Doing What It Takes: Advocating Through Immunotherapy and Kawasaki with Natalie Grijalva @createlikeamom

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This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.

Natalie Grijalva 0:00

To be honest, I do feel like I have been fearing for his life since almost conception. And it's just because very early on in that pregnancy they found bleeding on an ultrasound, on the very first ultrasound. And I do feel like it all just started there and just never got less stressful. He was definitely my most stressful child just because he came with all the medical issues, and my other two children were healthy.

Amanda Whitehouse, PhD 0:29

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.

0:50

Welcome back to Don't Feed the Fear. Today we're having another patient-focused conversation with my friend Natalie, whose Instagram account is @createlikeamom. She's here to share with us her son's journey through not only food allergy immunotherapy, but additional challenges that they faced when he was diagnosed with Kawasaki disease, and what it's looked like to move forward through complicated medical experiences that ask so much of children and their entire families. I wanted to include this story to remind everybody out there the reality of treatment and life. I don't want to just have experts on the show or people who breezed through treatment to make it seem like treatment is easy, or even that determination alone makes the difficult circumstances disappear. This is a really honest look at what can happen when families keep asking questions, seeking support, and adapting to what life throws at them. Natalie has been amazing in the way that she has made medical care work for her son within the reality of their life, and in the way that she has channeled her frustration about her own experiences and her son's medical needs into trying to educate others and spread awareness and acceptance. I really appreciate Natalie's vulnerability and honesty in this episode, and I will warn you that it's a bit difficult to listen to emotionally, which is what I think makes it so worthwhile

Amanda Whitehouse, PhD 2:06

Natalie, thank you so much for being here on the Don't Feed the Fear podcast. We've been getting to know each other a little bit more, but I'm excited to have a longer conversation with you

Natalie Grijalva 2:14

Yes. Thank you so much for having me. I'm very excited

Amanda Whitehouse, PhD 2:18

Of course. I would love it if you would start for those who don't know you or don't follow you yet just give us a little glimpse into your life and your family and how you ended up being a food allergy mom

Natalie Grijalva 2:28

Yeah. I have three kids, and I wasn't a food allergy mom until my third kid. He wasn't diagnosed until 10 months, but I knew he was allergic at about eight months when I tried to give him some formula and it didn't go very well. Ended up in urgent care and then the rest is history. I've been a food allergy mom ever since. We are a military family and my oldest is now out of the house, so even though I have three kids, I only really have two kids with me usually. And I'm a stay-at-home mom because my son has other medical issues on top of food allergies, and I'm just... I really needed to be flexible, especially with a husband that does a job where he's not very available. We do treatment for my son for his food allergies, and that, that is a whole other part of our life.

Amanda Whitehouse, PhD 3:13

Yeah. There's so much for us to talk about, and if you don't mind, I think it's helpful to share all of it because we sometimes we have these isolated conversations about food allergies, but most of us, either that kiddo or someone else in the family is dealing with other things too, and that's the truth of the complexity of food allergies and the bigger picture of the family.

Natalie Grijalva 3:29

Absolutely

Amanda Whitehouse, PhD 3:30

I've got three boys, all squished together. Like I had too many kids too close together. But so your oldest is an adult now all the way down to your youngest. Tell us a little about what that's like.

Natalie Grijalva 3:39

Okay, so I had my first child they're all same mom and dad for all of my kids.

Amanda Whitehouse, PhD 3:46

Do people question that a lot when they know the ages?

Natalie Grijalva 3:49

They do. It's like one of the first things they're curious about. But no, my husband and I dated in high school, and we became pregnant with her our senior year of high school. So I actually had her the week I turned 19. So I was a really young mom. And I thought that was the hardest thing I would go through. It was not.

Amanda Whitehouse, PhD 4:07

was preparing you.

Natalie Grijalva 4:09

It was not. Yeah, I became a mom really young, and I decided not ready to do that again. So decided to wait a while. My husband and I then got married. He went into the military, and after a while, life felt pretty settled, and I thought I don't want my kid to be alone throughout life. I'd like to give her a sibling." So then we had another, and it just, that's how that happened. My last two, they're not terribly far apart, about four years, but that's more to do with miscarriages, unfortunately.

Amanda Whitehouse, PhD 4:43

I’m so sorry. That's another whole complicated issue.

Natalie Grijalva 4:46

Yes. It is, for sure

Amanda Whitehouse, PhD 4:49

Yeah. And then you had your third. Luckily, he was healthy when he was born, but you said pretty young that switch to formula was tough?

Natalie Grijalva 4:58

Yeah. So to be honest, I do feel like I have been fearing for his life since almost conception. And it's just because very early on in that pregnancy they found bleeding on an ultrasound, on the very first ultrasound. And they were basically telling me, "Hey, this could be another miscarriage. This is like 50/50 with this type of bleeding." And I do feel like it all just started there and just never got less stressful. He was definitely my most stressful child just because he came with all the medical issues, and my other two children were healthy. And so I was very lucky with my first two children. But yeah, to be honest, when he was born, there was something odd that I s- I always think back to this day, and I think I almost feel like he could have had a milk allergy from day one." And it's because when he was born, that was very traumatic. I hemorrhaged, and I they had to work on me, and I wasn't able to breastfeed him. So his very first feeding was a bottle of formula.

I noticed there was so much mucus everywhere, and I was having to suck it out of him. And I thought, "This is so odd. I've never had to do this with my other children." And I did ask them about it. I said, "Why is there so much mucus? I'm having to constantly suck it out of his mouth and his nose." And they're like, "Oh, it's just I don't know. They explained it away as often happens in my experience with medical professionals. But it did get better after a couple days, and then I was breastfeeding him for the rest of the time, and I never saw that again. But I do think back that was really odd, and that actually tends to be a precursor to his anaphylactic reactions is tons of mucus.

Amanda Whitehouse, PhD 6:50

And then when you switched back to formula, was it immediate? You said you ended up at urgent care right away

Natalie Grijalva 6:56

It wasn't immediate, but it was pretty quickly. I tried to give him formula. He kept spitting it out. I was so frustrated because breastfeeding was not good with him. And and I kept trying to give him this bottle. He kept spitting it out. I was like, "You know what? Nap time." And so I went and I put him down for a nap and he woke up so soon. And I was like, "What is going on?" And I went to grab him, and he was just swollen. His whole face was swollen. And I didn't have any idea about allergies at this time, but even I knew this is a n- this is an allergic reaction. I have to get him somewhere now. I didn't even button up his PJs. I threw him in the car, buckled him as fast as I could, and took him straight to urgent care. And it... care, why urgent care? Because that's not the best place, but again, I didn't know much about allergies.

Luckily I got him there, and he really was okay. He didn't go into full-blown anaphylaxis, and I was really lucky. And that's when I started pursuing because I knew it was an allergy. The, the diagnosis was extremely hard to get. I kept taking him back to his doctor. I went three times before they actually understood what I was saying. They kept putting him down for a milk intolerance, and they kept telling me to try different brands of formula. Not like the hypoallergenic formulas, just different brands. They put him down for a milk intolerance. No EpiPen, no nothing. And I had to go back three times before they finally said, "Oh, you mean he's allergic." I was like, "Yes. Yes, I believe he's allergic. Do I need an EpiPen for him?" "Yes, you need an EpiPen and you need an allergist." It's like, "Okay, can I please have that?" So

Amanda Whitehouse, PhD 8:42

amazes me how... And there's research on this, how moms know. Not specific to allergy, but just like in hospital settings when children start to decline, their moms can pick up on it before the vital signs even show it. And I think it's so true for us because we just, we know. And as you said, unfortunately, a lot of us have those experience where we're dismissed or just not taken as seriously as we know things are. I think that lives with us for years after

Natalie Grijalva 9:08

And I have had that experience over and over with him with his different conditions. It's created a real distrust for me with medical professionals

Amanda Whitehouse, PhD 9:17

Yeah, it's tricky. So where did you go from there? You finally saw an allergist and got the diagnosis, and then what?

Natalie Grijalva 9:22

We did a skin prick test. They only did skin prick tests at this hospital. But the allergist, I would say looking back, knowing everything I know, the allergist was pretty decent. I've seen some interesting allergists before. This allergist was pretty decent, but they did only do the skin prick test. I'm a big believer in doing skin prick and blood testing. But I didn't know anything at this point. They did a skin prick test, and it did show up rather quickly, and it was pretty obvious that it was a true allergy based on his skin.

She gave us great direction on how to take care of him everything that I would think an allergist should tell a parent. "Don't use the same pots and pans when you cook for him as everyone else. Do you have other children? If you do, maybe you want to separate them a little bit at dinnertime if they're eating all of his allergens." And so she was really knowledgeable, and she helped me a lot, but were military, and we moved often, and I didn't get to ever keep an allergist for very long. So that initial diagnosis was really the only time I saw that one. And it didn't really get better from there with allergists.

Amanda Whitehouse, PhD 10:28

Yeah, that's one thing I was thinking, not just with the doctor, which is a really central part of it, but the whole community that you would build and getting to know other people with food allergies or just friends who get it must be so hard when you're moving. I don't know how frequently you've moved, but

Natalie Grijalva 10:42

Up until this place that we live in now about every two years we were moving. It was difficult for many reasons. But yeah, certainly with the food allergy stuff it was difficult. Yeah

Amanda Whitehouse, PhD 10:55

You got a little good guidance in the beginning. Was it going well?

Natalie Grijalva 10:58

So despite that allergist being really good and explaining to me, like, how serious it was, I still found myself not really getting it. I really was trying. for instance, made a, a homemade pizza one night, and I was like, "I'll give him a piece of the crust. There's no cheese near that." And it's like no, Natalie, I... No. That's not a good idea." And he did react. He did react. and so it was really a learning process. I did not know anyone who was a mom of kids with food allergies. I wasn't connected online. That is unfortunate because that is where I feel like over time I've gotten the bulk of my information. And I was just I was new to it, and I was learning it, and I made some mistakes.

The biggest mistake was only a few months later, and it was when we were moving across several states. Since I was a new allergy mom, I was like, "What am I gonna feed this kid?" He was really picky, and he can't eat anything with dairy or says may contains milk. And so I had the hardest time. Our traveling was over days at time, so you can only pack so much in a cooler that's going stay well, and I was very stressed out over it. And I was trying to figure out how to feed him. There was one morning in particular, where We were trying to get on the road. I didn't have anything to feed him that morning, and I was so worried about him eating I thought there, there must be something here at this continental breakfast he can have."

I ended up with scrambled eggs, which is so silly because I didn't realize at the time that most people use milk in their scrambled eggs. And there were not labels at this continental breakfast. It wasn't labeled or anything, and I wasn't at the point where I was realizing you have to ask about literally everything. And I gave him some scrambled eggs thinking, "Oh, I'm sure this is fine." We went to up to the hotel room after that and he was just extra clingy. He was whiny and trying to get me to pick him up, but we were trying to get on the road, and I was like, "I can't pick you up right now. I've got to go to the car and get something." I went to the car, and by the time I got back, my husband opened the door with him in his arms and then he said, "Something's not right." He said he's been sneezing out more mucus than I've ever seen in my life. It's not normal." And I looked at him and I said, "Get the EpiPen and we have to go now."

We got as far as to the elevator down the hall, and he started going limp. I knew I sat him down on the table. I was like, "Please Epi him right now." And so my husband did. He Epi’d him right there, And my son jolted up and started crying, and we just rushed him to the hospital. I think he even vomited on the way to the hospital. The hospital was very close by. But by the time he got there, he was much better. The EpiPen had really kicked in, and I was the one bawling. I was an absolute mess. I was bawling my eyes out. And that was the first and probably scariest reaction he's had because he just looked like he was just losing life in front of me That remains to this day, I think, the worst reaction

Amanda Whitehouse, PhD 14:19

Yeah. I think all of us allergy parents can feel our own stories when we hear you. I feel mine because it's so scary. And then there's that layer that you described of the guilt, like I should have known. Unfortunately, nobody can teach us everything right in the beginning, but it's a steep learning curve with very obviously high stakes. But It's the way we all learn it. So I'm sorry that you had to go through that, and we all feel it with you because it, it lingers.

Natalie Grijalva 14:47

I feel okay about it now, but it, I think it traumatized me for a while, and I, yeah, upset about it for a while for sure.

Amanda Whitehouse, PhD 14:57

Yeah. It's so hard. What came next? You obviously finished your move at some point.

Natalie Grijalva 15:02

Yeah. So we moved to California is where we were going. In California, unfortunately the military healthcare situation is not the best. At that military facility, they were like, "Oh, the pediatrician is the allergist here. We manage the allergies." And I was like, "Okay, so he doesn't get an actual allergist?" And "Nope, we manage the allergies. Trust me. We confer with allergists all the time." And I'm like, "Okay, and so he followed my son for the next two years while we lived there.

And at one point he did do a blood test for him, because he was like, "Oh, he's three now. He's very likely to be growing out of this by now." And I was like, "That's great." And he's like, "Let's do a blood test." I was like, "That sounds fantastic." and the blood test came back somewhere, IgE was somewhere in the 30s, and he was like, "Yeah, you've gotta avoid milk." I was like, "Okay." A year passes and it's time, we're still in California, it's the end of California at this point and it's time to, I can get blood results again, because it's been a year, and let's see where it's at now. This time over 100. And I just I believe I cried in that office. The allergist proceeded to tell me that based on my son's history of reaction, which was anaphylactic shock, essentially, and his numbers, that he does- he doesn't think, because we finally got an allergist, by the way, that he doesn't think that my son is one of the ones who's going to grow out of it.

And that was really hopeless news. That was really hopeless news. Because if you're avoiding dairy for your kid, as if it's poison and going to kill them, because essentially that's what it felt like you're avoiding most food. And it's really hard. And it's very limiting even on things you can go do, right? So road trips, for example. I didn't want to do many road trips anymore. So that was really hard. And that's when I started look at the Food Allergy Institute, which is where he's at now

Amanda Whitehouse, PhD 17:19

About what age was that then?

Natalie Grijalva 17:23

I think he was three. We waited for a few months. While we were in California, I thought, "This is great. We can just drive to appointments." By the time they called me to tell me he was at the top of the list and we're ready to go, the military had just told us that we were moving. I had to put it on pause because I said I don't think we can start it right now. We have to do a whole move across the country. We're going to the East Coast now." So we had to put a pause, and they said, "That's fine. We'll leave you here. You can come back when you're ready."

So we had to wait. When we got to South Carolina, we settled in for a little while, and it was in that, within that first year that we started. By the time we did our launch week, which is basically your big week of like starting treatment, he was almost five years old. He was at the end of four, almost five.

Amanda Whitehouse, PhD 18:16

For those who aren't familiar, tell us about what that actually looks like from the patient perspective. What's the prep and then what's the launch week involve?

Natalie Grijalva 18:28

Yeah. Launch week is you start with them and you go see them before launch week, but that's more of testing and they want a very thorough history of your child, which is great because that's so important along with testing and they do test for everything, but they take highly into account the history and anything they find when they test that looks like it's showing up as an al- an allergen for your child, if you say I don't know about that. I feel like we've had that before," they actually will just challenge it. But they do that long before the launch appointment.

It's a culmination of they have gotten all the testing together, they've gotten all your history together, they have utilized their AI system to create the plan, usually the plan is years long, And launch week is where you start. Launch week is where you will challenge any foods that their testing showed is an allergen, but based on history, they don't think it probably is. So you'll do those challenges first, and then in the second half of the week you'll start introducing foods that they know your child is allergic to and you have to start treating them.

Amanda Whitehouse, PhD 19:41

What's that like?

Natalie Grijalva 19:43

It's not too bad. I think a lot of parents get very nervous about launch week. I was not so much. I think for me, the most nerve-wracking part is they do a patch test, and that food sits on your back for 24 hours. When my son did the patch test we came home, this was days later, his back was covered in hives.

And so that made me really nervous, but that wasn't until we had gotten home. That was days after the patch test. And I don't think that's very common at all.

Amanda Whitehouse, PhD 20:16

He didn't have an issue with the first dose?

Natalie Grijalva 20:18

No. He got introduced to, I want to say it was an amino acid formula for milk was the very first thing he started on. And an amino acid formula is basically those proteins are, they're the building blocks of them. and that's the idea of the program. You start really far away from those proteins. So to start with the building blocks of those proteins, I guess that would make sense.

Amanda Whitehouse, PhD 20:45

So you bring that home and then you talk about how they start really far from the actual food and then there's this process. And I love your videos, like you show us all of these, these exotic different milks. Tell us about how that works.

Natalie Grijalva 20:56

He actually had to treat through tree nuts as well because they found due to testing that hazelnut was just on the cusp of anaphylactic from what they can see, and we had never given him hazelnut before, so we could not confirm based on history. And they really wanted to work on that along with the milk because their fear is if they don't work on everything that's kind of elevated, that that one will get higher while you work on the other one.

And it cost me no more money for them to do that, by the way. I want to say that because some people will be online like, "Oh, they're just trying to get your money by doing more foods." And it's actually it cost me the same amount of money no matter how many foods they're doing. Hazelnut is long over with, so I'm not paying for that to be in the program for that at this point. I'm paying to be in the program for milk. So I paid nothing extra to treat that. It was just more work.

Amanda Whitehouse, PhD 21:47

Yeah. That's a good point. Let's pause there because that, you touched on something that everyone wants to know about. Obviously we know that the program is expensive and we hear different things about it. So as much as you're comfortable sharing, can you give us an idea?

Natalie Grijalva 22:00

Yes, it is expensive. It is expensive. It is hard work. My personal theory is that finances aside, just the work part, I work really hard to keep him safe every day just having his food allergy and maintaining his safety with that. So why not just work really hard every day and in a few years be somewhere where I don't have to do that anymore? So that was my theory. and also take all the worry off your shoulders, because that was a lot for me. But that's a whole other thing. It is so much financially. I want to make a reel about it because it's just like people ask me "How do you do it?" And I'm like, "Have you heard of debt?" Because truly at this point, that is how we're doing it. And it's, it's just... It's a lot of money. It’s a lot of money. And you can't... Normal middle income families cannot keep up typically without hustling on the side, or maybe getting donations having close family members who are amazing and helping them through it. It is a lot. And insurance is not covering much, if anything for most people.

Amanda Whitehouse, PhD 23:17

And on top of that, you had shared you feel like you wanted to be home with him, which many of us do, or many of us, one parent will work maybe part-time. So it's not just the expense in dollars, it's the loss in the time that's invested. But as you said, you'd be doing that to take care of him anyway.

Then there's the travel on top of it, too. Oh my gosh, I remember looking into it with my kiddo. The thought of putting the most sensitive peanut allergic kiddo I've ever known on a plane to California from New York… You can tell us how often it is, but that was terrifying to me on top of the cost. I think a lot of people hear about it and it feels overwhelming even though we hear great stories.

Natalie Grijalva 23:56

Yeah. I will say that it feels most overwhelming in the beginning. Between everything you have to do, everything you have to afford, all the work that comes into it, even just trying to source some of these weird foods that you have to do at home, like camel's milk, horse milk. Sometimes they're at a shortage, and it's hard to even source those. They come from other countries, and they're out on Amazon, and now what do you do? And there's so much to it.

But traveling especially makes people very overwhelmed. I had never put him on an airplane before we started the Food Allergy Institute for that very reason. I missed my own grandfather's funeral because my husband was gone with the military, and I would have had to put him on a plane, and I just, at the time I wasn't far enough removed from anaphylactic reactions that I was just in a bad place with that. And I couldn't do it mentally, and so I really do understand that, and I had those fears as well.

The more you do it and the more you realize, "Oh, wait, okay this is actually pretty doable. I can do this. There's a workaround for that." I'm not saying it's perfect. I'm not saying all risk is eliminated. But I am saying that I've noticed between myself and other moms I've talked to who do it, that once you get the hang of it, itdoesn't feel so scary anymore

Amanda Whitehouse, PhD 25:18

Yeah, it's like everything else, we develop our routines, and they may not be perfect, but that upfront investment and always the time and the fear, the anxiety, and the financial investment is in hope that in the future it won't be so difficult and require so much from us.

So I got you off track. Tell us about all of the fun, like milk experiments you get to do.

Natalie Grijalva 25:40

My husband tried every one of them, by the way. I could not do that. I was like, "I'm not trying camel milk. I'm just not doing it." But did camel milk, we did donkey milk, we did horse milk, we did sheep yogurt. I did try sheep yogurt, and I did like sheep yogurt, so to this day I will eat sheep yogurt. Goat yogurt, I do not goat yogurt.

So sheep yogurt reminds me a lot of Greek yogurt. It's got this tang to it, and it's got a very similar consistency to me. It just reminds me so much of Greek yogurt that it seems normal, right? It seems like a normal flavor that you would expect. Goat yogurt, it's got this n- no flavor taste to it, and its texture is kind of runny with, I don't know if I want to say chunkiness to it, but it's just got a strange texture to me. Yeah, I don't like it. I don't like it.

Let's see. What else… Oh, he did ghee. Ghee, for him, was probably the worst. And ghee is not too out there. A lot of people use ghee in cooking, but when you have to just eat it not when it's cooked into something, because you can't cook it into something easily and still maintain the entire dose. I would try and spread it on toast like it was butter, and it didn't matter what I was doing, he just always hated ghee. Ghee was not a fun one. My husband did taste that one, and he was like, "It doesn't really taste like anything, and it just has that really fatty texture." I guess that wasn't a winner.

But I think that's most of the strange milks that we've done. He also really didn't appreciate the amino acid formula way in the beginning. That was tough, too.

Amanda Whitehouse, PhD 27:36

Okay. And then are you through that now?

Natalie Grijalva 27:41

We are currently doing regular Yoplait yogurt, which tastes wonderful because it's mostly sugar. And we are doing boiled cow's milk. So really we are onto cow's milk products.

Amanda Whitehouse, PhD 27:53

Has he had any reactions? or symptoms?

Natalie Grijalva 27:57

Yeah just a little bit, and more so when we started the boiled cow's milk, which makes sense because we're getting very close to just plain old out of the jug cow's milk. He was having a lot of trouble when we started this cycle of boiled cow's milk, with an itchy throat. Itchy throat is common for children in the TIP program at the Food Allergy Institute. However it's usually supposed to resolve, like you either, you start drinking water. If that doesn't do it, chew a Starburst. It gets saliva going to try and wash the proteins out of your mouth and your throat. none of that was doing it for him, and we would give him like some Benadryl on top of the Claritin he already takes. It just stuck for the first few weeks of treatment, and then it gradually got better.

Amanda Whitehouse, PhD 28:47

How far in are you at this point? We know it's a years-long process

Natalie Grijalva 28:51

Yeah. So our estimated time in was going to be three and a half years. We did have a large hiccup in between for another medical condition, which puts us probably more of four years, four... maybe a little bit longer. We are currently almost three years in.

We really are getting towards the end because the last year of treatment you- your appointments are more spread out. It's more about tolerating large amounts less frequently. And I've heard you get to explore actual foods with the milk in it, like normal foods, like one day a week in the last however many months of treatment. So we're coming down to the wire of where life will start feeling more normal like other people

Amanda Whitehouse, PhD 29:38

It sounds like it was more frequent in the beginning, and then are your visits already starting to slow down?

Natalie Grijalva 29:45

Not yet. So we go every, about every three months.

Amanda Whitehouse, PhD 29:48

Right, and you're there for several days?

Natalie Grijalva 29:51

At first I think we had to be there for three days when we were there, and then it went down to only two days. Now we only really have to be there for one day. We do stay for two just because it's very difficult to travel, appointment, travel, and also we have had an appointment before where he almost passed out from blood work and we had to come back the next day. So we do like that buffer day anyways. But yes, our actual appointment is only one day now

Amanda Whitehouse, PhD 30:20

So tell us, if you don't mind sharing I know you have another medical story in the midst of this. So what happened with that?

Natalie Grijalva 30:29

Yeah. So about a year and a half ago now, in September of 2024 my son got really sick. When I say really sick, we were at home and I was taking care of him like I would any other kid that I have when he was, when they were sick. But it just didn't seem normal. He wasn't-- I couldn't keep the fever down. Was, it was so bad. Nighttimes were really bad.

And so I took him to the pediatrician and I, I had also told her, "And also this side of his neck is just very swollen." And she was a little bit concerned and she sent him home. She did some testing that didn't show much of anything, and she s- other than elevated white blood cells from fighting some s- something, she sent him home with antibiotics. And a couple days of antibiotics and his neck that was swollen was now more swollen and hard as a rock. He couldn't really move his neck. It was hard as a rock. It was not normal.

And so I brought him right back there, and the look on her face pretty much said it all. She was like I was afraid that this could happen." And I was like, "What?" she told me basically she thought that he had an abscess his neck, and we had to go straight to the children's hospital. And that began a week and a half of the worst days of our lives, I would say.

He was admitted right away, and by the time he was settled in, he wasn't able to move without extreme pain, so he wasn't moving at all. My husband, he had met us there from... He came straight from work and met us there, and they brought my son Legos, and my husband had to play with the Legos on the tray in front of him because my son couldn't even lift an arm or anything. And so he just laid there and they did a scan on his neck, and it looked like he had an abscess in his lymph node. And they thought, "Oh, this is his problem." So there was talk of we might have to send him to another hospital because that's a very delicate area, and we can't do that surgery here. He might need surgery. But they got the abscess down with antibiotics through IV. I guess those are stronger.

And he was still very sick. It was just really bad. He would scream and cry in pain if we tried to move him. He just couldn't seem to move. He didn't eat or drink most of the time we were in the hospital, and no one could seem to figure it out, and there was a real lack of urgency. I kept trying to get doctors to listen to me and come look at him and it just felt like no one was doing anything fast enough. And I know, of course, I'm the worried mom, but it just didn't, it didn't seem adequate to me. And then the weekend hit, and it was weekend amount of staff and it got worse.

And at one point that weekend, a doctor came in because I requested again and I was like, "Look, like this is really bad." And she looked in his eyes. She did all the things, she stood back and she goes, "I'm very confident that the abscess was it, and we just have to wait longer for antibiotics. I'm very confident there's nothing else wrong with him." And I was like, "Are you sure?" like, "Yes, I'm sure."

But he kept getting worse. And finally my mom reached out to her friend, who's a PA and over the phone, her friend asked me just kind of symptoms, and she couldn't look at him. She couldn't see any of his scans or reports or any information from the doctors. But she said to me, she says "Natalie, I think he has Kawasaki disease." And I said, "Are you sure?" Because that's a rare disease. And she said I think I would have them check for Kawasaki disease." And so I was determined to ask them about that.

But where we went wrong is the first person we talked to about it was a nurse. She came in and we said that to her, and she looked at my son and she said, "Nah, that kid doesn't have Kawasaki disease." And unfortunately, that may have caused him some damage to his heart because it's very important to catch that immediately and to treat it immediately. She probably didn't have any business telling us that, but I will say she must have relayed it to doctors because days later when the doctors came in, all of them came in the room.

A team of doctors came in the room, and you could see it all over their faces that it was not gonna be good. You could tell they felt really bad. And they said... The words that they said were, "We want to check him for something that you actually mentioned a couple of days ago." And that's when they checked him, and part of checking for that is doing an echocardiogram of the heart. when they did that, they came in and they told me there's some enlargement of his artery in his heart." They did not use the word aneurysm. To me, for some reason, that sounded like not that big of a deal. I was like, "Okay what do we do about that?" But my husband called them back in after they tried to leave and he said, "You're not telling my wife the truth." He said, "I looked at the report and it says aneurysm." And that's when I kind of lost it. I had to go into the hall because I, I just could not...

Now, bear in mind, I hadn't slept for two weeks. I was up with him constantly. I really hadn't slept. I hadn't eaten much. I had become like a twig. I was not in a great place anyways, but I really lost it with that because I knew aneurysm was really bad. And it was two aneurysms and they got worse and bigger ever since then. They keep getting worse and bigger, but unfortunately, there's not much to do about that.

Amanda Whitehouse, PhD 36:44

I don't think a lot of people know what it is. Would you mind describing what Kawasaki is?

Natalie Grijalva 36:48

Yeah. So it is essentially the inflammation of your entire cardiovascular system, especially blood vessels. It tends to affect the arteries in the heart the worst, and tends to be that that's usually the only place where aneurysms will happen from it. But It's possible to happen in other places. The inflammatory response, which they now think based on a new study they've just done, is from a unknown virus that they have yet to identify. The inflammatory response is so intense on the blood vessels that it just kind of ruins them. The walls get really weak because they're being attacked by the immune system, and then the aneurysm occurs. It causes a lot of other symptoms too, but that is the hugest concern because all the other symptoms resolve over time. But I will say it is very rough on the entire body, and my son, it took a long time for him to get back to normal. He was weak and tired for a very long time. It's really rough on a child, and it happens predominantly to children usually between the ages of three and five. He was six.

Amanda Whitehouse, PhD 38:11

What are the signs? How would you identify it? And then what do they do once they've diagnosed it?

Natalie Grijalva 38:16

So the signs are a strawberry tongue, so really red and bumpy and swollen, cracked lips, a rash that tends to peel on hands and feet. Bloodshot eyes. My son's eyes were so red. He looked so strange when he was really, really bad with it. His face just didn't look like him, and it wasn't just the eyes. So I noticed some swollenness, but that's not one of the main symptoms. Fever, especially one that you can't get to go away with normal fever medication.

Amanda Whitehouse, PhD 38:51

And then what do they do?

Natalie Grijalva 38:53

So the only treatment is IVIG. It is a transfusion. It is, it comes from plasma. So if you've ever heard of, like, donating plasma from your blood, it takes like 10 to 15,000 people worth of plasma to make a bag of IVIG, and it's extremely expensive. So insurance is helpful. But as soon as they have determined it's Kawasaki disease, that treatment starts. So he did it overnight, and by morning he was much better. If it's not sufficient enough to do one bag of IVIG and symptoms persist, they will do a second

Amanda Whitehouse, PhD 39:33

Wow. You've got two huge different medical concerns that you have to balance. All I can think as I'm sitting here as a allergy mom is your treatment, your TIP treatment. Did you have to stop dosing him, and then what happened?

Natalie Grijalva 39:47

Yeah, we had to stop TIP treatment completely. And that's another thing. Feeding him when he was able to eat in the hospital, which wasn't many of the days, probably more so after he finally got that treatment. But feeding him while there, that was extremely hard. If anyone doesn't know yet, it is very hard to get allergy-friendly food at a hospital even, which is kind of crazy because they treat medical conditions. But yet, the hospital had a sign in the cafeteria like, "Hey, we can't guarantee anything if you have food allergies."

We stopped treatment completely, and we didn't get back to treatment maybe until a month later. When we got back to treatment, we had to go way back to smaller doses of them and work our way back up, but it was a solid at least 30 days before we even started that. And I will say they were wonderful. They contacted his doctors. They worked with me and his doctors very closely to make sure he was safe. His aneurysms weren't stabilized yet. He had gotten a blood clot in one of them about a month or two after the hospital. And his artery in his heart was 40% occluded, and we had to treat that. That was the priority. There wasn't any room to start escalating allergy doses. So we didn't start escalating allergy doses again probably for months. It was months.

Amanda Whitehouse, PhD 41:20

Wow, it, it is a scary process to take on this dosing, but even it can be flexible around something as significant and dangerous as that. So a lot of kids with allergies are complex medical kiddos, so it's good to know that doesn't exclude them necessarily from treatment.

Natalie Grijalva 41:36

1,000,000%. I personally know several other moms who have kids with medically complex children who are doing this program. If my son made it through all of that and just picked back up, then I feel like a lot of kids can if something happens during treatment for sure. It's not ideal. No one's planning for that. But you keep moving.

Amanda Whitehouse, PhD 42:05

How long has it been since that and where has he gone since then?

Natalie Grijalva 42:08

So it's been about a year and a half since his hospitalization and all of that happened. His aneurysms are considered giant. His cardiologist doesn't like to tell me when it gets bigger because it, it sounds so bad. But we did have another recent CT scan of his heart and one aneurysm, the biggest one, unfortunately grew substantially bigger. It was hard to see that. The only saving grace with that is there is a little bit of a difference between if there's an out-pouching, which means it's kind of ballooning, or if it's kind of uniformly just grown. And luckily, my son did have the uniform growth, so that is less of an imminent risk because when you have a, like a, a bubble happening basically, now you worry about rupture. So we have been able to maintain the same regimen of blood thinners and anticoagulants that he's on even though his one aneurysm has grown larger.

Amanda Whitehouse, PhD 43:22

That's got to be so hard to hear.

Natalie Grijalva 43:23

Thank you. Yeah, no, that was really hard to hear. The next day I went to my art studio. I paint, and I'm very artistic. My handle on my Instagram, I don't know if you've noticed, is @createlikeamom. And, and that's because before food allergies existed and before Kawasaki Disease, like I intended to just share my creative side on Instagram, and it just didn't end up going that way.

I ended up just having other passions that took priority because, my kid was going through all these things. And I felt so strongly about raising awareness for food allergies and now also Kawasaki Disease.

But, I went into my studio in my home the next day, and I blasted music, and I just, I really cried it out, and I, I painted. And I- that was my therapy that day. But it was... I was probably a bit depressed for, mm, the better part of a week. I knew I had to pull myself out of it and pull myself back up at some point, but I did allow myself to just be sad for a while. Because the problem with the aneurysms is it's not so much right now because his risk of rupture is not very high since it's not ballooning, but the risk to his future is, is, um, it, you know, it's not good. And, um, there's no good solutions so far, especially for a child.

As a child, they do not do surgery unless they feel like you're about to rupture or, you're in imminent danger because surgery is very, very, very risky, and it's not worth it. So, later in life, I don't know. I don't know what it'll look like. I don't know if there'll be new medical technologies to help him. I'm not sure. But, his risk of something happening to his heart is much higher than everyone else.

Amanda Whitehouse, PhD 45:24

Yeah. Yeah, all those unknowns and uncertainties and nothing really that you can do about it other than to monitor, right?

Natalie Grijalva 45:30

Yeah, exactly

Amanda Whitehouse, PhD 45:32

That's a lot. Thank you for sharing it with us, because I know it's relatively recent still that you found this out.

Natalie Grijalva 45:41

Yeah, absolutely.

Amanda Whitehouse, PhD 45:43

What do you want people to know who are listening? I mean, obviously that part of your story is rare and, and awful. What would you say to people who are thinking about doing food allergy treatment in terms of making the decision and making the investment, like you said, in so many ways? What do you want them to know?

Natalie Grijalva 46:01

I would say do your homework. I did a lot of, a lot of research before I actually put him into TIP, and I consulted on OIT with an allergist and, and I sat back and watched the food allergy groups and watched what moms were saying about their kids in TIP. Um, I did that for a while before I finally bit the bullet and decided to, to do it. Some parents who do TIP are very against OIT. I am not. I would say look at OIT, look at TIP, and decide what feels better to you. I would absolutely research as much as you can both options, and that is if you want to get your child to a place where they can tolerate the food. Because there's also the option of not doing anything and, and managing it, and that's fine too. But if you're desiring to do something about it, there's so much to really think about and consider with, with both.

Amanda Whitehouse, PhD 47:04

What tips would you give people who are going to tackle that in terms of making it doable and getting yourself through the challenges of it?

Natalie Grijalva 47:15

Um, connect with everyone you can. Unfortunately when I started TIP, I wasn't connected to anyone online yet still. I didn't know any food allergy moms. I hadn't found the communities other than the Facebook page. But Instagram was really helpful because you really get to connect more personally with each person.

Amanda Whitehouse, PhD 47:33

Yeah. Well, on that note, I could keep you all day. I feel like we could talk for two more hours, but we both have kiddos who are home and that we're, we're just neglecting. No, we're not neglecting them. But, um, why don't you make sure people know where they can follow you, both your food allergy account, and then if you want to share your painting account, too

Natalie Grijalva 47:55

Yeah, sure. If you want to follow me for my food allergy journey and my, my TIP journey specifically with my son, and also a little Kawasaki disease sprinkled in, that's @createlikeamom is the handle for that Instagram page. And then if you want to follow my friend and I and our painting business that we have that is @dragonflycanvasco, just C-O at the end.

Amanda Whitehouse, PhD 48:21

Okay. And I will obviously put those both in the notes for everybody to find. I love your point about just we need to check in with other people who are living whatever it is that we're dealing with because we learn so much along the way, so thank you for being a resource to everyone. The more we know, the better decisions we can make, right?

Natalie Grijalva 48:37

Yeah, 100%. Yeah

Amanda Whitehouse, PhD 48:39

Thank you so much for being on the show. I think this will be helpful to a lot of people

Natalie Grijalva 48:42

Yeah, thanks for having me. I love this podcast so much.

Amanda Whitehouse, PhD  48:46

As we wrap up, here are your three action steps for today's episode.

First, of course, follow Natalie @createlikeamom and support the work that she's doing. I love connecting listeners with the people behind these stories, especially when they're using their experiences to create awareness and community.

Second, please share this episode with another family who might benefit from hearing it. Sometimes the most powerful thing we can offer someone is the reminder that another family has experienced something similar to what they have

And third, if you're navigating food allergy treatment decisions for yourself, you can check out my book, From Fear to Freedom, A Workbook for Navigating Allergy Immunotherapy. It was created to support parents and patients through the emotional, practical, and personal side of making decisions and then navigating how those decisions actually play out. It's not a resource to tell you what to choose, but to help you ask questions, understand your options, and to feel more supported as you walk the path that you choose for your family. you can find it on Amazon, bookshop.org if you prefer shopping at a different source, and you can also request it anywhere else that you like to buy your books. As always, remember, don't feed the fear, and I will talk to you next week.

Amanda Whitehouse, PhD 49:59

The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.