Ep. 227: The Caregiver Perspective on Oral Immunotherapy (OIT)

We’re exploring how one family chose oral immunotherapy (OIT) for their child and what life has been like since they made that decision. Food allergy parent, advocate, and blogger, Hillary Tolle Carter is sharing her family’s OIT journey with us today!

Resources to keep you in the know:

• Hillary Tolle Carter - Website
• Hillary Tolle Carter - WebMD Blogs
• Follow Hillary on Instagram

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Transcript

Caroline: Welcome to FAACTs Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone. I'm Caroline Moassessi and I am your host for FAACT's Roundtable Podcast. I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog.

And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, I just want to say thank you to ARS Pharma for their kind sponsorship of FAACT's Roundtable podcast.

Hillary: We're exploring how one family chose oral immunotherapy, also known as oat, as a food allergy treatment for their child and what life has been like ever since they made that decision.

Food allergy parent advocate and blogger Hillary Tolle Carter is sharing her family's OIT story and journey with us today.

Welcome to FAACT's Roundtable Podcast. We are absolutely thrilled and excited you're with us today. You are definitely a fan favorite and a big voice in our community, so we're so happy that you're here with us to share your personal story.

Oh, thank you. It is truly my pleasure to be here. Thank you so much for asking me to join you for today's discussion.

Caroline: Well, it's going to be exciting and it's going to be fun.

As we get started, let's talk about your children's food allergy diagnosis and journey first. So when did you discover their food allergies and then officially become a food allergy mama?

Hillary: Well, I was really deeply immersed into food allergy land, as I like to say, really early on. I have two boys who are now 12 and 14, but when they were two and a half and six months old respectively, they both had their first reactions only within a few months of each other.

My first son reacted to his first bite of peanut butter and the reason why he had peanut butter at two and a half was because we were under that old information to wait and give nuts later, which we now know was a big mistake.

And he had a mild reaction. He had red eyes, he got a little swollen in his face. Nothing terrifying. We called the pediatrician, we gave Benadryl and he was then done.

We did, excuse me, blood work and he tested positive for peanut and all tree nuts. Fast forward just A few months later, my youngest son had his first bite of banana.

And unfortunately, that was a very, very different situation. He had a full blown anaphylactic reaction that caused us to need two epinephrine devices.

All of the other rescue meds, he passed out momentarily. It was absolutely traumatizing and honestly took me a long time to recover from. And that is when, all at once, I became food allergy mama.

Caroline: That was a lot all at once in a very short period of time.

Hillary: It really was. And, you know, I think when I look back, I remember thinking, oh,

wait, food allergy. This is nowhere on my list of things I was worried about. But when my older son had a quote, unquote mild reaction, I, like so many families I've spoken to, think, okay, this is a quote, unquote mild allergy, which of course, we all know in this space there's no such thing.

So I had to learn the hard way a few months later that, you know, no allergies are mild and severe reactions are very, very scary.

Caroline: That is such an excellent statement because I think all of us can relate to that. When it first happens, we think, oh, this is chill, this is easy. It's just gonna be like, you know, sneezing and itching or whatever.

And then the reality comes in and then this community grows and develops and we're there for each other.

Hillary: Absolutely.

Caroline: So now, how did your family make that decision to even explore OIT as a food allergy therapy option? Like, what propelled you into saying, we want a treatment? And then how did you work with that?

Hillary: So it's, you know, it was quite a journey, to be honest with you. I. The first thing that I say to newly diagnosed parents now is how grateful for them I am for the space they are coming into, because we have so many options.

Even 10 years ago, 12 years ago, when my kids were just being diagnosed, we really didn't have what we have now. So it was a long journey for us to get to oit.

And, and like many other families, we went through multiple allergy practices. We went through multiple rounds of blood work and skin testing and oral food challenges. And note to your listeners, if you're not going through multiple rounds of testing, make sure you're talking to your allergist about that.

We, as a family, between my two boys, they've done somewhere around 30 oral food challenges because we had the blanket blood testing. That is another thing that we now know is not the right way to, you know,

correctly manage food allergy diagnosis. So then we had to spend years Sort of walking back from that. And the other thing that happened to us that's really, really common is that there was a lot of misinformation.

And I don't blame the doctors. A lot of it was what they knew at the time. But we heard things like, your kids are too allergic, your kids are too old.

Boys with multiple food allergies are likely to develop eoe. Lots of things that we now know to not necessarily be true. And so we felt like we had no options but to avoid and to live in our bubble.

So let's fast forward to a few years ago, and we were doing everything right. So we were reading labels, I was cooking from scratch. We were not eating at restaurants, living in our bubble, but managing fine.

And then I gave my youngest son, well, both of them, a new product.

And it was a packaged product from a brand that I had trusted that had a really clear allergy policy online.

And unfortunately, my younger son had a full blown anaphylactic reaction that required four shots of epinephrine and an overnight stay at the hospital.

My allergist at the time was a genius and so wonderful and calling me while I'm at the er, and he said to me, save the food, and if you don't have the food, save the packaging.

We have to figure out what it was. And so thank goodness he saved me. And we did have the packaging, and the company actually was very responsive and very upset about it.

They took the packaging and had it tested, and what we found out was there was gluten and a certified gluten free product.

We never figured out how it got there,

but that was the turning point for me when I was like, if we're doing everything right and we're being extremely cautious and bad things can still happen. This is no way to live.

And the result of that was my younger son, who had always been very responsible and carefree and happy, developed really intense anxiety because he felt like he couldn't trust anything, not even the silverware in my own home.

And so between the both of us, we were. We were a hot mess. That is just the reality. And I think probably there's a lot of food allergy moms nodding their head.

Like once you go through a reaction or you lose a trusted brand, your whole world. Shakespeare. And so it was right around that time, thanks to my deep connections with the food allergy community, that I'm always so grateful for.

A very dear friend introduced me to a lady named Debbie Taback, who I know you also just interviewed,

and she was like, you know, I just feel like the two of you have a lot in common. She just started this new company, Latitude Food Allergy Care. You all should talk.

So Debbie and I scheduled a 15 minute chat and we talked for, I think, two and a half hours.

And we went through our whole life stories and every piece of trauma and all of our favorites and connected these dots of all these friends that we had. And she then was like, you really should talk to Kim Yates, who is also a founder of Latitude.

And so I got on a zoom with Kim and we're talking, and we had known each other from the community, but never really talked face to face. And she said to me, hillary, you know, we can treat your kids.

And I just remember bawling like absolute waterworks. No holes barred. It was over. Emotions came out because I had been told by multiple different allergists that my boys were not candidates for OIT for multiple reasons.

And that's why we hadn't even thought about it. And so to know this was an option was just amazing. And option, option, option is like the keyword that I always say to food allergy families.

So, long story short, in two weeks we were on a plane. We went to Latitude out in the west coast where they began and went through our oral food challenges, made a plan, and started oit.

Caroline: What an amazing story and amazing journey, because you're right,

my, my children are in their 20s now, and it stuns me that we have these options available because back then they were. I was just. You're going to have to live with it.

And so that's what sits in your mind. And so you're just sitting with it, not realizing these new things are coming along. So I'm so happy we're having this conversation so people can realize and hear this.

So now, once you made that decision, how did life change? What was it like going through OIT and including the maintenance?

Hillary: Absolutely. So we are now about three and a half years in,

and the term I use is life changing in absolutely every single way. I will be forever grateful for this opportunity for my boys. And they're. They, they have two very different stories.

And I will top line it for you just because I know we don't have all day. And you can find all of this on my, on my website if you want the real deep dive.

But my oldest son,

basically, we were able to test him out of all tree nuts, except for cashew pistachio. So he was treated for peanut and cashew, as many of you probably know, cashew and Pistachio are very similar proteins, so you sort of get two for one.

Right now he is eating four peanuts, eight cashews, or 16 pistachios a day.

Now, that is a choice that we made to continue to increase his maintenance.

And he's actually about to double his peanut dose next week, which is wonderful. And then eventually we will have the option to do a challenge and potentially hopefully test him out of these allergies.

We will have treated him out of these allergies. He is a perfect candidate for oit, it turns out, and has sailed through the program with absolutely zero reactions, side effects ever.

I'm knocking on wood on air for us right now. It has allowed him to go to sleepaway camp for two different summers. Church retreats, sleepovers with friends. Just a completely different life.

My younger son went from a list of probably over 30 food allergies. He is being treated for peanut, cashew, dairy, wheat and egg. And we have food challenged him out of almost everything else, including, by the way, banana, which he had that first terrible reaction to.

I share that story because it's so important to keep doing annual testing because kids can grow out of things. Bodies do change. It's not always. But please, please don't give up and walk away after that first terrible diagnosis.

So he has been doing what we personally call the low and slow program.

He does have eczema. He does have, you know, he's a very allergic kid. And so for our mental sanity, we just went slow. And so he is doing all of those every day.

And for him in particular, because as I had mentioned, he'd had that terrible reaction. He had that anxiety, all of that fear is gone. He can now go to restaurants, go to sleepovers, eat at school.

He's no longer. None of us are worried about what food is going on around him. We're not worried about wiping down tables or chairs or what his friends have on their fingers.

All of that sort of peripheral food allergy chaos that families have to deal with, we thankfully don't have in our lives anymore because we know he can tolerate, you know, a pretty good amount of all of his allergens.

And unless he's taking them in orally, he's not going to have a reaction. Even if you did, hopefully it would be mild. So we will one day, hopefully get to the same place that his brother is.

He is eating baked egg freely now. So we keep working up different ladders. But the ability for our family to travel, to eat at restaurants, to let my boys have normal, independent experiences all really rests at the feet of OIT.

And I just cannot begin to explain how grateful and how life changing it has been.

Caroline: I can see the relief in your face as you're. You're talking about it. This, this peacefulness and having this ability to move out into areas that you were restricting yourself. So now when you first started OIT, how did you talk to your children about it?

Like saying, you know, we're going to do these treatments and this is what it's like. And were there any hurdles you needed to jump?

Hillary: I'm really very proud of both of my boys. They were both very on board with this treatment option and very brave about doing it with us as a family. We did.

When they started, they were, let's see,

9 and 11, I believe,

8 and 10, old enough to have the conversation. So we did,

we did have the conversation. I'm very big on shared decision making. So is Latitude, which is why we are a good fitness. I think it's really important if your children are older, to make them a part of the conversation and to explain all of it to them in very,

very normal terms of exactly what's happening. I think that is a really big hurdle for families, understandably, is if they've been told to avoid this food and that it could do really big harm to their body and it's life threatening.

They're like, you want me to eat what? Like, it's hard to reverse that in your mindset. But I would just urge you to do your research and talk through it with your doctor and your child, because it's done.

So, you know, you start with micro doses and this is based on, at least at Latitude, it's based on research that came out of, you know, Stanford University, Dr. Kari Nadeau, who everybody adores.

This has been done for a very long time now and we know exactly how to do it. The protocols are in place. It really is safe. I'm not going to cite the data because I don't want to get it wrong, but very few people have severe reactions throughout the process.

And even if you do, it doesn't mean you fail and it doesn't mean that you should stop going.

I think it's just super important to include your children if they're old enough, get their buy in and then go for it because it will change your life so quickly.

Caroline: I love your energy. Again, you just are so animated and honest and authentic and I think that's why all of us can relate to this conversation right now. So just being that you've been through all of this, if you could give listeners considering OIT, even just kind of, you know,

maybe the thought is even way out there in the distance, what would be the one tip that you think would be most critical for everyone to know when they're making this decision?

Like, what would that be?

Caroline: One tip is hard, but I would start with, it's absolutely possible and manageable. I think there's again, so much misinformation and misunderstanding.

It is possible, it is available. You can weave it into your day to day life without it being a big obstruction to your joy and your routine. We figured it out really quickly about, you know, when we would dose.

I think people hear the protocol and they get overwhelmed. But just like everything else in food allergy life, you take it one day at a time and it just becomes part of your process.

And so absolutely it's possible. I would say advocate for yourself, make sure you have the right allergist who's willing to work for you and with you. And I would say advocate with authority.

I think food allergies is still a land where you really have to speak up for yourself. Uh, you have to tell people what you need and want. And if you're not in the right allergy practice, then look for another one.

Hillary: There's options and that's such great advice. That last piece is. I think sometimes we think, you know, we don't wanna insult that doctor. We don't wanna insult our friends who see that physician, that doctor.

But it's okay. You're right. If it's not a match, it's not a match. Right.

Hillary: And it's just like anything else in life. You know, I look back at the physicians that we worked with, that we've moved on from. I have no ill will, I have respect for them.

The way they want to practice medicine is not the way that we want to receive treatment. And that's okay. It's like everything else, there's chemistry. So really, really feel confident in what you need, what your child needs, and look for options.

Caroline: Well said. So now let's briefly switch subjects to you. And you are a food allergy blogger writing for WebMD. So now let's talk about that and how you use your voice with that project.

Hillary: Oh, thank you so much. It has been such an honor to write for WebMD. And I think what I love the most about it is that it shows me that food allergies is getting the legitimate coverage that it so deserves.

You know, I believe this was born out of just the work that I've done. In the food allergy community and my social media. And I'm grateful to be able to share our journey and to share tips and practical resources for for readers.

It's a wonderful opportunity for food allergy families to go look for information. There's five of us who write for the blog, all with unique perspectives, so I definitely recommend that everybody check it out.

And I will say on this particular topic, I have two articles, one on Considering OIT where I do a deep dive on this topic, and another one about traits to look for in an allergist.

So super relevant to this conversation. Go check those out. If you're looking for more and listeners.

Caroline: I'm going to make sure I get from Hillary all the web links to her social media and her articles and everything that she's been talking about. So that way you can follow along later and do some more research and connect.

This has been such a tremendous podcast, packed with information and passion and support that I'm so sad to say we are out of time. So before we wrap up today, is there anything else you would like listeners to hear from you?

Hillary: I would just like to say again that I think where we are in the food allergy landscape is really exciting and if you are newly diagnosed, you're coming into such a wonderful world where there are options.

I think I've said options 20 times during this interview because it's really how I feel and I want people to know they should be empowered to look for options, look for treatment.

You really, really can make the food allergy life a lot better these days and I'm excited. I'm very hopeful for what's to come from here.

Caroline: Well, thank you Hillary for your time. You are very busy. You are just such a passionate advocate, so it's always really fun to highlight advocates and speak to people like you.

So thank you so much for your time. We really appreciate you sharing your energy and your passion with all of us.

Hillary: Thank you so much. My pleasure.

Caroline: Before we say goodbye today, I just want to say thank you one more time to ARS Pharma for their kind sponsorship of FAACT's Roundtable Podcast.

Thank you for listening to FAACT's Roundtable Podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and and listen to our podcast on Pandora, Apple Podcasts, Spotify, Google Podcasts, iHeartRadio and Stitcher.

Have a great day and always be kind to one another.