somebody bring their kid in, they're eight and a half years old and they haven't done a single thing from our end. And we can still get some motion on it.
Dr Armen Nikogosian:
It's just I wish they would've brought the kid at three or something like that, or three and a half. But you know what? Better late than never. We'll take it at any age. But that awareness, the better that awareness can get out there, I think that the better off our kids going to be in the long run.
Angela:
Thank you.
Eva:
Hi, this is The Pure Living Family Podcast. I'm Eva, my little brother's Theo, and my mom and dad are Shawn and Angela.