Creating a Food Allergy Village with Lisa Rutter of NNMG Food Allergic Families

In this episode of Don’t Feed the Fear, host Dr. Whitehouse sits down with Lisa Rutter, the founder of NNMG Food Allergic Families (originally No Nuts Moms Group), one of the largest online support communities for food-allergic families.

Together, they explore the power of connection in navigating the challenges of food allergy parenting. Lisa shares the inspiration behind creating the group, the emotional and practical struggles families face, and how peer support can reduce isolation, anxiety, and trauma responses. They discuss the role of online communities in advocating for safer schools, inclusive social experiences, and emotional resilience for both parents and children.

NNMG Food Allergic Families - Home

FoodAllergy.org

Food Allergy and Anaphylaxis Connection Team | FAACT

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme
www.kyledine.com

You can find Dr. Whitehouse at thefoodallergypsychologist.com and on Instagram (@thefoodallergypsychologist) and Facebook (Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist)
Email: welcome@dramandawhitehouse.com

Transcript

Speaker: 0:01

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..

0:22

This season on Don't Feed The Fear. We are talking about how to strengthen and expand our support systems. Our last episode was with a longtime board member of my local group here in Buffalo, New York, and today we're taking a different perspective with Lisa Rudder, the founder of NNMG Food Allergic Families, which was originally no nuts. Moms group. When Lisa's son was diagnosed with life-threatening food allergies to peanuts and tree nuts, she did all she could to learn and educate herself and everyone around her, and She searched for a local food allergy group but didn't find anything, so she started her own group for food allergic families looking to meet and connect and have play dates. The word about no nuts Moms group quickly spread requests for local groups in the United States and Canada came rolling in, and that eventually led to a huge online Facebook group and forum

Dr. Amanda Whitehouse: 1:12

Lisa, thank you so much for sitting down to chat with me today about no nuts moms group. It's been a part of my life and it sounds like a huge part of your life since you started it. Yes. Thank you so

Lisa Rutter, NNMG: 1:23

much for having me.

Dr. Amanda Whitehouse: 1:24

Do you want to start just by telling us how it all came about? Was it a plan? Was it an accident?

Lisa Rutter, NNMG: 1:29

so in 2007, when my son was born, he was my first born. and he had a lot of reactions. the first 3 years and the doctors would just dismiss it and say it's nothing. I didn't know anything about food allergies. My husband didn't know anything about food allergies. I'm sure there were people in the family that had food allergies, but it just wasn't on our radar. So there were a lot of times when his eyes would swell up probably from us eating peanut butter and nuts because we ate a lot of it. And I would hold him down thinking he had a bug in his eye, you know, pouring water in his eye. I know. God bless him. There were times when they were like, just give him Benadryl and put him to bed, which, you know, I now know I would never do that, but I was a new mom. I had no idea what I was doing. he finally got diagnosed, I believe, 2010 or 2011, but I ended up starting. No Nuts Moms group originally, and then we changed it to NMG Fetalergic Families to be more inclusive. but when I first started the group, I was just looking for moms and other kids that could relate because I was just so lost. So I started the group and I had one member in Michigan and I was like really excited and that's where it all started. But it was just a way for us to meet other people.

Dr. Amanda Whitehouse: 2:52

what platform was it on when you started then, 2011 you said? So it was meetup. com. Okay.

Lisa Rutter, NNMG: 2:59

And unfortunately I had to pay for that. I didn't make other people pay for it, but I had to pay for it to run a group. so I was like, I really don't like, you know, to have to pay for this. And I would like it to be free to everyone. I don't want to charge people. So then someone suggested, Facebook and I was like, okay Facebook wasn't huge then, but I was on it and it just took. Goff like wildfire. I mean like so many people so many members then people asking me from other states We want a group like this in our state and then you know, it wasn't intentional I was just starting a group for me and my son to connect with other people I felt alone and I just wanted support and I couldn't find that all I could find were adult support groups But I couldn't find like the play groups and other moms where I could take my kid So it was really nice to have that. so that was my intention, but then it just grew into so much more.

Dr. Amanda Whitehouse: 4:04

Well, obviously so many people were needing the same thing the way that it exploded.

Lisa Rutter, NNMG: 4:07

Yeah.

Dr. Amanda Whitehouse: 4:08

I didn't realize it was, it was your hope initially to have in person meetups, or were you just looking for people to talk to who understood what do you think you needed the most at that moment?

Lisa Rutter, NNMG: 4:18

So really what my intention was, was a play group. So that was really the intention. When I started it, so we would meet up around Michigan, we would go to the zoo, we would meet up at play places, because I felt so alone when I would go to other play dates with other moms around here that didn't have kids with food allergies, and it was just so awkward. I mean, I would leave there a lot in tears and just, it was just horrible. So once I finally Found, started this group and then, connected with other moms that had kids. It just, it felt so nice to be able to go to these playdates. And then it turned into awareness and, other groups all over. So my focus started to change from not just a playgroup for me and my son. It started to get into advocacy. And stock epinephrine in schools and venues, stock epinephrine. So it, it definitely took, took me in a different direction than I didn't plan, but I became very passionate about it.

Dr. Amanda Whitehouse: 5:27

obviously then you had accidentally built this huge platform and audience, but what pushed it into the advocacy piece?

Lisa Rutter, NNMG: 5:34

I started getting involved with the local support group here called Faces, and that was just for adults. So I would go to their meetings, and then we kind of partnered. they would send people my way, I would send people their way. They're not in existence anymore, so we started having support group meetings too, so it went away from playgroups. I mean, you can still do the playgroups, but we also have the support piece of it as well. But I think that's really what started it when I joined FACES, because then I started being part of the advocacy part. And then I started, working with FAIR, and then eventually I started working with FACT. And it just kind of took off. Making connections with people around the world and it was like family and we just bonded and the more I read, the more I learned, the more I wanted to educate people around me.

Dr. Amanda Whitehouse: 6:32

Yeah. It seems like a natural progression I could say I feel similarly in my work from remembering being that struggling mom to knowing nothing and struggling for some more information and then looking back to those and it was in your group like I I found you must have been right when you switched over to Facebook and I remember thinking. These moms know so much more than these doctors that I'm going to who are also, you know, were dismissing me and, and it was so reassuring that then eventually when I'm like, okay, I think I know some things now, it just felt so natural. Is that kind of how it was to you? Like, I remember how that used to feel.

Lisa Rutter, NNMG: 7:07

Yeah, it was and you know for me to be taking my son to the doctor and they're telling me, you know He's fine. Nothing's wrong And then we finally we were in Illinois at the time and then we moved back to Michigan for my husband's job And then we went to a new pediatrician And just listen to everything I was telling them and they were like, Oh my gosh, you need to get him tested. You need to get him to an allergist immediately. But it was just like I was seeing like one of the most respected doctors in Illinois. People had like sent me to him and he was just dismissing everything and just telling me, you know, keep him away from peanuts and nuts. But he never like made it like you need to go to an allergist. You might need an EpiPen. So it was always dismissed. So it was, it was a shock to me when everything started to unfold. And then I just started just educating myself because I wasn't getting it from the doctor. So I just kind of had to take it on myself.

Dr. Amanda Whitehouse: 8:12

What were the early days of the group? Like was it a lot of other moms feeling the same way you were? Was everyone doing phases of the journey? Okay.

Lisa Rutter, NNMG: 8:21

Yeah, definitely. I feel like a lot of us, it was a bunch of moms with little kids that wanted to do play dates and that's how it started. And then I ended up doing Easter events that were food free and Halloween events that were food free. And we did some Christmas events that were food free. so it was very rewarding. You know, I wasn't. Actually getting paid, it was like, it felt so good to like, be able to do that for people. And to see like, the smiles on their faces, and even as my son got older, You know, I still continued to do it. now he's gonna be 18 in November and I don't do the events anymore. I encourage people in the group to do them. Cause it really is so rewarding once you start doing it. But it's just right now. I don't have the time for it with the three kids. His life has went in a different direction and, the focus is just a little different now.

Dr. Amanda Whitehouse: 9:24

Right. Well, I'm curious, do you work outside of the home in addition to all of the work that you put into NNMG?

Lisa Rutter, NNMG: 9:31

Just part time I work for the schools here. Um, yeah, just with a temporary staffing company. You know, whenever I'm like taking jobs.

Dr. Amanda Whitehouse: 9:42

I don't like that word, just. That's one of the things I work with my clients. I'm like, don't say just, that's a lot. it must be so time consuming. Not just because there's the, there's the main group, but then now there are also. So, you know, each state has a broken off like a subgroup, right? And what's your involvement? Is that all independent or do you oversee everything?

Lisa Rutter, NNMG: 10:01

I try to let them do their own thing, each group, and just, like, help. I am an admin in all the groups because I help set it up. And then occasionally we will have a group leader disappear. That does not happen a lot, but occasionally we do. So I make sure I do stay in the groups just for those reasons. People can reach out and contact us and be like, Hey, what's going on with this group? but really I'm hands off with their groups. I want them to do their own thing and run it. and then the forum we have so much help there. So it's nice. To have that help. And it's just for moms that were in the group that I connected with.

Dr. Amanda Whitehouse: 10:44

That also probably wanted to contribute and maybe take some of the load off of your shoulders. It must have been so time consuming. Yeah,

Lisa Rutter, NNMG: 10:51

they really enjoy it. And I don't want anyone to like police the group, you know, that I never want that. That's why I'm always like reminding members, report. If you see something you don't like, or you don't agree with, you can report it. And then we will, as admins, we have a separate group. Where we can go and discuss the post and what we should do, how we should handle it, so it's nice.

Dr. Amanda Whitehouse: 11:17

Is that a problem a lot? Do things get heated, or what kinds of things do you have to navigate?

Lisa Rutter, NNMG: 11:21

Um, I would say, the big thing was OIT back in the day. That used to be a huge, huge thing. People just bickering, going back and forth with their different, their strong opinions. We're food allergy moms, food allergy parents, and we have strong opinions. And a lot of fear, right? Oh yeah, oh yeah. Which makes

Dr. Amanda Whitehouse: 11:41

it more heated, yeah.

Lisa Rutter, NNMG: 11:43

Yeah, and what I've learned a lot is, um, it may not work for you. One thing may work for this family, but it doesn't necessarily work for the other families. You have to do what's right for you. So, yes, we do have that, and some people are very strong about their opinion, and this is the way it needs to be done. But, um, you, as an admin, you do have to, I kind of have to remove myself sometimes from my own personal opinions and beliefs. And I feel that's why the group is successful, because I do try to stay neutral. As best as I can.

Dr. Amanda Whitehouse: 12:21

Right. And I think we all need that. We need, we're looking for ideas. We want to know what's out there that we don't know about or what other people have tried that that isn't on our radar. But at the same time, we, we don't want to be told what to do or dismissed or this is the only path because I feel like we're getting that outside of that community a lot. Right. So we, we need ideas in a supportive and open way.

Lisa Rutter, NNMG: 12:43

And then when another, Yeah, absolutely. Another thing we have is new moms or new dads that will come to the group. And then you have people like me or you, I mean, we're veterans now. but they don't know they're lost and they're coming to us for help. So sometimes I have to remind everybody we're a support group. We're not here to judge anybody. We're here to help them and guide them. And. and so I think that we need to do the best that

Dr. Amanda Whitehouse: 13:11

we can to support them. Yeah, because unfortunately, I'm sure you've seen a lot of other people with experiences like yours where people are not getting good information or they're getting misinformation or being dismissed. And I'm curious your take on that, or if it's shifted, because I hear a lot of it, unfortunately.

Lisa Rutter, NNMG: 13:26

Yeah, well, the misinformation. I do feel like it's gotten a lot better since my son was little, but I just, I try to tell everybody, you know, do your best. We can give people, articles and literature to look at, but really it's up to them what they decide to do. I mean, and we're not medical experts. We're not doctors. Ultimately they need to consult. with their allergist. a big thing I like to drive home is some people will go to just a pediatrician. I'm not like saying anything's wrong, but I mean, you really should be seeing an allergist for allergies. so that's a big thing that I've seen in the group. So we try, but you know, we can't tell them what to do, but we just suggest, hey, you need to reach out to a board certified allergist. You're just not going to get the same treatment. Care.

Dr. Amanda Whitehouse: 14:18

Right, the same level of specialization. Yeah, I don't mean to dwell on the challenging stuff, and I know I'm seeing so much positivity in the group. Tell us what you love. what's really inspiring or great when you see it unfolding there?

Lisa Rutter, NNMG: 14:33

I love seeing people when they're like, Oh my gosh, I love this group. You guys are so great. I've learned so much. Things like that. It's amazing to hear and see, I would say there's more positives than negatives, for sure, in the group, but yeah, just reading like people that, have had life saving, experiences, like their kid had anaphylaxis, and then they'll say, I knew because of this group to use epinephrine right away. I didn't hesitate I love reading things like that, knowing that we actually helped someone

Dr. Amanda Whitehouse: 15:13

And made a difference in, in a really important situation. There were times when I was newer and younger, where I would have to not read as much, I would, I would dive in and I would want to know everything and then I would sometimes get overwhelmed and soak in everyone else's worries of this happened to them. Could it happen to us too? So I would come in and out of, how much I would participate and then and intake off and on. Do you find other people having that experience or am I just overly anxious? Oh, yeah,

Lisa Rutter, NNMG: 15:41

no, no, no, it can get It's so overwhelming. I actually have to turn my notifications off for like all the groups because it's just it, it gets so overwhelming. So you definitely have to like pick and choose what works for you. It may not work for everyone. I also have, I keep track of the reported food allergy deaths. And a lot of people will say to me, how do you do that? How do you read that stuff? But I do think it's very important and that might not work for everybody. But I do feel like it does help me. And I think keeping a record, obviously, is good, because they don't have, like, an official record out there. I know it can be hard to read, but I, there are a lot of instances where I am like, Okay, check yourself, you're getting comfortable. And then you read these tragic stories. And I think they're helpful to learn from

Dr. Amanda Whitehouse: 16:42

very triggering for people, yet a really good learning experience to, I would imagine that's a tough time in the groups when something like that comes out in the news, as far as people's reactions, getting tough to manage in a community like that.

Lisa Rutter, NNMG: 16:57

Yeah. And some people, they don't want, they don't want to read that. And I get that. And I understand. So that's why you kind of have to. You have to decide what you want to read and what you don't want to read because it can be very triggering and very hard. Um, I wouldn't say I'm numb to it at all because it's heartbreaking every time, but it's a mindset I don't know. I feel like I have to share it when I read things like that because maybe it'll help someone. Maybe it'll save a life. So I know it's hard though for people to To read, but

Dr. Amanda Whitehouse: 17:33

it is. Yeah. And I'm not criticizing you for sharing. I hope it doesn't come across that way. No, no, no. I see. Sometimes I see those conversations kind of spiral into they should, like you said, they should have done. Oh, I T. They should, and it's obviously there's these grieving families, but like you said, so many of those parents have stepped into these advocacy roles and also saved so many kids by sharing what they learned or what no one ever told them or that they didn't know, based on their experiences, which is just the most touching thing,

Lisa Rutter, NNMG: 18:03

A lot of those families that have experienced the tragedy and then they come into the food allergy community and become part of us when they weren't before. And it's amazing that they do that because they're helping so many families.

Dr. Amanda Whitehouse: 18:20

Absolutely. we take it a lot more seriously when it's coming from someone like that, too. I think so. Definitely. Yeah. your son is getting older. Do you want to talk about just your As an allergy mom, not as an allergy advocate, but what's it been like for you over time, things changing? You said there's more information now, but what else have you noticed?

Lisa Rutter, NNMG: 18:41

So when he was younger, it was definitely a lot harder with the food allergy aspect with parties at school. And then once he got into middle school, it started to get a little easier. And then high school, I feel like it's been really nice. he's been really good with this food allergies. He just recently started dating, so that was like a whole new layer. And people that don't handle food allergies, when I would bring it up to them, they'd be like, oh my gosh, that's right. You have to worry about this thing. I mean, could you imagine being a 17 year old boy, and you have to say to a girl that you like, you know, have you eaten this? So I have had to have those uncomfortable conversations with him. but it has to be done. And then as he is going to be a senior next year, I get worried because I still have control, but he's going to be going off to college. And, you know, it's a whole other thing that I have never experienced. And I think. He'll be good because he's very knowledgeable about his food allergies, but he is still, I mean, he's still a kid.

Dr. Amanda Whitehouse: 19:52

What do you imagine life is going to be like as he becomes, you know, an adult, like college is obviously that transition phase into it. Do you foresee your life feeling different? Are you feeling different?

Lisa Rutter, NNMG: 20:05

Yeah, I feel like I'm going to be a nervous wreck all the time. Perpetually? Can you see like a light beyond or not right now? I don't know. Like, I feel like we're in like such a good place right now. But as soon as he goes to college, I'm going to like have sleepless nights. as much as I know he's responsible, he's got a good head on his shoulder, but you add, drinking into that and all that stuff that comes with college. And I'm going to be a nervous wreck. I'm going to be honest. I'm going to be a nervous wreck.

Dr. Amanda Whitehouse: 20:41

Well, at least you know where to turn if you need to talk to people about it. Right. For sure.

Lisa Rutter, NNMG: 20:46

Yeah, that's going to be a whole nother journey that we are going to be. Going on and I'm not sure I'm running for it.

Dr. Amanda Whitehouse: 20:55

Well, that's one of the tough and really unique things about managing food allergies is each phase brings such different challenges than the one before so you feel like you know Like you you're in a good spot right now, and then the next thing coming up changes everything. It seems like

Lisa Rutter, NNMG: 21:09

Yes. Yes. Right now. I feel like he is focused on playing soccer He's great in academics, he's like really focused and all that, and there's not a lot of worry that I have to have, there's not like, there's not many things with food,

Dr. Amanda Whitehouse: 21:28

how about, teenage years and dating. Has it gone okay so far? Is he dating or is he just not diving in yet?

Lisa Rutter, NNMG: 21:36

Well, he had, he did date once. it was a little nerve wracking, but, that was like one of the first things I said to him. Does she know that you have a peanut and a tree nut allergy? And he's like, I think she does. I'm like, um, she needs to know now. So, I mean, we had to have conversations that was totally new for me. it's scary when they venture off and do new things, but he needs to learn to like be very vocal and not embarrassed. That's my big thing. He has to be able to show and communicate. especially like with. He's in college, and if he does have a reaction, last thing I want him to do just from reading stories, I don't want him going off into the bathroom or into his car by himself because he's embarrassed. He needs to be vocal. He needs to tell people what's going on, right?

Dr. Amanda Whitehouse: 22:30

That is a theme that I see a lot and a lot of Sometimes I'll say to parents, it's natural for kids to not want to draw attention, but the best example we can set is to not be afraid to draw attention ourselves, right? Like, and make sure they get used to just, we're going to let people know, and I'm not suggesting that you haven't been doing that, but it's hard because it is natural in those teenage years to just, everything has potentially humiliating, even though obviously it's not, you can't help that you have food allergies. It's hard to see.

Lisa Rutter, NNMG: 22:58

Yeah, yes, for sure.

Dr. Amanda Whitehouse: 23:00

Does he want to go and move far away and have the dorm experience? Or have you even gotten that far yet? Do you not know? Yeah, I think

Lisa Rutter, NNMG: 23:07

so, but I'm hoping it's just like an hour away.

Dr. Amanda Whitehouse: 23:11

Close enough, yeah. Yes, yes, but I do think it's probably going to go away. You made me think of something that I have noticed and I'm curious if you did too. My son is younger than yours. I'm a little behind you. But all those awkward conversations that we have to have with them, the kissing, but it goes back from there. I really think I like to focus on the positives, like, right. And what good things do allergies bring about? And I really think we have a different type of relationship and connection than a lot of the other parents I know with teenage boys. Like you agree. You're nodding. I'll stop talking and let you see how you see it.

Lisa Rutter, NNMG: 23:46

I feel like we're very open with each other and I feel very thankful about that. I feel like we do talk a lot more about things probably than I did when I was a teenager with my parents. So yeah, it has its pros and cons. And he, I mean, he's fine with having food allergies. He's like, I'm fine with it, but of course the mom and me, We worry constantly. But yeah, he seems like it's no big deal. If I can't eat peanuts and nuts, who cares? I don't like him anyway.

Dr. Amanda Whitehouse: 24:20

That's awesome. I'm glad he's doing so well.

Lisa Rutter, NNMG: 24:23

Yes. No, he is. He's doing great.

Dr. Amanda Whitehouse: 24:25

Good. So in the group or with him, over time, do you think that there are things shifting? Is there a direction that, you see? Allergy, either advocacy or just awareness and those kinds of topics moving in. Or is, are we still, are we the same as we were in 2011?

Lisa Rutter, NNMG: 24:47

I feel like, I do see more, more open talk about allergy treatments. I do feel like when it first started out, it was very hard because everybody's like, like I told you, it's. Your way or the highway, you can't, nobody wants to see like different sides of it. like if you want to do IT, great, that is great for you. If you don't want to, that's great too. Or you want to do this, or you want to do that. Whatever works for you and your family. I, I am seeing a shift in that talk. And it's like, running a group, I do feel better that, I can share certain things about treatments and not have people, go bonkers over us posting things, because I do think it's important. So, lots of new treatments, evolving and conversations, so I do see that growing and changing quite a bit from when it first started.

Dr. Amanda Whitehouse: 25:42

I'm curious if you see this, with those new parents that we've talked about. you know, when our boys were young, there was no like, if you start OIT now, it's so much more likely to be effective. But I was thinking, all of the stress of then, and then these newer parents have on top of that, the stress of this message of like, you have to do it now, it's now or never if you don't do it when they're young, which I'm not, listeners, I'm not saying that that's true, but I'm wondering if you see that emotional experience for them on top of what you and I were dealing with at that point in time.

Lisa Rutter, NNMG: 26:10

I could imagine that that's what happens when they go into the allergist office. They're getting hit with, we got, These treatments X, Y, and Z and yeah, that's a lot and like for my son when it all started coming out He's like I'm not interested So I'm not gonna force him to do something that he doesn't want to that's why it's it's just different But yeah, I couldn't imagine new parents right now They have a lot more to deal with but I guess it could be good There's pros and cons to it.

Dr. Amanda Whitehouse: 26:44

Right. There's options. There are more options. Yeah. Yeah. They

Lisa Rutter, NNMG: 26:47

have options now. Yeah. Which is nice.

Dr. Amanda Whitehouse: 26:50

Do you have advice that you would give new parents who are starting out looking back on that phase of things? What are the most important things you want them to know?

Lisa Rutter, NNMG: 27:01

The best thing I could say is just learn as much as you can. I do feel like knowledge is so important and I think that is something that I did and I'm so thankful that I did that just I just dove right in and I just learned as much as I could about food allergies and just look to support and resources do whatever you can. I feel like that is the best thing you can do is just learn as much as you can.

Dr. Amanda Whitehouse: 27:33

What about food Older phases, the adjustment and moving through.

Lisa Rutter, NNMG: 27:38

Things get better. Things do get better. It might seem scary, but things do get better. And, of course, there's always going to be challenges, but I think if you educate your family, you educate your child, and you let them know that they're supported and loved, I think they're going to be okay, and you're going to be okay.

Dr. Amanda Whitehouse: 28:06

Good to hear over and over again.

Lisa Rutter, NNMG: 28:09

Yeah.

Dr. Amanda Whitehouse: 28:10

Yeah, I'm curious if you're interested in sharing what the impact on you has been emotionally and with your, mental health and well being and outlook on managing your son's safety, and in the role that you play with the group.

Lisa Rutter, NNMG: 28:25

Um, right now at this stage, I feel really good in the beginning. It was really, really hard. I found that I had to pick and choose my battles when I was advocating to, especially in my son's school, for example, like I would try to help other families in that school. But then I started to get the name, the food allergy, you know, there she is, you know, So yeah, it's been challenging. I feel great now. I feel like people understand and they're very caring and compassionate towards me and my family. But in the beginning it was very challenging, very hard emotionally, very isolating. And, always in protecting mode. You want your kid to be included in everything and people don't understand that. But right now, as of today, I feel like pretty good. We have a great circle of friends and family seem to understand. But in the beginning, it was, it was very, very, very challenging.

Dr. Amanda Whitehouse: 29:28

Will you say more about how you developed that? I mean, that's what I'm focusing on this season, is we need to round out who we have, right? Don't, don't get all your support from NNMG, even though it's a great place to go, but how did you develop that more fully and, and supportively around you?

Lisa Rutter, NNMG: 29:43

I feel like I was constantly posting on my Facebook page articles. And information. I mean, I would have people reach out to me from high school that don't have kids with food allergies and they'd be like, we have learned so much from you. and I feel like family too. It was sometimes uncomfortable with family members, but I really feel like, the group and myself have really educated them. And it's. It's brought on a support from not just NMMG, and then my, friends, they seem to always want to know, and they're very interested and compassionate about what other kids are going through with food allergies, so, I would say just trying to educate as best as you can. I know some people don't want that information, but I would just keep cranking it out on my Facebook page. People would read it, and I would just try to educate as best as I can without, like, offending people.

Dr. Amanda Whitehouse: 30:46

Right, just information, just factual information. Yeah,

Lisa Rutter, NNMG: 30:49

just information.

Dr. Amanda Whitehouse: 30:50

I didn't do as much of that I would share with family, but I didn't do as much personally as far as sharing information. Because it's hard to let go of it when people are upset or take offense or feel like I'm pushing something. But I imagine that's a part of it, right? You have to just put it out there and accept how people respond?

Lisa Rutter, NNMG: 31:09

Yeah, and we've had, I've had close friends that have had children with food allergies, too, that aren't in my group. And, um, some of the stuff that they do with their kids, I'm like, ugh. And, you know, in the beginning, I wanted to try to, like, This is how it should be. And this is, you need to do this and you need to do that. But it was not being received the way that I wanted it to be received. So I had to step back and realize. You can say it, but, you know, once you give that information, they will do with it as they want to, but you can't force it upon them.

Dr. Amanda Whitehouse: 31:54

I, I don't want to offend anyone. And I know you don't either. I don't think those are the people who are probably listening to this conversation either. Right. But I would say though, I think that goes hand in hand with their experience and their individual level of, of what's going on with their allergies, because obviously if they were having severe reactions and big problems, that wouldn't continue. So the families I've seen who have that approach, it kind of is working because they're floating along and not. So maybe that is best for them, that they're not having this unnecessary level of anxiety if their child's, you know, threshold of reactivity is not as sensitive as my kiddos, you know?

Lisa Rutter, NNMG: 32:30

Yeah. And then, but then it's me inside thinking, but I don't want that to ever happen to them, you know?

Dr. Amanda Whitehouse: 32:36

So it's

Lisa Rutter, NNMG: 32:36

so

Dr. Amanda Whitehouse: 32:36

hard. It is hard. I want to protect everyone. I can tell you feel the same way, but I've had, Like in personal situations where. I go home and I'm just sick to my stomach when you have the knowledge that you feel responsible, right? There's a level of responsibility that you feel. Yeah,

Lisa Rutter, NNMG: 32:52

for sure.

Dr. Amanda Whitehouse: 32:53

Yeah. Talk about, if you would, what's it like having friends with food allergies? what's different about the friendships when their kids don't have food allergies?

Lisa Rutter, NNMG: 33:04

Uh, well It's a lot different, but so, the people that I am friends with, with food allergies, I feel like when we were, when the kids were younger, it was just such a great bonding experience. We always had stuff to talk about. I can totally relate to everything they were saying. And then people with not food allergies, they would talk about classroom parties and food and, for example, and I'd be like, Gosh, bite your tongue, bite your tongue. I know a person in that class with an allergy and you're talking about having X, Y, and Z. It's just different. It's not on their radar, but it's like constantly on my radar with my friends, whether they have food allergies or not, so that's, it's a lot different in that aspect.

Dr. Amanda Whitehouse: 34:01

Yeah, I think for me, the way I would describe what you're sharing, it's like we have this lens that gets put on and before we do, we didn't realize how everyone everywhere is obsessed with food and talks about food and food is just so central and part of everything. And it's just normal for everybody, but obviously it becomes so different for us.

Lisa Rutter, NNMG: 34:21

Oh, yes, people would say, Oh, my child's childhood is going to get ruined if they can't have that cookie to decorate for the holiday party.

Dr. Amanda Whitehouse: 34:31

They won't feel special on their birthday. I'm so glad we're

Lisa Rutter, NNMG: 34:34

not there anymore. But yeah, yes. That's tough.

Dr. Amanda Whitehouse: 34:39

Do you think you've seen a change in that over the years in terms of people outside of the allergy community, maybe understanding it better or having any shift in attitudes toward us? I do feel

Lisa Rutter, NNMG: 34:52

like there was a time, when the CD see first released guidelines for schools, I did see a big shift, in parties and stuff, and I do still think it's better now, Valentine's Day and things like that, but now that I have, a daughter, she's in elementary and fourth grade, no food allergies, It's, it's different for me to sit back and see how much food is at the parties. It's just not on their radar like it was with me. So, sometimes I'm like, I feel like this is slipping back. But I do think it has improved quite a bit. since my son was in school, I feel like people are more compassionate towards it. But I do still have food at the parties all the time. Do

Dr. Amanda Whitehouse: 35:44

you think that slipping back is just not having you or a parent like you in there advocating and kind of pushing? Yeah, maybe that's

Lisa Rutter, NNMG: 35:50

what it is. Yeah, maybe that's what it is. Um, I'm not pushing and advocating for it. And I was always the party mom when my. And I was like, we can't do this. We can't have that. so and so can't have this. I would be advocating for other people, not just my son, when they were in the class with him. And now I purposely try to, take a step back in that area. when. My daughter doesn't have any food allergies, but yeah, it can be hard sometimes when I hear, Oh, well, that person has an allergy, but yet there's still all this food. And of course my heart is like,

Dr. Amanda Whitehouse: 36:29

Oh, Yeah, you think almost it would be, Oh, it's going to be so less stressful going through with this kiddo without the food allergies, but it's a different way. Right. In terms of, you can't unknow what you know, and what you, you know, I was trained to notice now. Yes, yes, for sure. what direction do you see the, the forum and the groups going in? social media is changing a lot and, I think the nature of kind of groups like that are shifting. Do you, have you thought about that or is it? Something you see changing. You know,

Lisa Rutter, NNMG: 37:00

sometimes I sit and think, how long will I be able to do, do this? And I did stop doing the community events, so that's been like a huge weight off my shoulders. I generally enjoy posting news and food allergy information on the The community Facebook page, not the forum but the community Facebook page. I don't seem like ever stopping doing that. I feel like that's really important. the forum, I feel like it's so popular. I don't see that going anywhere. Now the local groups, I'm not sure how long the local groups will last. I mean, we still have over a hundred, but it really depends on the group leader. and what they want to make of each group, but I don't see it going away anytime soon. Honestly, I feel like everybody really needs it still. And it's just, it's always constantly active, always active. So I don't really see it going anywhere anytime soon.

Dr. Amanda Whitehouse: 38:04

Good. I hope not. I mean, so many of us, it's like, it's our first lifeline. It's, I mean, I know because it was for me, I remember, um, someone in the group, you know, when I posted and I was new saying. You know, welcome to the club that you never wanted to be a part of, and even though it was awful and I didn't want to be a part of the club, I was like, okay, but thank you for, putting your arm around my shoulders, and it's, for so many of us, it's just the first, place we feel understood and seen in this experience.

Lisa Rutter, NNMG: 38:31

Yes, it's awesome and Facebook has been great as far as, being able to reach a ton of people.

Dr. Amanda Whitehouse: 38:38

Definitely. You mentioned how much you enjoy sharing the information and the news. I'm curious if you have favorite resources where you like to look for information that people might also want to follow or subscribe to. Where do you go?

Lisa Rutter, NNMG: 38:52

So, Allergic Living Magazine is my favorite. And then FACT, Anaphylaxis Connection Team. Allergic Girl, Allergy Travels. I love the Nut Free Walk. She has like. Tons of great resources. I love Red Sneakers for Oakley, Elijah's Hope. I mean, there's so, there's so many. Oh my gosh, I feel bad. I know I'm missing a lot. But if you go on our website, I have like a list of like resources

Dr. Amanda Whitehouse: 39:27

Perfect. I'll make sure I, I share the link to it in the notes from the show. and you mentioned FACT and you're involved with them. Do you want to say a little bit about that?

Lisa Rutter, NNMG: 39:36

Yes, so I am, in charge of support group development, and I don't, do as much as I did in the beginning, but if someone wants to start a support group in their community, I am also there to help, as well as, to support them. And then, for example, if someone reached out to me for an NMG group in their area, I can ask them if they want to become a fact recognized support group. And then I would add them to FACT and get them started. And that would be for any groups, wherever. Whoever wants to start a group, I would help them become a fact recognized support group.

Dr. Amanda Whitehouse: 40:16

Perfect. I think there is a nice balance, that, that huge resource and wealth of information in the big groups and the forum and what you share, on the community page, but then also having that local connection both bring something different to the table in terms of what we're needing. Yeah, yes, definitely., what hopes do you have for the future of the allergy community and the allergy world? Are there things that you see on the horizon or are there directions you see things going that you think are going to be big for us?

Lisa Rutter, NNMG: 40:47

I feel like there's so many big things out there right now going on. I know U of M was doing a great study that hasn't been put in trials yet, but that looked fascinating. I forget exactly the details, but it looked so cool. And then there's so many other exciting treatments out there. I mean, you hear about toothpaste, desensitizing the neffy now, I haven't gotten my son the neffy yet, but I'm, I have a script for it. I'm getting ready to fill that. obviously I would love a cure for food allergies. I would like it to be easier. the OIT thing, it's not for us, like I said. but something a little easier for families where you don't have to ingest daily. Something, that you're allergic to. so I, I am very hopeful. I feel like there's a lot of things out there on the horizon. So I'm just, I'm very hopeful it continues.

Dr. Amanda Whitehouse: 41:44

I think it will. I feel like we're building, not we, I can't take credit for it, but there is momentum building in terms of, of ideas and solutions and, you know, thinking back to, like you said, when, when OIT was so controversial in the group, now there's like 15 things and as you said, it's not as controversial, but our minds have had to be open because there's all these new ideas and some of them available now. Yes. Yes. We talked a little bit about the strength of our relationships and the communication with the kids. But is there anything else that you can remind us is a positive or an added bonus of food allergies?

Lisa Rutter, NNMG: 42:21

Um, compassion. I feel like it has made me more compassionate towards Other people cause you don't know what people are going through. And I, I do feel like it has made my entire family more compassionate to other people, not just people with food allergies, but just people going through all kinds of struggles in their lives. So I do feel like that's been the blessing. I just feel like it's made me more of a compassionate person to others.

Dr. Amanda Whitehouse: 42:52

I agree. I see that too. Tell everybody if they happen to be listening and yet not a part of NNMG, tell us how to find the group. Okay. So, if you

Lisa Rutter, NNMG: 43:03

are looking for a support group in your area, you can find us on FACT's website, the Food Allergy and Anaphylaxis Connection Team. They have, find support group, and we're also on FAIR's website as well. And then you can also just simply Google our name, NNMG Food Allergic Families. It'll pop up. Our website, It's real easy to find if you Google and then we have all the local groups on there and Facebook, too. You can also enter it in Facebook and it'll pop up. It's a very popular group.

Dr. Amanda Whitehouse: 43:39

It's a big crew. Um, I'll be sure to put the links in there, too, to make it easy for people to find it. And I want to thank you because, like I said, it really was truly the, the beginning of a lifeline for me when I felt like I was drowning and lost. So it means a lot to me to be able to meet you and, and ask you all this stuff.

Lisa Rutter, NNMG: 43:58

Thank you.

44:00

Here are your three action steps that you can take after listening today. Number one, if you're not already a member search for NNMG Food Allergic Families, you will find their website You'll find the group easily on Facebook and on Instagram, so you can choose one or all formats that work for you if you don't already belong to the group. Number two. After listening to Lisa and I chat about moving through the stages of allergy management, take a moment to reflect on the stage that you're in right now. If this is new to you and you're still adjusting, if you've already been through a few rounds of ups and downs, reflect on what you've learned. What's harder or easier right now relative to other phases of the journey? And give yourself a little bit of credit for all that you're navigating and have navigated in the past. Number three, you can take that perspective and mindset and use it to connect with someone. Today I was able to thank the person who created a lifeline for me when I was the mother of a newly diagnosed child and I was scared and I felt really alone, and that was a great feeling for me. So in whatever way you're able to think of who helped you and maybe take a moment to thank them for being there for you when you needed them the most. So once again to Lisa Rudder, thank you for creating that for me and for helping so many other families who've been in our shoes. 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 White house. Thanks for joining me. And until we chat again, remember don't feed the fear.