Episode Transcript
Jill Brook: [00:00:00] Hello, mast cell patients and wonderful people who care about mast cell patients. I'm Jill Brook, and today we have an episode of Mast Cell Matters, deep Dives in Mast Cell Activation Syndrome, or MCAS with our amazing guest host, Dr. Tania Dempsey, world renowned MCAS expert, highly sought after physician, educator to other physicians, researcher, and all around beautiful person.
Dr. Dempsey, thank you for being here. And which of your illustrious colleagues did you bring with you today?
Dr. Tania Dempsey: Well, I'm excited to have Dr. Donna Kirchoff here. She is, I'll give you a little bio on her and then we'll, we'll dive in. Dr. Kirchhoff is a developmental pediatrician. She completed her pediatric residency at OHSU in 1999,
where she was also chief resident. She spent the first five years of her [00:01:00] pediatric career practicing general peds in private practice, and then realized that her true passion was helping children with developmental and behavioral challenges. She then sort of, it sounds like she evolved and, and joined a team that did more developmental peds and then she did a fellowship in integrative medicine in February of 2016,
trying to understand how complimentary and alternative treatments combined with traditional treatments. One of her current areas of interest is determining which types of holistic, complimentary alternative treatments work best for specific developmental behavioral challenges. And I, and she definitely has an interest in mast cell activation syndrome.
And so I'm excited to talk to her today about the, the melding of, of all the things that she she looks at in children. Welcome.
Dr. Donna Kirchoff: Thank you for having me. I'm so, I'm just honored to be here. Thank you.
Dr. Tania Dempsey: Yeah. Well, let's talk a little bit about what you do. Talk about your specialty, you know, the types of conditions you're [00:02:00] treating and, and sort of how you came to learn about MCAS.
Dr. Donna Kirchoff: Sure. Yeah. So, I practice integrative developmental and behavioral pediatrics. And so what that means is I see kids who are having any sort of challenge in their development or their behavior, and I, I tell my patients actually that I'm kind of a medical detective, so my job is to figure out what's going on with them, if there is something going on with them that might be causing problems.
And if so, that helps us figure out how to help them. That helps my younger patients understand why I'm asking all these questions and examining them, right? And my. Interest in mast cell really came from a long experience starting in general pediatrics with recognizing that allergies, when they pop up, can really trigger mood and behavior issues.
So I, I joke sometimes that I can tell what the pollen count is by how many emails and phone calls I'm receiving about kids' behavior. Right. So not just physical, but mood and behavior.
Dr. Tania Dempsey: And actually, I mean, I would say that [00:03:00] we see that in, in, in adults also, right? So, what, you know, so let's talk a little bit about I guess, you know, your approach to MCAS
then. What, what, first off, you know, what's the youngest let's say the, what's the youngest child or the youngest age that you've actually seen MCAS in?
Dr. Donna Kirchoff: Well, I dunno that I would've diagnosed MCAS, but I mean, certainly even in young infants we can see eczema, atopy, you know, food intolerances, what have you.
So whether or not that's mast cell or a more simple allergy is hard to say. You know, as you may know, there's not that much studied on a very wide demographic of patients and that have mast cell. So there's pretty minimal information on pediatric patients and pretty minimal information on minority demographic as well.
There may be different information available for consensus one versus consensus two on different demographics. But with regard to consensus two, I don't know of any studies that look at youngest age or [00:04:00] typical pediatric age or presentation for mast cell activation syndrome.
Dr. Tania Dempsey: Not, not enough research, but again, I, I would think that you're, you know, you're recognizing features of it if not actually diagnosing it.
Dr. Donna Kirchoff: A hundred percent. Yes.
Jill Brook: We actually had Dr. Weinstock on last week with his grandchild, who he diagnosed mast cell activation syndrome in at a very young age, and
it made me wonder if the only way to get diagnosed that young is to have an expert like in the house, really familiar with everything going on. But I was shocked to see how young symptoms were popping up.
Dr. Donna Kirchoff: I would say it's not unusual for me to be suspicious of and diagnose it in the preschool age group.
Yeah. And on up. And I'm suspicious always of history in the infancy, but I don't see very many kids pre preschool. For, I, I don't see very many infants in my clinic. So it's not a population that I've thought very much about mast cell in. Now, [00:05:00] historically. Sure. My kid was always covered in rashes.
They were always throwing up after feeds. They didn't tolerate certain formula, like the history would suggest that it was present in infancy, even before I was seeing them.
Dr. Tania Dempsey: So history, we've talked about this quite a bit on the podcast. History is super important then, right?
Dr. Donna Kirchoff: Absolutely.
Dr. Tania Dempsey: So in the kiddos that you're, you're starting to see in the sort of preschool age range, right?
You're still kind of, you're still getting that history all the way back and starting to see that there were hints of it.
Dr. Donna Kirchoff: Absolutely.
Dr. Tania Dempsey: So then what is your approach? So the kid comes in and you know, with the, the, the parents, I'm assuming, bring the kids in and what are your, what's your, what's your approach in terms of trying to figure out, you know the why behind it, like, what's going on, why, why is MCAS even potentially a problem in this kid, what it's doing, sort of those types, types of things.
Dr. Donna Kirchoff: Well, I start, my detective work starts by asking quite a bit of the parents in that I have a very long intake form that asks a lot of very detailed questions [00:06:00] about the child's history and their, their head to toe
problems, development, what have you. The things that I'm looking for in that history that sort of raise my suspicion more are, are hyper-mobility, so people who are super bendy have a higher risk for MCAS. People who have symptoms of POTS or dysautonomia also have a higher risk. And GI stuff, anything. Reflux, constipation, diarrhea,
food intolerances. All that also raised my suspicion. And that's, that's been published in the literature, right? That those things go together with mast cell. The other things that I listen really carefully to is a history of being really sensitive to foods or meds or supplements or environmental triggers, you know. Goes crazy if there's fragrance or, you know, medicines just cause weird reactions at very low doses.
Or parents that have noticed that they, their kids don't do well with processed foods or food dyes. And then, and I think it's an important thing to sidebar to mention that two thirds of the average [00:07:00] American child's calories come from ultra processed foods, which are full of chemicals. And that is problematic for a lot of kids who have, twitchy mast cells, right? Those are much more likely to set off a mast cell activation issue than a whole foods. So, so that's that as well. There's a family history of those things that I just went through that'll trigger me to think about it, especially in a younger child. You know, long-term chronic, unexplained stuff.
Like, my joints always hurt. Always complaining and being tired. You know, the weird rashes. Just anything that's unexplained, chronic, and kind of inflammatory makes me think about mast cell.
Dr. Tania Dempsey: And then how, how successful are you at actually making the diagnosis based on the consensus,
two criteria in children.
Dr. Donna Kirchoff: I would say pretty successful. I have one lab in the Portland area that I really like to use that's really good at processing the specimens correctly. And you guys have probably talked about how difficult that is to get everything, you know, drawn into cold tubes and refrigerated right away.
And I do a lot of patient education too about how important it is to make sure that [00:08:00] the person who's doing the draw or collecting the specimens is following the instructions. So parents are very well informed when they go in. So I do get labs on everybody that I can, which is most of my patients actually that I'm concerned about
mast cell for. Worst case I just get urine. Usually you can collect some pee without too much difficulty. And, and then we try stuff. So we'll have the combination of, you know, symptoms that could be mast cell. And by the way, I do have kids that just have neuropsychiatric issues, right? Just mood and behavior issue, no other physical stuff.
And either they have positive labs or we just decide to try something that will stabilize mast cells and they do much better. So, you don't have to have all that other stuff to benefit from mast cell therapy for a neuropsychiatric issue or a developmental or behavioral concern. It just sort of raises the suspicion, right?
So if I have positive labs or really suggestive symptoms and or a response to therapy, then I will call that either probable or definite mast cell activation syndrome, depending. And I tell parents when I get the labs, look, this isn't gonna [00:09:00] rule it in or out. Because we don't, even if you do have elevated labs, we don't know that the symptom that is the problem is coming from a mast cell issue, right?
You might have a mast cell issue somewhere else that you're not really all that bothered by. It may not be behind your mood or behavior issue, but it's worth looking into and giving a, a try for, for for therapy.
Dr. Tania Dempsey: So what's your, what's your go-to? Where do you, where do you start in terms of treatment?
Dr. Donna Kirchoff: Yeah. So it depends on the, on the family and what their bandwidth is. But if they can, I have them do a whole foods diet for two weeks because I wanna eliminate triggers to the extent that I can. I don't have them take anything specific food-wise out of the diet unless they are suspicious of a particular food being a problem for the child based on previous response.
And at the same time I asked them to go fragrance free in the household. Just I wanna eliminate all the environmental and food triggers that I can. If there's a history of super sensitivity to medications or supplements or weird reactions, I will sometimes, although I don't do this very often during that trial period, compound [00:10:00] medications so that they're not getting exposed to additives or dyes in the medications that they're taking.
I don't usually do that though, you know, in the first couple of weeks unless there's a really strong history of or suspicion that meds could be contributing to the problem, or supplements. And then I'm asking during those times about other environmental triggers, you know, is there mold in the house?
Is there something that the child is being exposed to that could be a problem? Are there other family members that are not doing well in their current environment? Did everything start in the house they moved into. Those kinds of things. So that's the first two weeks. And then that gives us a lot of information.
Did everything get better? Okay. Well then let's start exploring adding things back in. What is it that, that got everything better? And then I, I do do other labs besides the mast cell labs to look for vitamin and mineral deficiencies because we know that a lot of the vitamins and minerals that we are just in a standard old multivitamin are helpful.
They're, they're mast cell stabilizers. And so I definitely wanna rule out deficiencies [00:11:00] because if there's a deficiency, we may need more than a multivitamin to correct that. So I'll check for, you know, zinc, B12, sometimes B6, folic, RBC folate. The zinc, I always check on RBC zinc. And then I'll check,
I have kind of a standard, you know, brain panel that I do that's treatable causes of brain difficulties, whether it's thyroid or celiac or iron deficiency or, you know, there's a, a whole panel of stuff that's separate from mast cell. But you know, you don't wanna, you don't wanna have anxiety from hyperthyroidism and be treating mast cell,
right. So I do my other panel along with that. And then once I've got those results, I'll start a, a multivitamin that's kind of broad spectrum. And then in addition to that, I may add some extra vitamin C or some other mast stabilizing vitamins depending on the child's presentation and sort of what else is going on with them.
And we'll give that a week or two. And then I usually add luteolin after that. I usually use the Algonot PureLut brand to [00:12:00] start with because the liposomal luteolin that's in that has been with, is part of a product that's been studied in kids with autism and found to be helpful for irritability.
So I know it gets in the brain, I know it helps with autism. The, the product that's actually studied is called NeuroProtek, and that's the the, the liposomal luteolin and plus quercetin and rutin. But I like to start with a single ingredient because if there's a, a negative reaction to that, I won't go onto the to the other.
And I also am, in my patient population sometimes kids don't do well with quercetin. So I wanna start off with just the plain old luteolin. What I do a little bit differently with, with that PureLut is I actually have them start off with just one soft gel a day and do that for a week and then titrate up to the dose that was studied, which is four soft gels a day.
And my clinical experience is that everyone has an ideal dose. It's kind of like low dose naltrexone, where everybody's ideal dose is different and it's unpredictable. You know, my 250 pound, 70-year-old can only tolerate one a day and he does much better with it. And if we try to bump it up, he [00:13:00] does much worse.
And my little 60 pound, you know, 7-year-old needs four and her parents are asking for more, right? So it's very unpredictable. But if you are taking other than your ideal dose, it doesn't work as well in my experience. And then depending on the response, some people do worse with that, that intervention, some people do better.
It's, but I like to try it first 'cause I know it gets into the brain, which is what I'm trying to target. And the then I'll try H1 blockers. Have kids go, you know, a couple of weeks on each one, see if there's any that works well for them. I recommend that they start at least with brand names, so that I am assured of the quality.
And then if they do well, then I have them try generic. Just making sure that it's equally effective. I'm assuming that they're able to afford that price point difference between generic and brand name for the first bottle. And then I'll add an H2 blocker if it's appropriate and or if there's persistent symptoms.
And then from there it's really individual. It depends on the patient presentation and how they're doing with those [00:14:00] interventions and what else is, is going on. If, if we do those things and then sort of do some more nuanced, individualized stuff and there's still problems, then I go back to the drawing board and look at environment and infection again as a potential, something that I've missed.
And then we, we, we keep plugging along.
Dr. Tania Dempsey: I love your approach 'cause it's really so similar to how, how I approach my, my patients. Because you have to keep on thinking about it. You really can't, you can't just go like full steam ahead and, and ignore responses, right.
There's a reason why MCAS is happening in patients. And you have to constantly ask the why and, and the, and the root. So I, what I'm curious about is in, in your practice, because you do deal with a lot of the, the brain stuff, right? The manifestations, developmental, behavioral, that kind of stuff.
How, how often are you seeing or how much do you treat PANS/PANDAS, autoimmune encephalopathy, [00:15:00] whatever the, whatever name you want to use for these, these syndromes, how much of that overlaps, with what you're, what you're doing and seeing.
Dr. Donna Kirchoff: My opinion is that there's a lot of overlap, right? Like that's that I, I think my, my opinion, and I can't point to any articles that support this opinion, is that having mast cell increases your risk to develop PANS and PANDAS.
That's my opinion. And I think we should be treating kids with PANS/PANDAS, we should be evaluating them for mast cell and treating them for mast cell in line with the treatment for PANS/PANDAS. I have had some clinical success with that, with feeling like luteolin in particular, which is, you know, helps with inflammation has been beneficial for some kids that have presented in a very
PANS or PANDAS like manner. I don't do a ton of PANS/PANDAS treatment. It's not my area of super specialty, but because not many people will, I'm sort of forced to, right? So I do have success you know, ferreting out infection, ferreting out mast cell triggers, and I really think we have to be looking at [00:16:00] both simultaneously for good outcomes.
Jill Brook: Do you mind just saying what it stands for and what it is quick?
Dr. Donna Kirchoff: So PANS stands for, I use it so often, I'm not even gonna probably get it right.
Pediatric Acute Neuropsychiatric Syndrome. Correct? Okay. And PANDAS is let's see, Pediatric Acute Neuropsychiatric...
Dr. Tania Dempsey: Disorder Associated with Strep.
Dr. Donna Kirchoff: So both are basically neuroinflammation that's thought to be due to an autoimmune response to an infection.
With PANDAS it's specific to strep and with PANS it can be anything. Virus, bacteria, maybe even mold, I don't know. Toxic exposures. So there's a lot of overlap, right? Because we talk about mast cells. So Claudia Miller, of course, has done this amazing research looking at the Toxicant Induced Loss of Tolerance or TILT.
So you get a toxic exposure, which could be mold. And then all of a sudden you've got raging MCAS. Well, that's kind of like PANS, right? I mean, [00:17:00] there's a lot of similarities between that. It's almost like we're using the same terms to describe the same things. So I'm very, very interested and hopeful that there'll be research looking at the overlap between PANS/PANDAS and MCAS, because I think there is a lot to be gained from that.
Dr. Tania Dempsey: I've done a number of lectures on it. I'm trying to, like you, I keep saying, you know, this is, this is my, you know, opinion. This is just based on patients that I see, the research that I've read.
Right. We, we need more research. But I've done presentations on that link between MCAS and neuropsychiatric disorders. There's gonna be, hopefully there's gonna be a conference. I know they're planning it. It's a, it's an autoimmune encephalopathy neuropsychiatric conference that I know some people are trying to put together.
And they want presentation on MCAS. I know that Dr. Afrin's gonna give one presentation. I'm going to give the presentation on the infection overlap between the MCAS and the PANS/PANDAS AE or [00:18:00] Autoimmune Encephalopathy. So, so people are interested. There, there's a, there's a need for this because obviously it's, it, it is something that affects a lot of our patients, whether they have a diagnosis, you know, that we say is PANS/PANDAS, or anything else,
because there are so many mast cells in the nervous system. Inevitably there's gonna be a lot of neurologic or neuropsychiatric symptoms. It's just, it seems clear to us. Just wish it was clearer to everybody else.
Dr. Donna Kirchoff: Well, they're the chicken or the egg, right? Whether the infection triggered them or they triggered the inflammation, right?
Whether they're triggered by inflammation or they're triggering inflammation, or it's a vicious cycle. Yeah, absolutely.
Dr. Tania Dempsey: So, you know, I'd love to talk a little, 'cause you mentioned mold a few times and, and chemicals and intolerance. So what, what is your, your approach to, to mold other than, you know, I, it sounds like early on when you're treating the patient, you are helping the family
explore whether, whether mold [00:19:00] is a, is an issue. How do you approach it? Do you test the child? Do you have the family test their home? Do you treat? What, what is your approach to, to mold as, as one area of toxicity.
Dr. Donna Kirchoff: Well, to be honest, I refer to people who are smarter than me in this area. I'm not a mold expert. The, what I have just started to do, I have a couple of labs that I've just started to use based on some, you know, lectures that I've attended recently from people who are much more experienced about mold. I'm not going to mention what they are yet 'cause I'm not familiar enough about them.
So I'm sort of experimenting with some of the, some of the lab markers right now. I have several colleagues that use specific mold plates and put them in rooms to see if mold grows. It's just kind of a very basic and cheap screening measure.
I can't speak to the evidence base behind that or how that compares to ERMI. Right? Which is the more scientific PCR, you know, use this dust wipe wipe up the dust and send it off for testing.
You know, I, I do [00:20:00] tell parents. That if they have any concern about mold, and maybe even if they don't, if they have the opportunity to stay somewhere else for a month, that maybe has a higher chance of being mold free to see if it changes their health and wellbeing.
Or maybe send their kids to live with grandma for a month in the summer. Even if they go on vacation for three, four weeks and their health changes dramatically to really pay attention to that. And as far as treating mold, that is beyond my scope. And I do, I do refer to colleagues for that.
Dr. Tania Dempsey: I love that you're doing that right, because you're, you recognize it. Which is, which is, you know, I think more than, than a lot of others who, who do the type of, you know, have the type of practice you do. So I, yeah, I, you know, admire that. So keep going.
Dr. Donna Kirchoff: It's one of my next areas. Yeah. Just I've, I've got mast cell down sort of, so now I'm going for mold. And mitochondria.
Dr. Tania Dempsey: I hear you. I hear you. Yeah. No, I think the mitochondria are, yeah, that's a whole other, a whole other like can of worms, but that, but, but very, very important in kids and adults.
[00:21:00] So, yeah. So what do you, so, so then sort of back to your approach with, with kids, whether it's MCAS or anything else that you do or focusing in on what you know, what are you, what are you seeing in terms of responses to, to the various treatments that you're, you know, initiating with them and what are you looking for?
Dr. Donna Kirchoff: Well, I can, I can tell story after story.
The two that come to mind are my very first kid that made me really start thinking about mast cells before I even knew what MCAS was. Was a kid who came to my practice for some developmental and behavioral challenges that were significant.
And one of the things that was difficult was eating. So very picky eater. Growing okay, but just a picky eater. And his, pediatrician, I think had started him on cyproheptadine. And his mom, it, it was, I have a bit of a wait list, a bit is probably an understatement. By the time he came to see me, it had been maybe like four or five months.
And that he had been taking the cyproheptadine and his mom said, I, I don't what to tell you, but like, all this [00:22:00] development has happened since over the past three, or like, we got on your wait list and then, he's had all this amazing gain and we don't know why. And so I was doing my detective work and trying to figure out what happened and the developmental gain started when he started cyproheptadine.
And so that's an antihistamine that gets into the brain for people that aren't familiar with it. And it's used to stimulate appetite and sometimes for migraine prevention, which is a whole nother maybe mast cell connection, right? But but but that really intrigued me, like why would this antihistamine impact his development?
And he's continued to respond positively over the years. It's been quite a while since I first saw him. And and actually he had labs done not too long ago to look for mast cell and had elevated urine PGD2, which by the way, a prostaglandin D2, for our for our listeners that aren't as familiar. And in my patient population, I'm finding that I almost, for whatever reason, never get elevated
serum or blood work PGD2. But I very frequently get elevated urine prostaglandin D2 in my population. [00:23:00] Whether that's because of the way our lab is processing them or whether there's something that's unique to pediatrics because there's not really data on these mediators on the urine tests in particular for pediatric patients.
Anyways, that's one of my favorite stories and my other story was my very first kid to use the PureLut luteolin. So I did IntellxxDNA testing in him or for him because we were really looking for something that would help with his irritability. And we had tried a bunch of different medications and couldn't really get where we wanted to.
And the IntellxxDNA testing looks at different genetic variants that are associated with risks for various inflammatory pathways and MCAS and autism and some other mental health issues, OCD, anxiety, ADHD. And so it can be helpful to identify different genetic differences, not mutations, but variants that, then can respond to very specific interventions. So each variant that raises risk has a list of evidence-based interventions that can be helpful. So without sounding like an advertisement for [00:24:00] IntellxxDNA, but the I don't do it for everyone 'cause it's expensive and not covered by insurance. But this particular child is an example of somebody who did not have any allergy or other, so he is not hypermobile,
he doesn't have dysautonomia, he doesn't have any funky systemic stuff. Maybe he has some mild seasonal allergies that they give some, you know, antihistamine for, but doesn't need anything more than that. Tolerates all foods fine. But luteolin came up in multiple inflammatory pathways for him. And so I was like, well, I don't know.
We could try this luteolin stuff. So I researched it. I found that the PureLut had been studied in autism, which he has. And and so we tried it and his mom was skeptical. She was like, we, she's been with me for a long time. I'm integrative. We've tried a lot of supplements that haven't really had a lot of impact for him, but she gave it a try and she came back and the irritability was better.
And I said, oh, it's working. And she was like, I think it probably was something else. And so I said, okay, well let's go, we had started with one, 'cause I'm really conservative. One out of the four [00:25:00] that's recommended on the bottle per day. And so I just, well, let's just try two and see if it's even better.
And so she came back for the next appointment and she was like, it wasn't the, it wasn't the supplement, it's, it's worse again. And I was like, will you humor me? And can we just go back down to one just to see, 'cause this is the first time I've ever used this. Maybe one is his magic dose. She went back to one.
It's been a year and a half. He's been great. And he tells me, I say like, why, why don't you have meltdowns anymore? And he says, quote, I just don't get angry anymore. I mean, it's not that he's, he's a teenager, he still gets angry. Right? But he's not having big episodes, so everybody's happy. One a day. So that was my first success with luteolin.
And what was really a learning experience for me about that particular patient was that he didn't have all the, he didn't have any other red flags, right? So there, he was not a person that screamed MCAS.
Dr. Tania Dempsey: I think that's a really great case and really kind of speaks to this population of MCAS patients that I see that don't have a lot of [00:26:00] systemic, other systemic symptoms.
But really just have brain effects, neurologic effects. And, and, and theoretically, MCAS is a multi system inflammatory syndrome. Right? So theoretically there should be multiple systems involved. And really sometimes when you dig deep, you'll find another system. It may not be something that they're particularly worried about.
But inevitably there's like some gut stuff, but it's not really, it's not major. They don't have a lot of food intolerances, but maybe they get bloated, you know, or, or maybe they're a little constipated. But there's, there are other systems, but there's one system for many patients that are, is just the predominant thing.
And that's why I think MCAS, at least in my opinion, is under diagnosed because you're thinking about, at least even people who are MCAS aware [00:27:00] are thinking about that like severe case where every system is involved and they have allergies and they have all those like red flags. Then these are the patients that don't, don't get put on MCAS targeted therapy. And they miss out. So that's such a great case.
Dr. Donna Kirchoff: And for this child, maybe the fact that he has to take iron to keep his iron levels up is 'cause of some gut inflammation. Right. That's MCAS derived. Right. I mean, so there are, you could always find something it seems like, you know?
Right. But yeah, I agree there it's a wide spectrum from multi-system to what seems like single system, but probably there's something else going on. And kids with autism have often trouble with interoception, which is like I tuning into your body's cues.
Might not realize they're hungry. Might not report a stomach ache, might, might not report an ear ache. And it's not that they're hiding it, it's that their, their brain just isn't processing that information. They might get super irritable but not know why or not articulate why. So, this came up maybe in one of the the questions that you had mentioned that [00:28:00] listeners have.
But the, that's a challenge with diagnosing kids with autism with MCAS is that they may not report accurately because of either poor interoception. Their body is just not telling, telling them the information they need to report accurate accurately what they're feeling. And also because it could just be their whole life experience with stomach aches, you know?
So I can't tell you how many times I've said. You know, when you ask kids about reflux, you have to say, do you ever taste vomit in the back of your throat? Right? And they're like, oh yeah. And I'm like, well, how often, like. Like 20 times a day. Right. You like, how has that always happened to you?
Oh yeah. Ever since I can remember and no one's ever reported it. Because it's just, their normal, right? They just think, well, doesn't everybody throw up in the back of their throat 20 times a day? Isn't that just how it is? Right. You know, so, or just doesn't everybody have a tummy ache all the time, or isn't everybody, you know, isn't it normal to poop once a week and have it really hurt?
Right. Like that's just their normal. So not just good with autism, but all kids, right, need more specific questions 'cause they just don't know what's [00:29:00] normal. Whatever's, whatever they've experienced is normal for them.
Dr. Tania Dempsey: That's a great point. Yeah. So, so important. So, you know, besides just the, the, the MCAS, which is a big piece of, of the, of the puzzle here in terms of treating them, what other,
what other treatments do you, do you use either either supplements, medications, or just other modalities. What else do you find helpful in, in helping the nervous system as a whole?
Dr. Donna Kirchoff: Well, and I, they, I think you just hit the the nail on the head there with the nervous system comment. So, we know stress triggers MCAS, so whatever we can do to relieve stress is helpful.
I shouldn't say we know, we know that stress can trigger mast cells, right? Maybe it doesn't trigger mast cells for everyone. But for a good number of people stress is a trigger trigger for mast cells, as I like to say, behaving badly. And the so there's so many modalities we can use from mind body stuff, so guided imagery, breathing exercises, there's even preschool [00:30:00] videos with Sesame Street on how to, you know,
breathe into your belly to calm down, right? So even little kids can benefit from from mind body techniques to calm their nervous system, which certainly is gonna help on many levels. There's you know, a lot of interest in vagal nerve simulation and how can we use the vagal nerve to, or the vagus nerve to,
to modulate the nervous system. There's all sorts of really interesting preliminary research coming out about using vagal nerve stimulation, both internal and external for autism symptoms, and maybe there's some impact on the microglia in the brain and neuroinflammation from increasing the vagus nerve activity.
And that can be done either through a variety of direct, you know, like, transdermal vagal nerve simulation. But it can also just be humming or singing or gargling or deep breathing or doing yoga or even the cold plunges right, are thought to activate vagal [00:31:00] tone. So the, the vagus nerve for people who aren't used to talking about it is your rest and relax part of your nervous system and it balances the fight or flight part of your nervous system.
And so, not only can the fight or flight part of your nervous system trigger mast cells, the inflammation that mast cells generate can trigger your fight or flight nervous system. And so calming that down from both sides can be really helpful. I think the there's so much potential for that
in our patient population. There's not quite enough out there for it to be standard of care yet. But a lot of promising, a lot of promising work out there.
Jill Brook: A few parents had specifically asked if you had any opinions about certain programs like DNRS program or Safe and Sound Protocol or the Gupta program. Do you have any opinions about whether those are safe or effective or anything like that?
Dr. Donna Kirchoff: I don't have any concerns for safety for the, the autonomic nervous system retraining programs like Gupta, what have [00:32:00] you. Those are a little broader than just the increasing vagus nerve activity or vagal tone.
It's the rare pediatric patient in my practice though, that can commit to the level of intensity and time required to participate in like the Gupta or the DNRS programs. So I haven't found the right candidate for that yet. And there's no pediatric research to support the use of either of those programs.
But for an older adolescent who's motivated, I wouldn't have any problem recommending looking into one of those programs. They would have to be motivated, and they would have to be older and cognitively, and attentionally capable, which is, you know, some of my practice meets that criteria,
but but a lot of kids that I'm working with would struggle to participate. I don't think there's enough evidence to recommend the transcutaneous vagal nerve devices out there yet, but I'm really hoping that will come soon. And I may actually not be aware if there are pediatric studies.
I'm not aware of them, but there may be just some coming out so recently that I'm just not aware of them yet. The, the two devices out there, so there's an [00:33:00] Apollo, which is a, a wearable device that uses vibration to trigger the vagal nerve that does have some pediatric studies. And some people do find that helpful.
And then the Safe and Sound Protocols also studied in children and uses the auditory system to increase vagal tone. And has been helpful for some kids in my practice. That's often used by occupational therapists and audiologists to help with that parasympathetic, sympathetic nervous system balance.
I like breathing and yoga and exercise for vagal nerve, and laughing, belly laughing. Like, like the more fun you can have, the, the more rested and relaxed you're gonna be. So I would rather than signing a kid up for a big intensive DNRS or Gupta program, I would like to see positive relationships, play with parents,
lots of laughter and joy. Because I feel like that's probably equally effective, especially at younger ages. To have that just, true pleasure in living is for all of us, very calming, right?
Dr. Tania Dempsey: Which we don't, we don't do [00:34:00] enough of.
And I think that, you know, raises the question of, you know, I sort of think about this all the time. Like, what's the why behind why do kids have so much vagal dysfunction or neurologic dysfunction? Right. And so how much of it is you know, environmental, which you brought up lots of, lots of environmental toxins and exposures.
How much of it is the, not just the toxins, but like the, the environment where they're, where they're growing up. The adults in their life, what the adults are going through, the stresses that, that those people are, you know, experiencing. And so I guess my question is about, you know, autism. How often do you see adults, the parents, have features that are similar in terms of maybe not, maybe they're not autistic, but they have some neurologic or neuroinflammation. How often do you see that in parents?
Dr. Donna Kirchoff: Oh, very frequently. There's often a parent that identifies in some way with the child that's just been diagnosed for, with autism, for higher, [00:35:00] especially for higher functioning kids, right.
That that says, ah, this explains why stuff was so difficult for me growing up, right. And a particularly a, a, a very emerging area of I guess diagnostic changes, women and girls with autism that present so very differently from boys. All the studies on diagnosis of autism were done on boys.
So we don't actually know a lot about how autism presents in girls with regard to like standardized assessments. We know we, there's a lot of, there's a lot in the literature just sort of, and discussion about it, presenting differently, but gold standard diagnostic tools are still all boys, boys generated.
So yes, absolutely. There are frequently parents who say like, yeah, you know, he's kinda like me when I was a kid. And there are certain professions where, you know, having a skillset and a mindset and sort of a strength set that is [00:36:00] consistent with autism is to your benefit. I mean, if you're a computer programmer, if you're an engineer, you know that having that very logical mind that can focus and, you know, do be interested in, in very specific sort of patterns, pattern recognition, right?
Everybody with autism is unique and different. Not everybody has the same skillset. But there are some professions that tend to draw more adults that have an autism phenotype, right?
Dr. Tania Dempsey: So what is the difference? What do you see in females with autism versus males? I'm curious.
Dr. Donna Kirchoff: So, women and girls with autism are more able to socially mask. This is a generalization of course, right? So you, this is all generalization, but my experience and, and that of my colleagues is that girls are able to figure out the social expectations by observing and copying, but it's not coming innately to them.
So they're able to be like, well, okay, Cindy's doing that and that's working, so I'm gonna try that. They're having to do the work to, to do the social. So there's a lot of social anxiety because the [00:37:00] knowledge isn't coming innately. It's coming by observation. They're also really good at masking
compared to boys. So, they will seem to be having fun and seem to be, you know, laughing and seem to be happy because that's what's socially expected, but may not actually genuinely feel those things. So, and I, I think it's in some ways harder for many girls that have autism because the social desire is often, not always, but often greater for girls to be integrated and successful and, and, and be socially engaged.
And, and at the same time they're really struggling. So that's really hard. So there's just some, some nuances and maybe there interests are not as, you know, classic autistic. They're not all lining up trains. Maybe they're really interested in leopard geckos, you know? Right. And that's all they wanna talk about.
But maybe there's another girl that's also interested in leopard geckos or their, their intense interests are more sort of pure age appropriate sometimes. So it doesn't stand out as much that they're having these [00:38:00] intense interests. But these are all generalizations and just my experience, of course not, not an attempt to say this is what girl autism is, you know, but it is tricky.
And, and I had a mom tell me like, oh my gosh, it totally makes sense why everybody else finds cocktail parties so easy, and I've always found them so hard. A really high level executive who's very successful and who I would've never suspected would self-identify as being on the autism spectrum.
It's just a super pleasant, wonderful woman who was very engaging and she was like, ah, this is why it's been so hard for me. When her child was diagnosed, she saw a lot of those same things in herself. I don't think she was ever formally diagnosed, but, but she saw a lot of, patterns that were similar and that led her great challenges, internal challenges, right?
She wasn't rocking in a corner or nonverbal. She was just really struggling emotionally.
Dr. Tania Dempsey: So, so interesting. I've had a number of adult female patients, women who are, have been recently diagnosed with [00:39:00] autism. You know, as, again, as adults in their twenties, thirties, forties. You know, like in the last couple years.
And so it's really, it's really interesting to me the things that you're saying because, you know, initially I was thinking, well, how, like, how is that even possible to go through life like that? But if you use the model of what you're seeing in males, right, that didn't make sense.
But now, now understanding what you're saying, it totally makes sense. But it's been very, very validating for these women because again, all these questions that they've had their entire life. Always feeling different, and all of a sudden now they understand.
Right. It's the same thing when we, when we diagnose MCAS, right. All of a sudden we're giving people you know, the, the answers to the, the why's behind, you know, why they feel this way, why they have this symptom, why they act that way. So I think, I think it's powerful, right? I, we have some colleagues who sort of, say, well, you know, why do you need to give people diagnoses, right?
Like, like, we [00:40:00] don't wanna, we don't wanna label people, right, because there's some downside to that. But I actually think if you look at it in the positive, sometimes it is helpful. Because it does, you know, again, validate.
Dr. Donna Kirchoff: Where are the strengths and challenges. Gives you a roadmap for what do you need to do to best support this person based on their strengths and challenges?
And where are the challenges coming from? That's the detective work, right? Are you not socializing because you're inattentive or because you're anxious or 'cause you just don't get it right? Like, and if you just don't get it, then you need some instruction.
Jill Brook: I'm wondering how official is the connection between mast cells and autism .
Is this just a couple people noticing? Maybe some people have both? Or do we think that the mast cells actually play an important role in autism?
Dr. Donna Kirchoff: We know there's a connection between mastocytosis and autism. So we know that if a, if a child has mastocytosis, they're more likely to have autism. And we also know that allergies and atopy increase your [00:41:00] chances for autism. So no one has looked at the consensus two criteria for mast cell activation syndrome and autism,
but I think it's very safe to say that there's a connection just based on mastocytosis and allergies, both having been studied and being correlated with a higher risk of autism. Yes. And we know that there's certainly at least some autism has some neuroinflammatory component. I don't think we know what the pathophysiology is for autism for everyone or even
pretty much anyone. But there is a lot of evidence that neuroinflammation tracks with autism. And in fact, there was a study that came out just last year that looked at inflammatory mediators and autism, and inflammatory mediators in mast cell, and found a lot of cross over. A lot of the same inflammatory mediators are seen in autism that are seen in mast cell.
So that was a really interesting study too.
Dr. Tania Dempsey: And I think, and, and Dr. Afrin has, he did publish a a [00:42:00] paper on the neuropsychiatric manifestations of MCAS.
I don't know if he specifically talked about autism in that paper, but I know that he's talked about autism and the connection with MCAS.
Dr. Donna Kirchoff: I'm just starting to think about and explore looking at the impact of changing to a whole foods diet in a school for kids with autism.
So we're just starting to talk about it. So that's my, my most recent iron to be close to the fire so to speak. But I think it would be really cool if we were able to assess the impact of just decreasing processed foods and really looking at what the challenges are to doing that because kids with autism have a higher incidence of feeding disorders to include avoidant, restrictive food intake disorder.
You know, just being very particular and picky about food, not just behaviorally picky, but really being very anxious about taking in foods that they're not used to. It can be sensory, it can be sort of, anxiety triggered rigidity to anxious about trying new things kind [00:43:00] of thing.
And there can also be just very specific sensory things. I don't, you know, certain textures or even appearances of food that are unpalatable. More, more frequently in kids with autism. To be clear, you don't have to have autism to have a feeding disorder. Right. But, or vice versa. You can have autism and eat a very wide variety of foods but there is a higher incidence of more restricted eating patterns in the population that I serve.
Jill Brook: We have one other question from a parent that I wonder if I could run by you. Question was whether the pandemic could have made kids' immune systems more susceptible, either via exposure to COVID or through drastically reduced exposure to common pathogens during the lockdown.
Dr. Donna Kirchoff: Yeah. So, I do think that the the lockdown had an impact on kids' immune systems and certainly not being exposed to pathogens meant that when we all started [00:44:00] mingling again, there was a bunch more illness all at the same time. Right. So having multiple illnesses all at the same time is a little bit maybe, maybe rocks the immune system a little harder, right,
than, you know, having it sparsed out. I can't support that with any paper or any evidence or anything, but just sort of a thought of, huh. A lot of pathogens all at the same time as everybody's getting back together and mingling that your immune system is getting sort of pummeled with, might be a different
experience than having a more gradual exposure.
Or it was COVID or just exposure to COVID, right. Yes. So yeah, certainly long COVID, you know, as a result of COVID infection, which we're seeing in a good number of children and adults impacts the immune system and is associated with mast cell activation. So absolutely on the COVID exposure, absolutely on the change in,
in how they were exposed to pathogens. I don't know that not being exposed to pathogens was so terrible, other than that, there isn't natural immunity when you're getting exposed to all of them, you know, when you go back to school. But there are two other ways that I think the pandemic [00:45:00] influenced our, our, our health and well being, and one is the stress that we experienced for so long, both children and adults. That
absolutely had an impact on our immune system. How could it not have? There's the very rare individual that was very introverted and relieved not to have to go out. So there were some people who did better during COVID because they were like, oh, thankfully, no, nobody's expecting all these things of me.
Right. But most people had a higher level of stress during the pandemic. For, for, for many, many reasons, right? Financial, relationships, you know, limited opportunities for everything they do that made them joyful, right? I mean there, there, there were so many stressors. But the, the second thing that I think is worth thinking about with regard to impact on the immune system is that kids were in one environment
all the time, indoors. Often in tight houses exposed to the same toxins all day long versus going to school and being on the bus and coming home and not that there aren't toxins at school and on the bus. Right. But, but you're at least, you know, getting a little bit here and a little bit there.
So for a [00:46:00] house that had a mold infestation and now kids instead of being there, just, you know, half of their life are there 24 7 for two years. I, I'm exaggerating, right? But that, that, or, or had a fumes from paint or whatever sort of chemicals were worked with at home. Cleaning products, paint, home projects, glues, fragrances maybe.
Maybe there was a house that used a lot of fragrances and going outside and going to other people's houses and going to school was a break, the body's break from that. So I do think there was potentially, for some kids there was less exposure to toxins, right? And some households and some kids had more because of the, the lockdown and just the, the relational stress, right?
Kids, kids take on their parents' stress. Parents were stressed. That made kids stressed. No matter how much parents tried to hide it or protect their kids, kids are a barometer of the family stress level and family stress impacts kids' nervous systems and immune systems. So I think that was probably the biggest hit from the [00:47:00] pandemic was the stress that impacted everyone.
Dr. Tania Dempsey: That's an excellent explanation. I, I think you hit the nail on the head, on all, on all accounts. I, I think my opinion's the same. I think we're still digging ourselves out of that hole, in many ways.
Dr. Donna Kirchoff: Absolutely.
Yeah. It's got long lasting effects, right? Trauma sticks with you.
Dr. Tania Dempsey: Well, this was amazing. Thank you having you so much for joining us and, and giving your perspective.
Dr. Donna Kirchoff: Thank you so much, both of you. I
really appreciate the opportunity to come and talk to you. Thanks.
Dr. Tania Dempsey: And where can people find you?
Dr. Donna Kirchoff: I do not have a social media presence. It's a goal of mine to become more available for, you know, learning.
Right. So I'm trying to put together a library of stuff so that I don't have to say it again and again. I can just be like, there's a video. You can, here's the link. But I I do have a website, donnakirchoffmd.com. Where if I, once I generate some content, there will be links to it there.
Dr. Tania Dempsey: Okay.
That's a good goal. All right. They'll, they'll [00:48:00] watch for you and you'll, you'll get there.
Dr. Donna Kirchoff: I will get there someday. Yes. Yeah. Yeah. Thank you much, both of you. I appreciate it.
Jill Brook: We are so grateful to have both of you brilliant, busy, wonderful people here today.
Thank you so much, and okay, listeners, that's all for today. We'll be back soon with another episode, and until then, thank you for listening. Remember, you're not alone, and please join us again soon.
