Episode 283: Overcoming Allergies with Tolerance Induction Program (TIP) with Dena Freedman-Muchnick

Hi and welcome to episode 283 of the Untether Podcast. Today we have Dina Friedman Muchnik joining us. Dean is a licensed speech language pathologist with over 24 years of clinical experience, as well as a certified lactation consultant. Dina is the founder and Clinical Director of Myofunctional Spot, a private practice specializing in the treatment of orofacial myofunctional disorders in children, teens and adults. She's also the founder of Lactation Spot, which specializes in infant feeding for babies under 12 months of age. Myofunctional Spot and Lactation Spot are located in Davie, Florida. Dina earned a Master's Degree in Speech Language Pathology from Nova Southeastern University in 2000. Prior to that, she earned a dual Bachelor's degree in Speech Language Pathology and Audiology from the University of Florida in 1997. Dina has worked as an SLP in the areas of speech, language, voice, feeding and swallowing for over 24 years. She's practiced in various clinical settings including Miami Children's Hospital, acute inpatient rehab, outpatient clinics, public and private schools from kindergarten to 12th grade, and in private practice. Throughout her career, Dina has gained extensive experience with various populations and developmental medical complexities that impact speech, language and feeding development from birth to adulthood. However, her expertise and true passion lies in addressing OMDs and numerous symptomatic presentations in patients across the lifespan from infancy through adulthood. Dina created the tiny MYO, an early intervention program for children ages 1 to 5 that targets speech, sensory, early feeding and oral motor skills while proactively addressing any early red flags of OMDs. Myofunctional spot specializes in tethered oral tissues, pre and post frenectomy, tongue thrust, sleep disorder, breathing, TMJ pain and dysfunction, early feeding, voice disorders, fluency and articulation. All Myofunctional Spot clinicians are licensed speech language pathologists who have chosen to focus their career in treating OMDs. They're licensed to treat clients in the states of Florida and California. Then they collaborate closely with a network of medical providers to help improve client clinical outcomes and their services are provided in clinic or via telehealth. Dina lives in Cooper City, Florida with her amazing husband, two teenage babies and four doodle fur babies and her free time. Dina enjoys visiting local farmers markets, practicing yoga, cooking organic gluten, dairy, free meals, harmonizing to Broadway music with her husband and daughter, thrift shopping, traveling and chasing the most beautiful sunsets. Dina is so grateful to be able to follow her passion and considers it a privilege to help the family to allow her to be part of their myofunctional team. That said, today Dina and I are discussing her own child, so let's jump in. Quick Disclaimer all information, content and material of this podcast are the opinions of the speakers and is for the informational purpose only and not intended to serve as a substitute for the consultation, diagnosis and or medical treatment of a qualified healthcare provider. Welcome to the Untethered Podcast. I am your host, Hallie Balkan. I'm a certified myofunctional therapist, feeding specialist, podcaster, business owner and mentor. This podcast is all about getting your questions answered and collaborating with colleagues to bring you the most up to date information in the orofacial myofunctional therapy, airway, tethered oral tissue and pediatric feeding therapy space. If you're new here, I challenge you to keep an open mind and join my mission to spread this message far and wide. If you've been around since June 2019, thanks for being a loyal listener. As we jump into today's episode, remember to listen with correct oral rest posture, tongue up, lips closed, teeth apart, breathe through your nose. Let's get started. Dena, welcome to the podcast.

Thank you for having me.

Yeah, I'm excited to finally chat with you. It feels like face to face even though you're in Florida. We probably could have, you know, gotten together in person, but here we are virtually having a chat. And I know that we also connected. It was funny, right? We connected a while back and then I think we put two and two together and realized like, your husband was a canner at my daughter's preschool and I was like, wait a second.

Listening to you for months prior to that.

So funny. So, so funny. So small world. I love that. Love that. And I'm excited too. Cause I know today you're going to share a lot about your son's experience with allergies and the program that you all are doing right now, which feels very parallel to what's going on in my life. But I know that what you're doing is a lot more intense. So on that note, I'm going to turn it over to you to share a bit about like his history and kind of what even brought you here to where you are with this program that you're doing.

Sure. So Jordan is my son. He's turning 18 next week. A senior in high school. He's had these anaphylactic allergies since he was one. We figured out that he had it. We were at the zoo one day and he, you know, back then, all those years ago, they would recommend to avoid peanut and avoid nut. So we were at the zoo, he had never gotten nuts and I gave him uncrustable. Actually, I ate the uncrustable, kissed him on the cheek and his whole face blew up. And I was like, wow, okay, this is something. So, you know, it's something that we've been just told to avoid. The conventional advice from all of the allergists and immunologists that we visited over the years is always just avoid the entire group of foods. Take an EpiPen if you can't breathe. Good luck surviving, just send you on your way. And there's really no breakdown of which allergens are more or less, you know, which ones will cause a hive, which ones will cause anaphylaxis. And it's. There's very little guidance or treatment other than avoidance and good luck. Yeah, so that's really the way we operated up until about two years ago. My best friend has her daughter in this program and I was hearing her talk about it and got interested and looked into it and here we are.

Amazing. So tell us more about like what this program is. I know you mentioned like you're flying from Florida out to California for the treatments. So that, that already is a big commitment, so.

Commitment, yeah, it is for, is not for the faint of heart. It is more for those really anaphylactic allergies, life threatening allergies. Some people do go to this program for eoe. Are you familiar with.

Yeah, yeah.

So they, they really are a. It's owned. It was founded in 2015 by Dr. Rondoa, call him Dr. R. I've never actually met him, but he is the one who formulates every individualized plan for each client. So I am not any in any way affiliated with this program. I'm going to do my best describing it from my perspective, from a patient, from a mom. So I have some notes, try to make it sound like. So I'm relaying the information accurately, but from my perspective, he's a, his background is in transplant, immunology, allergy, pulmonology and internal medicine. And he actually, it sounds weird, but he uses AI to formulate these plans he has. And you know, there's more information online, but basically you come in for your first appointment. The clinic is located in California, it's in Long beach and San Diego. And you basically have an intake online where you're talking about your case. They get all the information and then you have your onboarding appointment where you come in and they gather a bunch of data from you. So it is a very intensive blood work lab from a specialized lab that he uses. And they're looking at things that. It's really the most involved blood work for allergies that's out there that, that I know of. And they're looking at everything that he could be allergic to. But what they're really able to tell you from this blood work, which is not covered by insurance, is they're able to tell you to break down every single food and allergen and tell you if he will, what his reaction would be.

Oh, wow.

Yeah. So for, for our, for his whole life we've just avoided all tree nuts, all peanuts and even legumes. He has the, the chickpea and lentil and green pea, we've avoided it all. And always like every time my phone rings, it's that, oh my gosh, something happened. It really is scary. But they're able to break down and tell you, okay, for green pea, he might just get a hive for, for this night, he might have a stomachache. And these are the ones he will 100% have anaphylaxis to.

Wow.

Yeah, it was, it gives me chills.

Like I've got chills for that.

That's amazing. I, it is amazing. I cried the first time he sat in that office and ate a cashew. I'm like, you can eat cashew? Oh my gosh. Yeah. So, so basically, you know, it's different than oral immuno. Oral immunotherapy.

The oit. Uh huh.

It's different from oit. OIT leaves you. You go through the whole process and it's exposure therapy and it leaves you bite safe. So if, God forbid, you're out at a restaurant and you have a bite of something or you have cross contamination, supposedly it leaves you safe from that. This program, you know, you go through the program and everyone's length of time is different, but the clients graduate free eating their food, they're free eating their allergen. They're, they can't call it a cure, but it's as close to a cure because you're spending so many years building up your tolerance to the proteins and the molecular structure of the proteins that are similar to the proteins you're allergic to. By the time you're introducing the allergens, you've already built up enough of a tolerance to the actual allergen. And yeah, you're, you're graduating fully able to eat your allergen actually in remission. Wow. Wow. Yeah.

That's amazing. So I'm like, as you're saying this, right, I'm sitting here imagining how they introduce, right. Is it like, are they giving you specific things that you then feed to your child on certain dates at certain times kind of a thing. And you have to like follow like a very programmed type of introduction for each allergen. Like I'm guessing one at a time as well. So you know what they're reacting to. I mean, what does that look like?

Exactly. So for example, if a child is anaphylactic to dairy, they might start that child on introducing foods that are similar to those dairy proteins, like denatured goat's milk or camel milk or sheep's milk. And the way it starts is you, your first visit, like I said, you're getting all of this blood work, you're getting skin testing on your back, you're getting a patch test which you wear for 24 hours. And that tells you if you're going to have GI symptoms to certain allergens, there's a fourth one and a lung function test. So that's your first appointment. Your. It's called onboarding. And you do that, you're there for about two days. You don't get those results or your plan for about three to four, two to three, maybe four months later.

Oh, wow.

Yeah, there's a. And I was actually on a wait list to get into this program. I was on a year long wait list. They don't have that anymore. They've really, really grown. But yeah, so that's really. The first appointment is gathering the info, then you go back and they call that your launch appointment. And they sit down, they show you the actual chart of your child's allergens. It's long and it starts with the ones they're just maybe sensitive to. Maybe, maybe you've always noticed your child has a stomachache and you can't figure out what causes that or maybe they're sneezing, they get congested with some things that's all the way on the left side of the chart and then it just progressively moves over all the way to your anaphylactic foods. So I was shocked because there's many nuts he's been able to eat and I had no idea. Now I don't know what would have happened if he ate them, but we just were in full avoidance. Yeah. Um, so they, they intro, they start all the way in the safe foods. And I would say we're entering our second year now. The first year he was really dosing and I'll explain that later. But he was dosing foods that he's not really allergic to, more sensitive to. But those foods are going to help him build that resistance to the foods that he is allergic to. So they give you two to three, maybe four foods per cycle. Each cycle's about nine to 12 weeks. And yeah, they send you home with different forms of the allergen, mostly gelatins, gummies, with a very specific dose that they know will be safe. And every week you increase that dose. We call it up dosing. You increase every week until your cycle's over, typically nine, 10 weeks, you go back to the office and they challenge those foods.

Oh, fun.

Yeah.

Have there been any challenges that did not go well?

So far he's doing really well. But like I said, we're just entering into the, the scary part of the program. Scary for me, but it is such a safe program. They don't send you home with anything that they aren't sure that he will be okay with. But still, it's scary. The first time I gave Jordan a peanut gummy, I was like holding my breath for 15 minutes.

I. So I actually had a peanut allergy that I grew into when I was 19 and grew out of six years later. And I came to learn that, like, if you're not born with certain allergies, you can grow into them and you can also. They say they typically come in seven year cycles, which was like totally new. I had never heard this before and I was like, what? You can grow in and out of allergies? I've only known people who've had allergies like their entire lives. And then, you know, in feeding therapy, as we both know, you get a lot of allergy kids and you're just like, you just fully avoid all things. Right. But I think what's been interesting about Lily's program, and I'm not going to talk too much about it right now because I want you to keep going with, with this program that you're doing. But I think what's been very interesting is in her program, the way that they address certain allergens and the way that we work towards her, like dairy allergy, for example, her cow's milk protein allergy is by first laying the groundwork for other things. And so like calcium and even vitamin C and like these different things that I was like, oh, we have to actually address that and lay the foundation before we can ever really address the actual allergen at hand. Because it's all tied into how the immune system responds and so I'm, like, getting this same feeling as you're talking about, kind of like up dosing and the certain items, you know, that you talked. Talked about, like what you're more sensitive to. Right. You treat that first versus the actual allergic response as the other immune response that, you know, I'm sure we'll talk more about. But. Yeah, so continue. But I mean, my other question, too, is, like, I'm sitting here going, so I'm sure you've had an EpiPen his whole life. Right? And probably in several different locations between home and school, and everywhere he goes, is that something that you've had to use at all? It sounds like. No. Sounds like it's been.

So, again, we were just. We never got a straight answer from all of the allergists that we spoke to. And I don't know if this has been your experience, but we had some. We were seeing, you know, immunologists at Joe DiMaggio and, like, very well respected physicians. Some would tell us if he. If he ever, you know, complains of a symptom, just give him Benadryl. Start with Benadryl. Some would say, do not part with Benadryl. That masks the symptoms, it masks the escalation, and then it can get to the point where the EpiPens don't work. We had a lot of varying advice. So I will tell you, there's at least five times that I can think of where he was absolutely having anaphylaxis. Should have gotten an EpiPen, and we were just giving him Benadryl and waiting, which is the worst thing to do.

But thank goodness he's okay.

You never want to wait, wait for escalation, because EpiPens are most effective when they're used early, you know.

Yeah, yeah, yeah. No, I think that's one of the most frustrating things that we experience across medicine, especially in pediatrics, but across medicine for peds and adults, where you just. You could go to five different people and get five different recommendations, or you half say one thing and the other half say another, and you're like, who do I listen to? Like, I'm coming to you for guidance and advice. Yeah, I'm back at square one. Like, I apparently need to figure this out myself, and I did. Yeah, and you did.

Look at that.

As did I.

Here we are. We have to be our own advocates. It's just like with Mayo, right? It's. You want to treat the underlying issue of what's going on, the root cause issue. You. You can throw a million band AIDS at something, you know. But until you're addressing the root cause, which with food allergies really is an immunology response. Yeah. You're not going to get anywhere. And it's just. For me, it took me about two years to really decide if I was going to enter this program because it is a commitment. And I'll, I'll get into that. You know, it is not for the faint of heart, but when he was about 16, I was thinking to myself, I have a small window to fix this. They don't accept. I think they, they accept up to 18, but if you're in the program before 18, they will let you continue. There are lots of kids in college dosing themselves in the dorm.

Oh, okay.

Yeah. So I finally just took the leap.

Yeah.

And it, it's a big leap. But there are worse places to have to visit than Long Beach, California.

That's true. Not the easiest place to get to, surprisingly. From South Florida. I've tried.

Yeah. Program is called. I don't know if I said the actual name of the program. It's called the Food Allergy Institute. And the program itself is called the TIP program, Tolerance Induction Program. And they have their patients travel from 50 states and 22 countries. So I'm far, but I'm not the farthest.

Yeah, yeah. So what is like the investment? I mean, obviously there's a large time investment. Is there a financial investment in this as well? I know you said some things are not covered by insurance. Is anything uncovered?

The appointments themselves are typically covered. It depends on your insurance. We have United, and that's one of their more covered insurance companies. But when I say the appointments, I mean literally just the visits. You pay a copay. And the visits are able to be covered because they are, they are medical visits. They're monitoring your child with blood pressure and they're monitoring oxygen and they're, you know, those are covered. The program itself does have some uncovered expenses. So basically it's blood work. Like I said, this big panel of blood work, very specialized blood work is not typically covered. There are some insurance companies that do cover it and I was actually able to receive a grant the first year that covered it. They, they provide you with a bunch of companies that really do provide grants and it was fairly simple, but I didn't get it this year. The blood work is 2500 a year. So right off the bat, that's a pretty significant investment for most people. After that, the only other out of pocket expenses are the quarterly FEES, which are 1200 a quarter and that covers the gummies that they give you and all of the other protocols of that program. So. And the travel. The travel is really the most significant part. You're traveling out there four to five times a year. Each visit's anywhere from two to five days. So.

Yeah. So you're talking easily like $7,500 ish before travel per year. Yeah. How many years is this? I think you mentioned it takes a couple of years to complete the program.

Yeah. So when they give you that initial pro treatment plan that Dr. R has created for you, it tells you how many appointments they need. So I think Jordan was. I think he's 11 appointments, and we've completed. We're heading out in September for our fifth, so he's, you know, not halfway there yet. And I have heard of many who end up needing to add appointments. They don't really know how your child's going to respond until you start. Peanuts, a tricky one. Dairy is a tricky one. And so, you know, I would say we're hoping for three years, but kind of by the time we get there, if we need another year where you're gonna just go with, you know, however long it takes. But I will say the benefit of the program that I like is that you're building tolerance the whole time. So at one year versus three years, he may have built up enough tolerance where he may be less. Less. Less sensitive to cross contamination, let's say. And restaurants might be a little bit less scary if he's already built up three years of tolerance.

Yeah, yeah, that's. I mean, that's. At least there's that major benefit. Right. Because I know even as somebody who's. I don't have a. Well, I don't have a gluten allergy, per se, although I just had all this extensive blood work done, and I'm being told that I do, in fact, have. My body cannot process gluten, like, period. And I was like, even the gluten and the flour I buy from France and Italy, she's like, no. I'm like, okay. Whereas my youngest one, who's also working with this functional medicine doctor, is like. She's like, she can tolerate it. Like, we didn't do blood work on her. She's like, but she's not you. Like, we're doing other things to heal her gut. And she's like, we're trying to prevent her from getting to where you're at. And I'm like, got it. Okay. So. But it's fascinating to me because I've Gone to like, Italy and France and I've eaten there and I've felt totally fine. But that's probably because all the other things that my body doesn't, like, weren't reacting and so I could at least manage, you know, the gluten, even if my body doesn't love it. So. So that's been fun.

But, yeah, no, it's the summer and I'm the same way. I can't eat gluten. I'm actually grain free at this point and dairy free. Yeah. You, you, you want to justify and you want that bread and pasta in Italy, but you might feel fine when you're eating it at the time. But it's, for me, it's what it's doing internally and the inflammation that it causes that.

Yep, yep.

Just happen.

Oh, yeah. Like, especially two to three days later. Like, I hear at least like, I'm a balloon. Like, like my pants are tight, I fatigued, I don't feel well. Like all the systems, like, bloating. Yeah.

And so my ankles were. Would get swollen. Yeah. Your just body is telling you no, but you're saying yes. Yep.

Yep. Yeah. It's so fun. Yeah. Functional medicine. That's a whole nother podcast for another day. I'm like doing all these things right now and I'm like, I'm doing all the things and I feel like nothing is working. I mean, I'm feeling a little better most of the time, but to be like dairy free, gluten free, and low histamine is. I know we were chatting before we recorded. I'm like, it's just impossible to eat in a restaurant. And in, you know, I'm like, once in a while I do want to just not have to worry about the food coming out of my kitchen. I want to be able to go somewhere else and eat and not have to worry about feeling like total crap afterwards.

Yeah. On dealing with a functional doctor as well. And it's definitely a journey. It's one of those things where, again, you have to advocate for yourself. All these symptoms, they start off small, but if you don't address internally what's going on, you don't know what it can lead to.

Yeah. Or you even try to. But like, you know, you go to different providers and nope. Everyone's like, you're perfectly healthy. What are you talking about? You're fine right now. Years later, it snowballs. And you're like, I've been saying for years that, like, I'm bloated, I'm tired, I am one person's like, it's your adrenals. Another one's like, it must be your iron. And I'm like, all my blood work looks good.

Right? Within the.

Right within their range. Yes.

Yeah.

Well, correct. Correct. Yeah. It wasn't until I had, like, low platelets that I didn't know that I had in pregnancy with Lily until delivery and quickly thereafter. But with Mia, I knew that I had pregnancy induced itp and like, my platelets dropped to. From, like, low normal, like low, low, low normal, like right here and not being normal to, like, unhealthy, like, not normal. Needing to be on steroids in pregnancy to have, you know, any type of procedure if needed. But yeah, I was like, something, something seems off here. Like your body shouldn't be, like, attacking cells and like, platelets shouldn't be, like, dangerously low. And, you know, so that was one of the things that I finally. I feel like for the first time in nine years, I said to this functional medicine person and she's like, yeah, I don't like that. We're going to address that. I was like, oh, thank goodness. I was like somebody who actually understands that, like, that's part of the bigger picture. And all these other things that look normal. Like you said, like, within the normal range, but this is low. This is high. Like, homocysteines are high and platelets are low and all these other things.

Yeah. Addressed. Yeah. I've. I'm gallon with the same thing I've had. I've been through several different functional doctors and I always am able to take one. One good thing that I learned from each one. I haven't found one person yet that really has that vast knowledge in all areas. So I'll have to get that. I'll have to find out who you're working with.

Yeah, yeah. I mean. And the verdict's still out. Like, I feel like I do feel a lot better, but I don't like being told that I'm gonna have to be like, gluten free, dairy free, and low histamine for life. Like, that doesn't sit well with me.

And hopefully the goal is getting your body able to tolerate that. And that's what I.

Right, right. That is my goal. I mean, she basically has told me, you're doing all the right things. You're like the healthiest person that I've worked with. I'm like, that's not what I'm like. I do wanna hear that, but I don't wanna hear that. You know what I mean? I want this to be like, A more clear. And anyhow, anyways, but progress is being made. We did a GI map test and everything as well, and that came back, like, mostly pretty good. But there are some things we can work on. So, you know, I'm like, just fingers crossed that everything I'm doing right now leads to me just feeling better all the time.

I will, I will stay in touch with you about that.

Yes, yes, we should connect on that for sure. So, okay, so back to the program. I feel like we've. Yeah, we've talked quite a bit about, like, what the treatment looks like now. When do you actually get to, like, introduce certain foods into your regular diet? Like, what does that look like?

So when you have your launch appointment, like I said, they send you home with your. You're trying, let's say three or four foods. And for Jordan, since his main allergens are nuts and peanuts, they started him with feeds. So there are various seeds, chia flax, sunflower seeds, and those seeds apparently have the same, you know, similar molecular or protein structure to his. His allergens.

Interesting.

So, yeah, you. You start, you take. Let's say you have four. You eat a gummy and you wait 15 minutes and you're watching for a reaction. You take the second gummy, wait 15 minutes. 15 minutes. So it can take an hour to dose every night with. Wow. Teenager. To get him to stay with me for an hour and do it at the proper time. It's been. That's been a challenge. He's, you know, he likes to stay up till all hours of the night. He's out with his friends late, and they do want you to dose before 10. You know, your body, your. Your cortisol can be a little higher after 10. And there are different reasons that you could be more likely to have a reaction. So it takes about an hour to do the dosing, and then he has to rest for an hour after. Um.

I can see how this could be challenging for a teen who's like.

Or challenging for a little. Little one. Yeah. You know, and he doesn't have to lay down necessarily, but he can't go take a hot shower right after dosing. He can't go play basketball right after dosing. So he has to kind of let his body be calm. And in fact, when you go to the appointments and you're challenging these foods. So let's say you've been dosing for 12 weeks, you fly back out to California and you go to the clinic and you're challenging those four foods the way they challenge it is they have him eat double what he's been eating. So whatever that milligram. If he's been doing 4 milligrams of sunflower, he's going to challenge 8 milligrams. And they walk him next door into the little gym and have him go on the treadmill for five minutes. They want his heart rate up and they. They almost want to try to induce a reaction, make sure if he does not have a reaction after that he's cleared. How safe to eat those foods? And then those foods that he clears and passes moves to his maintenance food. So maintenance is those are foods that he has to eat every day so that. That's done in the morning. Morning maintenance. He eats those foods every day. And there's no timing with that. He doesn't have to wait or, you know, he's technically clear to eat those foods, but you have to maintain them in your body. You have to maintain those levels of proteins in your body every day. So we've been through again, like I said, this is our fifth appointment. He's had four rounds of foods. He's currently eating, like 12 to 15 different foods in the morning. And it's small amounts, but it's a lot. We're at the point where he's really. He's kind of struggling to eat these foods every day, which is expected. Yeah. Our next appointment, they do the blood work again. He's. He's due for his annual blood work, and hopefully the blood work will show that he's really, you know, reduced the levels and some of those foods will drop off, and then we just keep going. I. My friend is a year ahead of me in the program, and her daughter was severely, severely anaphylactic to dairy, eggs, mustard, and a few other things. And she's eating all of her anaphylactic foods, dosing them, but it's amazing. Yeah, amazing. That's.

That's a lot. I can also imagine that eating those different foods every single morning.

Yeah.

Just probably.

You can put them in a muffin, you can bake them in a pancake. They're small amounts. You can blend them in a smoothie. There are ways around it, but my teenage son just wants to chug it and be done. He doesn't. He's working out. He's watching his carbs. He doesn't want a muffin or a pancake. So.

I got it. I got it.

Yeah. The pros and cons to starting this program with a younger child, obviously. Yeah, things will probably be easier. And some things would be More difficult, you know?

Yeah. But also it's, it's, you know, I can imagine like having a child who's like, super picky and trying to do this. Thankfully, my youngest one, my oldest one is the picky one. My youngest, who is actually going through the allergy elimination, the other program. Um, my youngest one is the one working with functional medicine. And they want, you know, she's the one who will literally eat anything. Typically she's six now, and they want her doing this like, veggie mashup smoothie every afternoon where they had me putting like cod liver oil and like other stuff in it. And she would. Yeah, she is not drinking that. She is like, nope. And I was like, oh. And they would. What they wanted us to do was take like three different veggies and three different fruits or something. And like. Or no, they said two veggies, two fruits, blend it up, freeze it into ice cubes, like, add some, like, you know, healthy fats into it. So some. And then basically you blend that into just any smoothie that you make so that you're getting like doses of like other healthier ingredients, like, mixed in. It's good for the gut, whatever. Yeah, she's just like, I can taste it doesn't taste good. And so we're like, we've been experimenting, then we traveled and then she got sick. And I'm like, now we're back to like, okay, we need to try that little gut mashup smoothie thing again. But she is so disenchanted by it. So then functional medicine was like, okay, you can drop the cod liver oil. I was like, okay, we might have success now.

We would be strong.

Yes. I mean, this is a kid who literally just taught herself how to take pills. Like, she's doing two omega threes at night and they're a kid one and they are like a gel cap and you can either chew them or you can swallow them. And she, like, they're soft. Like, you can kind of like roll between your fingers, but it's like a thick fat, you know, liquid filled kind of thing. And she just. The first night was like, I'm going to swallow bills. And I was like, okay. And she just did it. And ever she was like, can I do more? I was like, no.

Meanwhile, that positioning. Yes.

I mean, thank goodness for all the work we've done there with the tongue tie release and the myo and expansion. I'm like, girlfriend can actually swallow pills. It's amazing. Whereas my 9 year old has the space to do it. But like, has totally psyched herself out. Like, she is not about, like, I have to do like little things that I can hide, like applesauce for her to swallow. She cannot swallow a straight up pill.

So 19 year old has to chew food and slip it in there. Yeah, yeah.

So I mean, the struggle is real.

Yeah.

Oh, my goodness. Okay, so I know I keep interrupting you. So Maintenance Foods talks about maintenance and dosing and like the length of the program, the ages and everything. So at what point, like, I know you said there might be additional appointments added into the treatment program. You don't really know. And that totally makes sense. I feel like anything in the medical world, like you're dealing with humans, like anything can happen. Right. But let's say, okay, you get to that point. What does it look like once you've completed the program, do you still have to keep, like, eating certain foods frequently? Do you like, do they talk about that yet?

Yeah. So there, there's a parent Facebook group for all of the patients that are in this program. So I love kind of reading those posts and asking questions just to get an idea of what it will look like. Because think about it, he's, you know, he's a senior. He could be done with this well into his 20s. I won't be there to spoon feed him. I want to know, like, is this something he can manage? And I don't want him to have any type of regression from what it sounds like. You, you do have to continue eating the food for the first few years of your remission. And I, I could be completely wrong on this. I'm not at that point in the program yet. But a lot of parents mention eating 60 peanuts in a week or something like that. They're, they, you graduate or you're put into remission with a certain level that you need to maintain. But it's weekly, it's not daily. It's, you know, you're going from eating things twice a day to maybe you have to remember once a week just to keep this protein, you know, going in your body. Which is so funny because again, when I was pregnant with him and when he was a baby, we were told to avoid the nut and avoid peanut. So it just makes you wonder. Now I think the recommendation is to give it to them. Yeah, Yeah, I think, yeah.

Now they're saying to give all the allergens in the first year of life because they want the exposure. It's like everything's changed.

Yeah. But that exposure is what kind of what they're trying to recreate now, which is, yeah, you know, amazing. So, and you know, remission also looks like maybe once a year going out for blood work, making sure everything's maintaining. So you're no longer flying out four to five times a year. We're eating foods once a week. But on the flip side, you're, you're not really even, you know, worried about anaphylaxis so much anymore. You're, you know, where your levels are and you know what your body can handle. You're not worried about cross contamination or. That's, that's my goal. That's the hope. Yeah.

You can live life. You can go to a restaurant and not have to be concerned that you're going to go into anaphylactic shock from eating something that doesn't contain your allergens supposedly. Right. Or even just foods that you're sensitive to.

Right? Yeah. Trusting. Trusting that in the busy kitchen someone didn't forget to change their gloves or some stir something with the wrong.

Yeah, well, I mean, these days I feel like everyone has disclaimers like, it's become harder and harder to find restaurants that they'll say, oh, we have a gluten free menu. Oh, we have an allergy friendly menu. Friendly being the key. Like, we cannot guarantee that there's no cross contamination. Well, how do you eat in a restaurant, like when that's 90% of the place? And, and I'm sensitive to this because I've got, I'm gluten free, dairy free, low histamine. I've got a dairy allergen kid, right? I've got the gluten free, dairy free other one who's working with functional medicine. So like, we are everyone's worst nightmare. We go to a restaurant, we sit down and our friends start laughing because they're like, I hope they don't spit in our food from all those changes you make. And I'm like, it'll be fine. We do this everywhere you go. Everyone can handle it. I'm like, and truly, like, we are not. Like, I'm not an allergy person. Like, they'll bring out the chef sometimes, right? And they'll come talk to you and I'll say, listen, it's more of a preference, not an allergen. I don't want it, I don't eat it, but I'm not going to go into shock. Like, I'm, you know, I'm okay. Whereas. And I'll tell them, but she has a dairy allergy. She has a cow's milk protein allergy. So we need to fully avoid for her. Right. So it's like a different conversation at the same table.

I have the same discussion every time they come out. It's a whole discussion. I'm trying to make sure they understand that I have a preference. I don't eat dairy, I don't eat gluten. But please, let's focus on Jordan over here. Right. He cannot please change your gloves. It's. It's crazy and I get laughed at as well. But as a mom, you know, he's just started to advocate a little bit more for himself. But he even gets embarrassed telling waiters about this and I'm like, can't get embarrassed. This is your life. You have to tell them, you know, and make sure they understand how severe it is. Yeah. But the hope is that we eliminate this and again, can't call it a cure because it is somewhat of a newer program. It's only been around since 2015, so we don't really have the data long term. But from what it's showing, I think they have 99% of their graduates or you know, people who complete the program compliantly are able to eat their like a non allergic person. So that's pretty big. And I mean there are some that have gotten EOE later on in the road and so I'm a little concerned about that. But apparently you have to kind of be predisposed for that to start. You know, it's almost like a trigger.

Interesting because I also feel like from an, like the EOE and let me see if I can say it. It's esophilic. Esophagitis.

Right.

So did I say it right? Like it's such a mouthful. I feel like the only children. I remember when I got my first like patient or like met a mom who had a child and she said, have you worked with a child with EOE before? And I said no, I actually haven't. And I had to look up what it was and that was like earlier on in my career or not maybe not early on in my career, but like at least 10 years ago or so at this point. And you know, I remember looking at it going, huh, how do I work with this kid? Like I would need to communicate very closely with the medical team to understand like what can this child eat? What's safe for this child? That's going to be a very big part of our program. And does this child even want to eat? Because this child is just doesn't feel well. Like, yeah, I. You don't want to eat when you don't feel good. Right. And so, like, what. What are we even. What are we working on here? Yeah, and there was. And there was more going on. This child needed to work on sensory, oral, motor, feeding skills in general, but also, again, that goes back to our nervous system, our digestive system, like all of our systems, our immune system. Everything needs to be working together and talking to each other in order to address these things and have successful therapy. But, yeah, I mean, that's. So I've only really been exposed to EOE as, you know, in a pediatric sense when the. A child's been born with it or when they've quickly developed it soon after birth and in their infancy. So that's actually very interesting. Like, now I'm curious to know, are there a high percentage of adults or even young adults who develop EoE that didn't have it?

Yeah, yeah. My, My good friend has. It was having, you know, the feeling of food being stuck for a long time. And again, she had to see several doctors telling her that she was fine before she really figured out what was going on. She removed all the allergens, and that's how she. It's almost like she's able to keep her esophage, esophagus uninflamed. When she eats the wrong foods, those strictures start popping up again and food gets stuck. And so now that I know, you know, he was eating foods that he, he. They weren't nuts, but if he's eating foods that are similar to nuts, it can also create some kind of inflammation in his body. He's always had, always had some GI issues that we could not figure out. You know, now he's eating now seven different nuts every day, which is just mind blowing to me.

Yeah, it's exciting.

Yeah. And you mentioned something about eating certain foods to lay the groundwork. I forgot to mention that when you start the program, they also give you a list of recommended foods, and those foods are foods for pretty much everyone that can kind of help lower histamine or kind of like you said, lay the groundwork and lay those foundations for. For allergens like pitted fruits and apricots, apples and things like that. He was not very good with those, so I don't remember them so much. I choose my battles.

But yeah, yeah, no, it's been very eye opening too, because people go, oh, well, what is a low histamine diet? Right?

And they're.

And I'm like, well, if we think about what histamines are. Right. By nature, histamines you know, when you have an allergy to something, like what is a histamine? Right. And so I was talking to somebody about this because they were like, what is that? Like, like glycemic? And I'm like, no, it's not the glycemic index. In fact, some of the higher sugary fruits are totally low in histamine, whereas other high sugary fruits are really high in histamine. Like, I can't have pineapple, but I can have watermelon. I can't have bananas, but I can have mangoes. Or I don't. I don't even remember where everything is on the glycemic index. But I'm like, I know some of these are higher. And I'm like, it's basically a chemical that is in your body's cells and you have different reactions or responses to certain foods. Foods that, you know, I have to avoid. Tomatoes. And just a whole host of things that I was eating regularly. Avocado, like that one just kills me. That one really bums me out.

Yeah.

But I'm like, but I feel like I've lived my life like congested. And I had like a post nasal drip. My nose was a little stuffy and I always just thought it was like, oh, I have a dog dander allergy and I own a do and he sleeps in my bed. So of course I'm gonna live a little stuffy. And I'm okay with that. I'm not getting rid of my dog, you know. And then I've actually, I've been using the xlear clear, like nasal spray.

Love it.

Which I have used in the past with like absolutely no improvement. But now that I have, I noticed that the post nasal drip was still there even after cutting out like histamines. And then I started using it. And since cutting out histamines, it's working like it's making a difference. So I feel like together the two of those things are definitely helping me. Oh yeah, it's fast. It's fascinating. You know, this weekend my daughter had her birthday party and I had the gluten free, dairy free, you know, diet, whatever that brand is. Pizza for my one daughter. And I was like, I don't typically eat that stuff anymore. Cause it has tomato based and other stuff in it that I probably shouldn't be eating. And I was like, screw it, I'm going to eat. How I'm going to have two slices. And I am so swollen today, like it's crazy to me. And I'm like, oh, well, yeah. Did that to myself.

So you're really so pure now. You. You've cleaned out those things. So you can notice that. Wow. Have you been on it?

So it's only been maybe like six weeks that I've been low histamine, but I've been gluten free for years. Like six years now. I. I've lost count. Dairy free is also newer, I'd say going on three, four months. But I've done dairy free in the past. I did try to go dairy free again last year at a certain point, and I did it for about six months, and I was like, this is not making a difference for me. And it's just making it so super challenging to live life. Like, I'm just gonna continue taking my lactate pills and call it a day. But she was like, no, this is inflammatory for you. And I did have a dairy allergy when I was a younger child that I kind of. It kind of grew out of the allergy and became a intolerance and more of, like, the lactose than dairy, you know, so different, but still digestive, immune, all that fun stuff.

I. I am a believer that most people are, you know, sensitive to dairy.

Oh, for sure. Yeah. Yes. Well, especially when it's sprayed with certain chemicals, the gluten in this country. You know, there's that, there's that. The grains in general. Yes.

Yeah, grains. I've even noticed reactions for myself with pseudo grains like chia and pinoa, which are supposedly seeds, but overreact.

Yeah. I avoid them. I. I find it interesting. I feel like my body likes certain things and doesn't like other things that I've stopped, like, questioning it and saying, oh, but I should eat this because it's healthy. And now I'm like, if my body's just not, like, wanting something, I'm like, clearly I should listen to that. And the chia. I mean, I like chia, but, like, I don't find myself gravitating towards it. You mentioned quinoa. I would eat it because I thought it was, like a healthier sprouted grain or whatever. Yeah, no, no.

And everyone says oatmeal is so healthy. I can't. I can't tolerate oats. I wish I could.

Yeah. Oats actually were flagged for my daughter and some, like, work that we had done, and I was surprised by that. And then I started to dive into it a bit more, and I was like, oh, oats can be pretty inflammatory. And you know what's really fascinating, too, is a lot of these Alternative products on the store shelves like oat milk and oatly ice cream, I just learned, have other hidden things in them or they put ingredients in under different names. So there's like canola oil in oatly ice cream and there's sometimes like carrageenan or whatever that is in some of these alternative dairy milks and everything. And these are inflammatory ingredients. So now you're trying to avoid one other major inflammatory ingredient, but instead if you replace it with another and it's like, what do you even eat these days?

Yes. Neither farm.

I know, I know. I'm like in this, like, I joined this program and it's like macro counting and, you know, weightlifting for women and really encouraging, like less cardio, more weights to build bone health and also just, you know, strength. And I'm like, I love it. But at the same time, like, we're all having these conversations and these are a lot of like perimenopausal, menopausal, postmenopausal women in these groups and just talking about how inflammatory foods are. And someone was even posting like, you can't even just buy organic anymore and trust that it's good for you. And I was like, so frustrating, but so true. And she's like, it needs to have a 9 on the label to basically avoid all of. I just, I just saved the image to my phone this morning. Hold on.

Let me tell you.

Yeah, so it was like, if the PLU code starts with a 3, then that's a. That's ionizing or radiation electronically pasteurized. If it's starts with a four, it's conventionally grown, sprayed with pesticides. If it starts with a six on fruits and vegetables that's pre cut produce, it starts with a six. That's a problem. If it starts with an eight, then you know, it's genetically modified. If it starts with a nine, then it's technically organic. But you should be checking your organic produce to make sure that they've actually put a 9 on the product and they're not just labeling it organic because that's where they limit the use of synthetic materials during production.

And I was just like, send me that, please.

Oh, I, yeah, I'll send you that. But I'm like, why does this have to be this complicated? And people are like, and this is why I'm doing my own gardening. And I'm like, I don't have time for that.

We don't have time for that.

I'm like, I do.

I'm so careful with sourcing like where our wild fish from or you know.

Yes.

Pasture raised meats. And.

Yep.

It's like that. You have to be so careful. It's just.

Yeah. Are you ordering from somebody locally in south Florida? Like, are you getting from a. Direct from a farmer?

I think that's what I texted you about that.

Yes. Okay.

No, okay. The name and I will send it to you. Yeah, I forget the name that we're ordering from. It's not in Florida. I have had such trouble finding in Florida.

Okay. There is. So I got connected to somebody through the Western Price Foundation. There's like a listserv and there apparently are farmers like down here where you can buy some like, meat from. So I, I honestly, and, and even like, if people wanted like raw milk, you could also, I think get that too down here. But I haven't, I haven't pulled the. I haven't, I haven't gone through with it yet because that requires driving every so often to like and like, I should just do it. But yeah, we also are very careful with like pasture raised organic, you know, kind of like sourcing, knowing where things are coming from and making sure the fish is, you know, not farm raised and that it's wild and all the things. And I'm like, you know what? At the end of the day too, I'm like, I'm doing the best. Right. With the information I have right now. And like, at the.

I.

For me, it's just like, I know histamines can also be a major factor when it comes to how things are produced. How long they sit out, how long it's been packaged for. If it's, you know, it's like they're even. They would talk about like cooking and freezing and all of this and like the frosting and how histamines are impacted by that process and how long. I'm just like, I can't.

It's too much navigate this. It's impossible. And yeah, it's the reason why I love functional medicine also. It's like to try to. Rather than just going to a doctor, getting the check, you're okay, and everything's within this range of 0 to 500.

Right.

And working with a functional doctor, they give you different suggestions of, you know, supplements. Not that I'm huge on supplements, but I do feel some are really important.

Yeah.

And the food and the sourcing of the food and knowing what to eat.

And even the sourcing of the supplements that you do decide to take.

The sourcing of the supplement. All the things I know.

Yes. Yeah. No, I mean, I think so for functional medicine. They did put me on something is like very short term. So, like, we're basically doing some detox, like opening pathways so that we can like detox something. The words are now, come now, not coming to me. But that's like a two month process total, like, and then I'll be done with those. They did put me on like a, a supplement to help with digesting histamines so that if I am, you know, exposed to certain histamines in a restaurant or wherever, like, it. I have this in my system and I'm taking it twice a day. Supposed to help. I take it like 15 minutes before eating like lunch and dinner. And then I'm trying to think. Everything else is just like your typical stuff. Like my vitamin D, 3K2. My vitamin D was low. Even though I live in Florida and I'm exposed to sunlight. Right. It's like I'm, I'm fair skin. I feel like I've always had vitamin D. It's just like my biology is like how I made up my fatty acids, you know, so they have me on an omega. At night I was taking magnesium, so I do like a magnesium spray at night on like my lower legs and my feet every night. I'm not doing an oral magnesium. I think she, like, wants to limit how many things I'm taking orally since I'm on all this other stuff. So she's like, that's like a really great option for right now. Like, you can also do magnesium bath, soak your feet and Epsom, you know, salt, whatever. I do red light sauna. I do. Right. Like, you know, air, infrared sauna, but red light therapy as well. Like, it's like all these things. And she literally said to me, she's like, you're. You're doing all the things that like, I rec. Right. I'm like, I know I've been spending years, like researching this stuff, but yeah, it's. It's just fascinating. She has me on zinc. She had me doing it twice a day and I think dropped me to once a day already and was only doing that for like, I think a month where I was taking it twice a day. So I feel like she's very like, conservative, but also like giving me things that my blood work actually showed I needed in, you know, in agreement with symptoms that were present.

She. Do you work with an MD practitioner?

So she. I'd have to go back and look. I don't know that she's an md.

I would love to.

Yeah. But I'll send you. Yeah. And she also has a. A nutritionist, an RD who works with her. And so you do get, like, the RD linked up with you if you need it. I didn't need that per se, because I'm working with another RD through this, like, fitness thing that I'm doing, who's actually getting her PhD in Functional Medicine right now, and. And has a background in exercise and stuff, too. And so I was like, whammy.

It's like finding your team and. Yeah. Building your network, and you have to. Have to. It's just not available in the conventional medicine world.

Yes. Yes. No, it's totally, 100% building that team.

Did a podcast recently about food allergies, and I was like, oh, my gosh. I just. I had to share this with you because it's just. I wish I had known about it years ago, and I wanted to just share it as an option. I know it's definitely a commitment. It's a time commitment, it's a financial commitment, and it's not an option for everyone, but it is out there, and hopefully, over time, it will be something that's more available. I thought there were talks of them opening something on the east coast, but.

Well, that would be amazing. Let's move that along. I mean, it does sound great.

They can call me, ask me again. I don't know everything. I hope I relate it properly, but I'm happy to answer any questions if anyone, you know, thinks this might be an option for their child or for themselves. Actually, no. There is a limit of age, so. For their child.

For your child. Yes. Yes. No, that's really interesting. It'll be interesting to see, too, if they do eventually come out with anything that is for adults even, because I feel like, you know, what we've learned, like, in the MYO world is there are certain things that we thought were restricted to more pediatrics, and we've learned that, nope, you can do a lot of these things later on in life, too. So hopefully. Hopefully someday. But this has been amazing. Thank you so much for sharing your story and your experience with this. Where can they find you, Dina?

Well, I. We. I'm actually a speech pathologist, and we have a practice called myofunctional spot. So myofunctionalspot.com and also lactationspot.com both are me. And we work with infants through adults, and they can find me there. My email or cell phone is linked there as well. Instagram, Facebook, and the website. Perfect.

Well, thank you, Dina, so much again. For sharing your journey and this story because I know I'm sure there are people who have never heard of this program, the TIP Program, and I think it'll really benefit quite a few parents that listen to this podcast. So thank you.

Thank you so much for having me.

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