Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Autism Advocacy: Why Access to Care Matters More Than Ever | Dr. John Gaitanis on Meadow
Transcript
- 0:00Speaker A: So Dr. G, can you tell us a little bit more about Meadow and what the offering would be for parents of children with autism?
- 0:06Speaker B: Sure, yeah. First, why we developed Meadow was that the leucovorin was a great example of a situation where we had a treatment that had shown efficacy in four double blind placebo controlled trials. And yet a lot of major medical centers, pediatric hospitals, were not allowing physicians to write for the prescription. And we're talking about a B vitamin, something that's been around for 70 years, extremely safe. Not only that, but in those double blinded trials, it showed improvements in core symptoms, things like language and development. And even beyond that, it addressed some of the clear underlying root causes. So in this case, cerebral folate deficiency. So it really, Leukovorin's a great example where we have an underlying root cause where cerebral folate deficiency is affecting development and even possibly causing seizures. And we have a very clear biologically driven treatment pathway that happens to be really safe. And so because we had a safe treatment that was being denied of families, we wanted to create a platform that allowed parents to access treatment that will help their kid. And at the end of the day, it's really about can we help as many kids as possible. And so there are a lot of different treatments that I think parents know will be beneficial. Not just treatments, but testing too. So if I want gut microbiome testing, I want to, if I want to test mitochondrial functioning or if I want to look at other possible markers of inflammation, I need to have somebody who can write that prescription. But unfortunately my current team doesn't have the knowledge or willingness to do that. So here's a platform that we're trying to create that will do that. And then if I want to access leucovorin or a gut microbiome treatment or mitochondrial cocktail or other really low hanging fruit to help improve core symptoms, again, it's the same thing. If my clinical team won't do it, I want to make sure kids have access, because this is really about access. I don't want any child ever denied access to a treatment pathway that I know will help their overall health and wellbeing. And so telehealth actually can be one of the solutions to providing access. And this is a little different than like a normal clinical visit. Cause it's really more parent directed, it's physician guided, but parent directed. And it's really entrusting the parents know what is going to heal their kid. And we, we simply want to make those pathways available to them. There is one other benefit though, is that in this world now of digital, we can actually also show outcomes. And so when parents are willing to share their outcome histories, we can begin to see exactly how many kids are benefiting from say, leucophone or how many kids will benefit from gut microbiome treatment or mitochondrial treatment that allows the development of very clear outcomes measures, but then ultimately might even give us some ability to create AI generated protocols that will hopefully change the whole paradigm for how these conditions are treated.
- 3:06Speaker A: I think it's just phenomenal and fascinating because no, I don't think I, a single mother that I, that I'm in contact with, with children with autism on the profound end would tell you that they're looking for this magic pill. And I think that what is so fascinating to me about, you know, like the mitochondrial cocktails and the gut microbiome underlying root cause and the use of leucovorin is that this plays into moving the needle one or two, two points. Either way, it's, it's a full body, it's a full plan, it's a, it's a understanding that there are so many different ways in which we can grow the healing for your child. And it doesn't, it doesn't reduce the difficulty of what this all means, but it helps you expand your own understanding that there are so many things at play here. And I think that it, it, it ends up forming a foundation of peace alongside the journey of this healing because it is so taxing and it' exhaustive. But to know that it's not just going to be one thing. There's going to be multiple different things along the road here, but we can do it. And if we can stay open to those possibilities of using leucovorin in a certain way, asking the right questions to a telehealth physician, being open to what is offered, like you say that low hanging fruit. I just know so deeply as a mother that expansion of possibility for healing is, I don't know, it's unmarkable. It's a felt sense. But there's not a single mother that I believe that you would talk to, having gone through this, that would say that it wasn't worth it. And I believe that that's, that's what Meadow and, and your work is, is showing is that it's not just this one thing, it's the combination of all this. And we as a mother and physician, we are in a system too of caring and healing for the child.
- 4:58Speaker B: I'm gonna, yeah, I'm gonna speak, I, I just wanna give one example of how Say the traditional approach would compare to the healing approach. And, and so, and, and again, this kind of ties into how, and the reason, you know, I want to work on medical education, the traditional approach is that we have kids who, non speakers who experience say abdominal pain, severe abdominal pain, maybe they have a cavity and as a result they can't communicate that easily. So they might have self injury, they might have really impaired sleep and a lot of aggression. And you go through that traditional pathway and you're given an antipsychotic for abdominal pain and not only are you given one, but you might stay on one for years and years and then there's no effort to work on the communication, you know, beyond a simple, you know, computer screen, you know, AAC device that might allow you to say, you want a hamburger? It's not really giving you meaningful communication and there's not really a push to go beyond that because the clinical team doesn't actually see that your kid's a lot smarter than anybody ever get them given credit for. That's a reality for a lot of kids. And in no world is it appropriate to give someone an antipsychotic for severe GI inflammation, for a tooth abscess, for any of these things. But we do it every day. So that's the standard approach. I hate to put it that way, but it is, it is the healing. Yeah, and the healing approach is let's get at the root cause, you know, okay, your kid hasn't slept in three nights and has self injury. Why? Why? What's going on? Is there pain? You know, is there an infection? Is there inflammation? Maybe they have Lyme disease. I don't, how am I going to know unless I work it up, you know, so you kind of start to go through all the things that can cause pain, infection, inflammation. But then you have to ask beyond that, like what are your, what are the sensory integration challenges you're facing that might play in how much is OCD playing into it? How much is communication playing into it? That's a really, really important part. You know, you start to pull these things together and then you ask, okay, what can I do in terms of diet, nutrition? Is that playing a role? How about bowel movements like constipation is a really common, you know, trigger for self injury. You know, see, working through and thinking about it at a root cause level and actually then understanding too, that that child, over years you begin to realize, okay, every time, you know, Jack or Timmy has self injury, it's usually related to an infectious trigger or it's you know, it could be a full moon. There are a lot of things that, like, relate to these things, but you, you begin to know that over time. And so you can begin to figure out a plan that will help those symptoms because you're getting more at the root cause as opposed to just here's your antipsychotic. But once you get to the root cause piece and you could start to build more and more on the communication piece as well. And once you do that, the are remarkably better regulated. And so the ultimate outcome of these two pathways is dramatic, like on one pathway.
- 7:52Speaker A: So you mean being able to share what you're feeling actually helps a child? Shocking.
- 7:55Speaker B: Oh, my gosh.
- 7:56Speaker A: Right? My child being able to tell me what hurts is that's going to help them regulate. Gosh, I wouldn't have thought that.
- 8:04Speaker B: Yeah, it really destroys you as a person to feel like there are kids who are suffering in pain and sort of locked into their bodies, can't communicate it, and are not being treated. It really hurts to know that that is a reality for many and you simply want to take away the pain, take away that part of it, and give them a means to show who they are and communicate. That's all. That's all. And, and, you know, let that kid open up so that they can, you know, really live that, that full life and, and achieve. But you can never get there unless you really get at the root causes, get at that understanding, and have a healing approach to managing their systems biology.