March 5, 2025 • 42 mins
Renata Doerr, a board member of the Greater Buffalo Food Allergy Alliance (GBFAA), joins Dr. Whitehouse to discuss the power of local connections in navigating life with food allergies.
Together, they explore how local support networks can make a difference, and the GBFAA's impactful initiatives, including an annual awareness race and fundraising efforts that support community education. Renata also shares her family’s personal journey with oral immunotherapy (OIT), reflecting on the emotional and logistical challenges, as well as the long-term impact on their daily lives and mental health.
Whether you’re seeking support, looking to strengthen your food allergy village, or taking already action in your own community, this conversation offers insight and inspiration for building connection.
Sunday May 18, 2205: Allergy Awareness Action 5k
OIT 101 - Established 2010 - The ORIGINAL OIT Network
Teen Advisory Group - FoodAllergy.org
3 Action Steps:
1. If you are in the Western New York area, you can find the Greater Buffalo Food Allergy Alliance on Facebook and at gbfoodallergy.org. Our Allergy Awareness Action 5K is Sunday May 18, 2025: Allergy Awareness Action 5k
2. Look for your local group and get involved.
3. Contact me if you'd like me to speak to your local allergy organization or support group: Connect — Amanda Whitehouse Phd
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com
Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker (00:01):
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence.
(00:22):
So far this season, while I'vebeen focusing on building and
strengthening our supportsystems, we've been talking
about specific people to bringonto your team.
Today what I'd like to focus onis how we can expand that and
reach out and connect with thelocal food allergy communities
around us to build moreindividual connections and to
build a sense of community andbelonging.
(00:45):
I am joined by Renado, who is aboard member of the Greater
Buffalo Food Allergy Alliance.
for over a decade Renata is aphysician assistant and a mother
of four kids, two of whom havemultiple food allergies, in
addition to discussing theGreater Buffalo Food Allergy
Alliance, Renata also shares herfamily's experience with OIT
Oral immunotherapy, the impactthat it's had on their daily
(01:07):
life and mental health.
The G-B-F-A-A recently became a5 0 1 C charitable organization.
And is working on both providingsupport and resources for
individuals and families,managing food allergies, as well
as educating the community andproviding more resources in our
area.
While online support can bereally helpful and convenient,
(01:30):
there is something very specialabout being able to connect with
people in person.
I like to talk about our nervoussystems and how the different
things that we do and don't doaffect them and Connecting with
other people is one of thestrongest safety signals that we
can give our bodies.
So especially connecting withpeople over our difficult or
challenging or scary things thatwe have to deal with.
(01:50):
Feeling like we have a communityaround us to help us in that can
be extremely powerful andregulating.
Dr. Amanda Whitehouse (01:57):
Renata, thanks for sitting down to join
me here on the podcast.
Renata Doerr (02:00):
Yes, thank you for having me.
Dr. Amanda Whitehouse (02:02):
Would you start out by telling everybody
about your own, journey as anallergy family and how you got
involved in this community?
Renata Doerr (02:10):
Sure.
I have four children, and my twomiddle children are the ones
that have food allergies.
my second son is the one who haslike the most severe allergies.
And he, when he was about tenmonths old, I had given him,
baby yogurt, and he ended uphaving full blown anaphylaxis
from the yogurt.
(02:30):
I am a PA, and I was at homewith him when he ended up having
the reaction, and it was justone of these things where he
initially started having a rash,and I thought, oh, is he just
irritated by it because he hadsensitive skin, and then it kind
of started progressing, and so Ibrought him to the ER with my
(02:51):
toddler in tow, and it waspretty traumatic because he went
from crying And like, kind of,very uncomfortably, in distress.
And then all of a sudden in thebaby car seat, stop crying.
And that was even moreterrifying because, they're
backward facing, you can't seewhat's going on.
(03:12):
And I thought, Oh my gosh, soI'm asking my three year old, is
he breathing?, and he's a, howdo I know if he's breathing?
I'm like, is he moving?
And it was a really verytraumatic experience when we got
to the ER was ER I was actuallyworking at at the time.
and I brought.
Dominic in and by that, by thetime we were just there and five
minutes or 10 minutes, he had,facial swelling, full body
(03:36):
hives.
When we got into the ER, hestarted vomiting, started
coughing, kind of asthma likesymptoms, kind of the works.
And, it was just, changed ourworld that day for sure.
we didn't really have anyonewith food allergies in the
family.
So it wasn't something we were,used to dealing with or, I don't
think anyone has ever preparedfully for something like that.
(03:57):
but it was a very, significantchange in our lives that day.
For sure.
And then, it went on from, wetried soy milk for, because I
was going to be transitioningfrom nursing home to, having him
take a bottle, and obviouslysince milk, we realized he was
anaphylactic too, he tried soymilk, and then he was vomiting
after every bottle, we realizedhe was allergic to soy.
(04:19):
So we got him evaluated, and heJust had a list of things that
he was allergic to from, milk,eggs, peanut, multiple tree
nuts, soy.
And then he would even like havekind of oral allergy symptoms to
like different fruits, you know,strawberry, kiwi.
And, that was very stressful toobecause when you're not just
(04:40):
trying to avoid one, food, butit's multiple foods.
And you're trying to transitionhim, but then also what am I
going to feed this child so thathe gets all the proper nutrition
that he needs for growth anddevelopment and all of those
things was very stressful, too.
So we moved to Buffalo whenDominic was just under a year
(05:06):
and then I ended up finding theGreater Buffalo Food Allergy
Alliance and meeting these otherfamilies who are dealing with
food allergies.
And it was just very beneficialto be able to talk with other
people who are dealing with thesame things that I was dealing
with, to be, you know,supported, to kind of share
(05:27):
ideas, to, just kind of gothrough these challenges
together.
So, I ended up, becoming part ofthe board for Greater Buffalo
Food Allergy Alliance.
It's been over a decade now and,it's been wonderful.
I think we can't change thechallenges that we're kind of
given, but when you are able to,like, carry them together and
(05:51):
lift one another up, the load ofthese challenges is just lighter
and it's just easier and better.
Dr. Amanda Whitehouse (06:00):
I think that's true at many stages, but
I'm picturing you especiallythen as a, as a newer mom with
such a young kiddo and thatearly phase of realizing that
you have in your hands a reallycomplicated, allergy situation,
to have that in person supportat that point in time must have
been so helpful as you were.
Trying to navigate, justintroducing foods and it's not
(06:22):
as if you already have somefoods that are established as
safe and then new ones, itsounds like you were right at
that point of every time youintroduced a food, were you
waiting to see if he had areaction that sounds like
something I wouldn't want to bedoing alone without people
around me who have been throughit.
Renata Doerr (06:37):
Yes.
And even, one of the firstmeetings, when we went there,
everyone would talk about like,well, what allergies are you
dealing with?
And there was another mom whowas like milk, egg, nuts.
I was like, okay, you areofficially my best friend right
now.
You know, we are going toconnect and, talk about all
these things because it was justnice to have somebody else who
(06:57):
has had multiple food allergiesand some of them that, were the
same.
Dr. Amanda Whitehouse (07:02):
And then, what happened from there as far
as with your own family and yourkiddos?
Renata Doerr (07:06):
So, It was one of these things where Dominic was
so sensitive and so severe, itwas to the point where if
somebody ate something withcheese or something and then
touched him, he would break outin hives.
So he was even to touch, to, hewas just very sensitive that
way.
one time somebody had cookedburgers and there was
(07:27):
cheeseburgers on one side of thegrill and burger, regular
burgers on the other.
didn't see that there was any,cheese on the part that he was
given.
However, there must have beensome microscopic amount and it
was enough where when he atethat and went to go play in the
backyard, again, fullanaphylaxis.
So it just kind of changed ourworld in that we were.
(07:48):
not comfortable eating out atall.
We couldn't even with our familybecause of the severity of
Dominic, we just had to bringhis food because I mean, now
he's 15 years old, so it's beena long time, but at that time,
not everybody.
really understood crosscontamination and even just
(08:09):
these minute amounts that wouldcause him to react.
so it changed our lives thatway.
And then Andrew is my thirdchild.
I thought, well, he couldprobably eat anything Dominic
can, because Dominic's veryrestricted.
So, but then when I gave Andrewhummus, he ended up having, you
know, rash all over his face.
(08:30):
And we found out that he wasallergic to sesame.
and then at that time they toldus to avoid nuts for him as
well, because they thoughtsometimes kids with sesame
allergies could have nutallergies, just avoid all of it.
So we did.
and just for a while, we kind ofjust went along with finding the
safe foods that were safe forour family.
Everybody kind of eating thesame thing and just not, having
(08:51):
to worry about going out and,other things.
But what's hard is when you havea toddler who's crawling in the
floor and he's going to otherpeople's places and obviously
there's going to be food on thefloor.
It was just a very stressfulthing where you felt like you
don't want to be a helicopterparent, but for their safety,
you have to be when they'reyounger and exploring and not
(09:14):
able to tell you, specificsymptoms when they did start to
have reactions.
So, we ended up.
Kind of continuing on, Dominic'snumbers were not going down
after, a certain number ofyears.
his milk was over a hundred.
Most of his numbers were justvery high.
our doctor had talked about amilk patch, and we thought, if
there's anything that can help,we'd, love to try it.
(09:37):
So we went and did a trial forthe milk patch for him.
unfortunately that was not.
any benefit to him and the, withbeing part of the, research
group, every certain amount oftime they would do blood work,
but then they would also makehim challenge, his milk.
So they would give him smallamounts of milk and incremental
(10:00):
larger amounts.
and it was not a great situationbecause the one visit that we
had, He started having a rashand we're like, he's reacting,
but they're like, Oh, it doesn'tmeet the criteria for enough of
a reaction.
So he needs to continue, thenext dose of the milk to see if
he can tolerate it.
And he ended up havinganaphylaxis with the next dose
(10:23):
that they had.
And we had multiple rounds ofepi that were required and was
just, pretty awful.
So we stopped with the patch,and then we ended up finding out
about OIT.
Oral immunotherapy, and I kindof researched.
OIT 101 for a while, just tokind of find out a little bit
(10:44):
more about it.
Our original allergist was notvery supportive of OIT because
it was newer at the time.
this is going back seven, eightyears and, he didn't have the,
he said they didn't have thedata yet to support it and its
safety and everything.
But for me, when I startedlooking more and more into it.
(11:06):
Even though it was not beingoffered locally, um, I just
thought, you know, Dominic issevere enough where we have to
at least try.
You know, there's people whowere in the mindset, well, if
you're too severe, you can't doOIT.
But honestly, for me, I waslike, he's so severe, we need
this.
we need, if, even if itdecreases his, threshold for
(11:32):
having anaphylaxis in any way,he's safer for it.
And the other thing was too,with just like the multiple
allergens, I was just thinkingabout in the future, you know,
he's going to be, have to beindependent.
He's going to have to datesomeday.
And it's one thing to ask yourdate not to have.
peanuts, if you're going to bekissing them or something, but
(11:54):
to say, and don't have milk,eggs, peanuts, tree nuts,.
It was very difficult and Ithought he does have to navigate
this world.
He does have to eventually eatout or be at friends houses and
things like that.
And so we, found Dr.
Silver who was in, um,Cleveland.
So it's about a three hour drivefrom us in Buffalo area.
(12:17):
And it was a commitment becauseat that point I have four kids
and, busy lives and, but for meit was an investment that was
worth, the time and everythingthat we did for it and, both of
my boys, Andrew and Dominic,both went through OIT.
(12:37):
Andrew went through it formultiple, like for peanut and
tree nut.
And Dominic for milk, egg,peanut, and multiple tree nuts.
So, and it was the best choicewe've ever made.
our lives today, it's likeincredible, never could imagine
the freedom that he has rightnow and just the independence
(13:00):
and just the ability to eat somany more things, than, we had
ever, he had ever been able tobefore.
it's been truly life changingfor us.
for OIT, it's not always thisperfect, linear, everything is.
But, on the flip side, when Ilook back at now, before when
(13:22):
someone would touch him withmilk, he'd be breaking out in a
rash and everything.
And now, he's able to drinkmilk.
He is actually to the pointwhere he's eating pizza, like,
ice cream, and loving.
life eating these things, andthen we just came back from a
trip and it was just like, I wasjust looking back, like
(13:42):
marveling at it because he wentand he had ordered a burger with
an egg on it and cheese and theworks and loved it.
And I thought he couldn't evenhave baked milk or the baked
egg, when he had had a challengeyears ago, cause his numbers
were down low enough.
He started having throatdiscomfort and just with the
tiniest amount of baked egg andI thought This is nothing short
(14:05):
of a miracle for us with this Sohe has also like taken a trip
like his eighth grade trip toWashington with his class
independent Navigated everythingadvocated for himself and did it
safely and just it's justincredible So we you know still
he takes the doses a certainnumber of days which is
(14:28):
basically the food a certainnumber of days to maintain his,
his desensitization but hisnumbers have dropped
dramatically and he's just, Imean, he's done amazing.
And so, I mean, Andrew too, Iguess, I talk about Dominic more
because of the severity thatDominic really had, but.
Andrew is just free eating tooand it's funny because Dominic,
(14:52):
I feel like he's always beenlike a foodie, but he just
couldn't have that stuff.
And like when we went to, abuffet at, the, at the Dominican
where we were and he was inheaven.
He could try all of thesedesserts, all of these things
and truly enjoy it.
And my biggest thing was just.
His safety, I mean that was thebiggest key for me with OIT was
(15:17):
just he is so much safer out inthe world He is, just
tremendously safer than he wasprior to that treatment
Dr. Amanda Whitehouse (15:25):
Your family is such a good example of
how it's all relative in termsof how complicated and how hard
our problems are because to you.
your third son, his allergiesseem like easy breezy compared
to Dominic having so many andbeing so reactive.
for some of us, one allergen isa lot to handle, but all that
you had on your plate, it'samazing how.
far you've come in terms of,being so free now.
(15:48):
And I love when you talk aboutOIT.
I think a lot of people,especially if they're
considering it and they haven'tdone it yet, they're really
weighing, the medical aspect.
And what's the risk of us havinganaphylaxis if we just avoid
versus doing OIT?
And what's, how much will he beable to eat?
And how many days will he haveto dose?
And I don't think people talkenough about What you're saying
(16:09):
in terms of the freedom and themental health, the, the
confidence, and such a differentlevel of calm for you and
everyone in the family now.
Renata Doerr (16:18):
Absolutely.
he never would have been able tomake that trip to Washington, D.
C.
for himself.
He, because we couldn't even goout to eat.
We couldn't even trust otherpeople preparing because it's
just the smallest amount of,cross contamination.
And now, it's given him thatconfidence, too, that I can do
this.
I can manage this.
I can, go to all these placesthat I want to go and do these
(16:42):
things and I, I don't have thelimits that I had before and he
feels safer doing it.
Now granted, sometimes teenagersdo not make the best choices but
for example, in his, one of hisclasses, they were brought in
foods from the world and Histeacher just kind of said, well,
those with food allergies, youknow what you're allergic to,
(17:03):
don't eat what you're allergicto.
However, people brought inthings that they made homemade.
There was no list ofingredients.
There was no anything and so hesaid, I thought I was eating a
lemon cookie, but they didn'ttell me there was walnuts in it.
I didn't know there was nuts init.
I thought it was just a lemoncookie.
So he, without obviously havingthe ingredients there, took a
(17:27):
bite of it and he's like, Well,I just, I tasted it, I knew
there was nuts in it, so I justspit it out and thank goodness
he didn't have any reaction, butI just, I said to him, thank
goodness for OIT because itmight, would have been a very
different outcome prior to thishad you mistakenly eaten
(17:47):
something with nuts.
Even if you spit it out, youwould still have ingested
enough, but then the other thingis, you have to be.
You just have to be more carefuland, I reached out to his
teacher and I said, it's justnot a safe practice to expect
the kids with the foodallergies, number one, to just
(18:08):
know what's in these things andthere was no ingredients listed.
They can't be making educatedchoices.
number two, really you shouldreconsider having people
bringing in nut products just ingeneral in any of these foods if
you have a milk or an eggallergy, like in the past,
Dominic would just avoid allbaked goods because you just go,
well, I don't know if there'sgonna be milk or egg in it, but
(18:29):
there's things like now thatthere's people making things
with like almond flour or youknow, cashew flour or there has,
there's peanut butter in it orsomebody thinks it's a.
White chocolate chip, but it wasa macadamia nut and there's just
things that are just harder tojust look at and identify as far
as not wise.
it was one of these things whereI said, I'm, I am glad that you
(18:53):
want to try new things.
However, we have to do it safelyand especially, when you don't
have a real list of what theingredients are, you shouldn't
just.
Assume, even if somebody said,Oh, it's a lemon cookie, that's
what it is, because to them itmay not make any difference that
there's walnuts in it, but toyou it does make a difference,
even with thinking about sendinghim off to college in a couple
(19:15):
of years, I'm so much morecomfortable with that than I
would have been, years agobefore OIT.
I mean, it was just reallychallenging.
That would have been that muchharder.
Dr. Amanda Whitehouse (19:29):
Well, and speaking of that, I have to ask
because I'm sure people canalready tell just from this
short conversation, you are somellow, you come across as so
calm, I think you and I startedconnecting more when we were
both doing the patch trials, wewere in different phases of it
in that clinical trial, but evenback then, before you started
this OIT journey, you havealways come across as It's so
(19:51):
calm and not anxious and not ahelicopter parent.
And I am curious for those whofeel always frantic, is it like
that on the inside?
is there something that you havedone to manage it so well?
Or what's your experience on theinside versus how it comes
across to us?
Renata Doerr (20:08):
I definitely have felt the stress.
I've definitely have felt theanxiety around, I used to love
family gatherings and all thefood.
You know, my one side is like,we're half Italian, and it's all
about the food and all thestuff.
And then when you have a worldof kids with food allergies, it
just changes that dynamic.
(20:30):
But I feel like what I've doneis I just try to be as prepared
as I can.
I mean, you try to think of whatare all the potential things
that you can, what you cancontrol, with the situation.
You do that to the best of yourability, and then I think I've
always tried to, with the kids,want them to Respect and
(20:54):
understand their allergies couldbe severe, but to not be in
constant fear of them.
To just try to controleverything that you can, because
that's all that we really, cando.
I don't want to project thisfeeling of being anxious about
all these things, because Idon't think it's beneficial.
I think sometimes it can cloudyour judgment.
(21:14):
I think it can, Just kind ofhave more of a negative impact.
I'm a planner.
I just try to control everythingI can.
Obviously, there's things thatare out of your control.
You think you've checked all theboxes and life is going to
happen and something differentis going to happen.
You think, like I thought evenwith his teachers, that they
were all aware of all those foodallergies.
Please let me know if there'sany food being involved.
(21:36):
And there was no one who reachedout, there was no one who, let
me know that food was going onor, all this kind of stuff.
I try to talk to others who arekind of, if there's something
ahead that I have never dealtwith before, reaching out to
people who have dealt with it isa huge benefit.
how did they deal with it?
What did they, you know, have toconsider?
(21:57):
Was there anything they didn'tthink about that came up that, I
should, prepare for and stufflike that too.
So I think.
That's what I've tried to do,for each different stage,
there's a different level ofchallenges when you have an
infant, a toddler, apreschooler.
Dealing with food allergies.
And the next level is when theyenter school, all the things
(22:18):
that go along with enteringschool and being more outside of
your bubble.
And then after that, as theyenter teenage years now, that's
a whole other level, of likeindependence and things like
that too.
And so I think it's been abenefit having people around me
(22:38):
that have gone through it.
I think it's been a benefit,sharing experiences with other
people and sharing theseresources and, Not doing it
alone.
Dr. Amanda Whitehouse (22:49):
I know a lot of that has been working
with, Greater Buffalo FoodAllergy Alliance, and with them
the schools and other, othercommunity, agencies and
organizations.
So I would love it if you'd talkabout that piece of things in
terms of what you've seen, whatyou think is the most effective,
or what there's the most needfor in terms of collaborating
with those resources that we aretrying to reach out and
(23:09):
communicate and control what wecan.
Renata Doerr (23:10):
Yeah.
whenever someone is goingthrough something challenging, I
just think to find your peopleis so beneficial.
To find the people who are atthat same level, who are with
that same struggle.
Because I think sometimes peopleare hesitant to open up and say,
I'm struggling with this, or, tonot.
(23:33):
Have something a hundredpercent, Feeling confident about
it, and they think of that as aweakness, but I really think it
is a strength to come forwardand talk to somebody about what
you're struggling with, and whatyour challenges are, and
especially when you have a groupwho are dealing with the same
type of challenges that you'redealing with, Opening up, then
(23:54):
other people will open up thatthey've struggled with this too,
you don't feel alone, you don't,feel like you have to reinvent
the wheel and start from scratchand do everything on your own
because especially when you're anewly diagnosed, child or
individual, it is sooverwhelming to try to Bye.
Start from, you know, having,just start from what are your,
(24:18):
basic foods that you need?
that are safe?
What are your basic, kind offinding your, footing and all of
that?
it's just so beneficial with,these support groups as far as
greater Buffalo, we've, we havea very active Facebook group.
So even those, in the past wedid have some in person
meetings, but I feel like around2020 and even slightly before it
(24:40):
started to dwindle as far as howmany people could come in
person, come together in person.
So, the online has beenwonderful because people can ask
questions in real time, I havethese allergies, have you found
Easter candy that is safe?
I have these allergies, whatbreads, what things have you
found?
And just being able to kind ofshare those resources with one
(25:01):
another, with other people whohave the same allergies, and not
have to do all the researchyourself is huge.
And then also, we, have doneeducational talks in preschools
and elementary schools aboutfood allergies.
We've been, working with ourlocal school district a lot over
the past couple of years.
(25:23):
And there is also power innumbers, I feel like too, when
you align yourself with otherpeople who want.
To make changes.
You are so much more.
You are so much more able tohave these changes made when you
were working in a group thanwhen you're just trying to
navigate it all yourself.
(25:43):
everything from even our localschool district.
You know, they didn't even usedto have like the allergens
listed on the website for any oftheir, school lunches.
So it was for years, I mean,Dominic was never able to eat a
school lunch.
I mean, I just brought him lunchevery single day and that's the
way it was.
(26:04):
But after we completed OIT and Ifelt like, he is safe to start
eating some lunches and havethat.
Social opportunity that he neverhad, If there's things that are
safe for him, I'd love for himto experience that at school.
I think back to when he was, inkindergarten and you're trying
(26:25):
to keep him safe.
And I said, just keep it adistance in between because they
spill the milk and they spillthe yogurts.
I mean, those things go flying.
and I went to visit him a fewdays into kindergarten and I saw
he was at a table.
All alone and how heartbreakingthat was because his whole class
was at one table and he was atanother table by himself and I
thought, this poor kid is he'ssafe.
(26:49):
just the social impact on that.
I just was heartbreaking.
Navigating that social andphysical, health.
Going back to now, with ourgroup that we kind of move
forward with, now we haveallergens listed.
Now, we didn't know that theycould actually make
accommodations in the cafeteria.
(27:11):
people who had gluten allergiesor intolerances could get gluten
free rolls or, you know, they dohave substitutes.
Dominic could have, Two juicesinstead of a milk that he could
have with the lunch and there'sjust different things that you
were not aware of before andwith working together to make
(27:32):
things more allergy friendly, tospread the awareness that these
accommodations are availablefor, students with food
allergies.
we're working, together.
We were for, people who comeinto new to the district.
to get resources of these are,resources that are available to
you, as a food allergic, studentin the district other things
(27:55):
that we've done is Epi training,EpiPen training and, different
schools.
We've also, attended a sciencefair to kind of any of the
students and it's amazing howmany.
Kids, how many are justinterested in learning about it,
interested in, being aware ofhow to give their friend
(28:16):
medicine if they needed to.
And we've had parents approachus who said, Oh my, this is
wonderful because my son has afriend with food allergies and
they drop them off and they say,Oh, just so you know, the
EpiPen's in the backpack.
But she was like, I've neverseen the EpiPen.
I've never used it.
I had no idea how to use it.
The time to know how to use itis not in that emergent moment.
(28:40):
And so, just trying to spreadawareness, trying to educate,
the more people that are EpiPentrained, the, there's going to
be lives saved.
That, people are safer in ourcommunity.
And then we've been also doing,advocacy work, within the group,
too, and trying to get moreEpiPens on first responder,
units and vehicles.
(29:01):
we've been, working on, writingto legislators about,
legislation that would protectthe food allergic community.
There's just a lot of thingsthat, we've been active in
doing, and I think, it's beenwonderful having, People who
want to make progress and makechange, and doing it together,
(29:22):
it's been so much moreproductive and so much more
beneficial, and we hope to justcontinue to do that throughout
our whole area.
Dr. Amanda Whitehouse (29:30):
I think it's great, and I'm appreciative
for you and the other folks whoare more active in getting that
stuff going, because obviouslythe change, the social change,
and the impact that we can haveis huge, I find for myself, for
all the people that I work with,when you get involved in that
way, it pulls you out of yourown focus on our lives and our
problems and what's hard for usand it, it really shifts the
(29:51):
perspective in terms of thisbeing part of a bigger thing
there's usually someone elsethat you can focus on and say,
okay, this is a bigger problemthan just what's happening here
in my house and in my life and Ithink that helps with the
anxiety The other difficultfeelings that we have about it.
Mm hmm.
Yeah, absolutely.
And it fits everybody.
So, one of the big projectsthat's newer again for the
(30:15):
Greater Buffalo Food AllergyAlliance is the 5K that was
started up again last year.
Do you want to talk about that?
Renata Doerr (30:22):
Yeah.
So, we are very excited.
It's our second annual 5K, andIt is gonna take place on May
18th at 10:00 AM in OrchardPark, and it's just a wonderful,
last year was fabulous.
We had over 300 peopleparticipate and people who are
part of the allergy communityand also the non allergy
(30:43):
community.
Community.
people who were just runners whokind of joined in and it's a
very fun family.
Friendly 5K that you can run,you can walk, There's music,
there's raffles, there's a lotof wonderful activities,
involved in there.
We do EpiPen training as well,while we're there, and then it's
just, I think, a great time, forfamilies to meet one another, in
(31:07):
person, for other kids to seethat there's other kids with
food allergies, like if they'rein a community or in a location
where there's not that manychildren who have food allergies
and they feel like It's onlytheir burden that they're
dealing with.
It is so nice for them to meetother kids and individuals with
food allergies and know thatthey're not alone.
(31:28):
And then just for, people to gettogether and support one another
and show up for one another andspread awareness.
So it's a great, great Lots offun activity.
And last year we were reallylucky.
We had Buffalo Bills coach SeanMcDermott as our race starter,
which was wonderful too, causehe has a family members with
(31:49):
food allergies and, yeah, itshould be a great time this year
as well.
Dr. Amanda Whitehouse (31:54):
One of the most impactful aspects of
the race last year for me andsome of us who were chatting
afterward were some families whoshowed up who were newly
diagnosed.
And to find the community inthat way, surrounded by,
celebration and making a bigdeal out of these awesome kids I
thought that was really special.
Renata Doerr (32:12):
I think, the in person part is It's so
significant, especially whenyou're newly diagnosed, to just
actually meet people with this,dealing with the same allergies.
And we did have multiple peoplereach out to us and, there's
been people who are like, wewant to be involved in this
event next year and we'd love tohelp because it was so impactful
(32:32):
for me and my.
Children to be there and to besurrounded by, other people with
the same challenges.
It was just wonderful.
And I, I don't think thatthere's, there's a wonderful, I
mean, it's amazing all thethings that we could do online
now and then, you know, the realtime feedback and all that.
But there is that element ofbeing in person and being face
(32:54):
to face with people and meetingthem, where they are and kind of
just.
Being able to connect in thatway.
Dr. Amanda Whitehouse (33:03):
and I know it took so much work from
those of you who were planningit for so long.
I just want to say thank you toyou and all the folks who put so
much time in because it reallyis impactful in a different way.
to see the adults Treating thisis important to see coach there
and talking about how importantit is and how we need to take
care of and be aware and educatepeople on allergies is so much
(33:24):
different than what they usuallyhear like, okay, take your
EpiPen.
We have to call the teacher.
We have to check theingredients.
All of the day to day managementthat we do sounds so different
from the energy and the languagearound.
You are also important to us andwe're celebrating and we're
doing this fun thing for you.
Just because it matters to us.,So, and the organization has
(33:45):
just become a 501C, right?
Renata Doerr (33:47):
Yes.
We just officially got 501Cstatus over the last few months,
which was wonderful.
And so we're officially a nonprofit, which is just going to
help us with being able toreceive donations so we can kind
of further our advocacy andfurther our impact, in the
community.
So, we're very excited aboutthat.
Dr. Amanda Whitehouse (34:06):
Yeah.
What would you tell other peoplewho are maybe on the fence then
about getting involved, lookingto see if they have a local
group in their city or area andthen maybe stepping up into
leadership
Renata Doerr (34:17):
when you're first, dealing with, The new diagnosis,
I just think it's very importantto find a support group,
whether, looking forward to seeif there's one that is meeting
in person in your local area, ifnot joining one on one of these
platforms, whether it's in aFacebook group or another
(34:37):
platform, even if it's online,just having someone to kind of
and other people who are in yoursame situation to Like I said,
share resources, go through ittogether so that you're not
doing this on your own, I thinkis key.
And then I think after you areat a point where you feel like,
(34:58):
okay, now I have my, routine, mythings are under control enough.
I think it's just important to,if you are able to, even in any
small way, any small amount oftime, it makes a difference.
It's amazing how how much of adifference you can make to other
(35:22):
people, and how much easier youcan make other people's lives
who are coming after you by,standing up for things that you
believe in, for Pushing forthese changes that you know will
make you, your children andother children safer, whether
it's at school or with anotheractivity, and being that
(35:43):
advocate, because you are yourchild's best advocate, and You,
can take that role that muchfurther to just advocate for
others who aren't able toadvocate for themselves.
Dr. Amanda Whitehouse (35:58):
Yeah, and it's reciprocal we come in and
out of phases where things areunder control and then maybe a
little bump or a shift and youcan contribute and then you're
still involved and connectedwhen you need the support back.
I had kind of reached that pointand then then started diving
into as you described like,okay, We're at a point where we
are going to try to take someaction on some of these things.
(36:19):
I want to thank you because wehad done another treatment first
and then we did that, we didpeanut patch clinical trial.
Then we also moved into OIT fromthere.
I had doctors kicking me out oftheir offices just for asking
about it.
I had, of course, family memberssaying, you're going to do what?
You know, nobody understands.
I knew I was doing the rightthing for my child, but to, to
(36:39):
know you and to say like, okay,there's another person out here
who is making me feel like I'mless alone.
A real person, whose face I cansee, lives in my community, was
so different for me, when I feltlike I was the only person that
I knew, other than strangersonline doing this thing.
So thank you for that.
and I think that speaks to theback and forth.
I remember coming to speak as apsychologist about mental
(37:01):
health, but then myself feelinglike, oh gosh, I'm so glad I saw
Renata, and I could ask herabout this, this, and that, and
um, It, it, it's so, it's justso rewarding and helpful to be
connected and, and we can'talways anticipate what that's
going to look like or who thatwill show up in the form of.
Renata Doerr (37:19):
Yeah, absolutely.
And then I think as our kids aregrowing up too, it's amazing.
Like Dominic, he's 15 now and hejust joined FAIR's, teen
advisory group.
And.
He wants to become an advocate,kind of now that he's kind of
seen that changes can happen andthe benefit it can have.
(37:41):
He's like, I want to beinvolved.
And so he just, started withthis group and by meeting with
other He's like, I think I wantto start an allergy awareness
club at my school and you knowwhat we could do mom, we could
actually go and talk toelementary school kids and
(38:01):
middle school kids and we cantell them about how to navigate
these different things or whatyou should do in a situation
when this happens and we can,help them.
And it was just amazing, to hearthat.
He has.
He's taken this challenge in hislife, and now he's wanting to
help others with it, and, it'sjust awesome.
Dr. Amanda Whitehouse (38:23):
It is, and it's no surprise, because
he's seen his mom doing so muchwork on that, and, and how
powerful for kids to hear thatfrom other kids.
It's one thing when we adultsare, are lecturing them or
showing them things, but to talkto other kids who understand is
really powerful.
That's awesome.
Yeah, I'm glad your kids are alldoing so well now, I think it's,
I think people appreciatehearing experiences with OIT and
(38:46):
with other treatments because Iknow it can be intimidating.
There's a lot of information outthere, so I appreciate you
sharing that piece of things foreverybody who's listening, too.
Renata Doerr (38:54):
Absolutely.
I mean, like I said, if it'ssomething that somebody is even
remotely interested in findingout more about, you know, start
doing research about it, starttalking to other people or
reaching out to people who'vedone it so that you can get more
experience, more information andfeel more comfortable about it.
(39:14):
But for us, it really has beentruly life changing and a
blessing and I'm so thankful forhaving done it.
Dr. Amanda Whitehouse (39:22):
That's so amazing.
The last thing that I like toask everybody is tell us
something positive about foodallergies.
Renata Doerr (39:28):
So I would say we've had lots of, positive
things.
I would say this new, withDominic talking about, well,
maybe I want to go into alsopolitics because maybe I can
help with legislation for,people with food allergies.
And, Having our children becometheir own advocates, becoming an
(39:49):
advocate, I think, That's been adefinite positive change.
I think other things would be,we're so much more aware of what
is in the food that we'reeating, where before food
allergies, we didn't, you didn'tnecessarily need to read labels
like we did, and just kind ofthat was, something where we
started, paying more attentionto for food allergens,
obviously, but then also justbeing aware of what is in our
(40:13):
food, and what we're ingesting,and what Maybe we can make
better choices for otherreasons, too.
So I think, there's beendefinitely positives.
The rainbow from, the challengesthat we've faced.
Dr. Amanda Whitehouse (40:28):
I agree 100%.
Renata Doerr (40:30):
Well, thank you so much for talking today Thank
you.
I think it's amazing that you'redoing this and I think it's
awesome that you can impactpeople.
further than the people whoyou're seeing personally one on
one by, putting out this podcastand putting out this information
and sharing these really amazingpeople, who you've had on and
the information.
(40:50):
I think it's awesome.
So thank you for doing that.
You'll find links to everythingRenata talked about today in the
show notes.
And if listening to ourconversation has created some
motivation in you to take someaction, here are a few ideas for
you.
Number one, if you're in theWestern New York area, you can
find the Greater Buffalo FoodAllergy Alliance on Facebook
(41:11):
and@gbfoodallergy.org.
You can sign up for our upcomingallergy awareness section 5K on
Sunday, May 18th, and you'llfind the link to that in the
show notes.
You aren't in our area, look fora local group near you and see
what's out there.
And if you have one but haven'tbeen involved, consider checking
out what events are going on.
It's easy for us to think thatthe less we think about our
(41:33):
allergies, the less stressed weare about them, but it's
actually in connecting withother real life people and
building community around themthat we feel safer and more
confident.
And number three, if you'refinding the podcast helpful and
you'd like me to speak to yourlocal allergy organization,
please don't hesitate to reachout.
I.
Really enjoy presenting for andengaging with groups like this.
(41:54):
Obviously the work is verymeaningful for me and I'd be
happy to talk to you about how Ican do that for your specific
organization.
The link to my contact page isin the show notes.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
(42:14):
If you have any questions aboutyour own medical experience or
mental health needs, pleaseconsult a professional.
I'm Dr.
Amanda White house.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence.
(00:22):
So far this season, while I'vebeen focusing on building and
strengthening our supportsystems, we've been talking
about specific people to bringonto your team.
Today what I'd like to focus onis how we can expand that and
reach out and connect with thelocal food allergy communities
around us to build moreindividual connections and to
build a sense of community andbelonging.
(00:45):
I am joined by Renado, who is aboard member of the Greater
Buffalo Food Allergy Alliance.
for over a decade Renata is aphysician assistant and a mother
of four kids, two of whom havemultiple food allergies, in
addition to discussing theGreater Buffalo Food Allergy
Alliance, Renata also shares herfamily's experience with OIT
Oral immunotherapy, the impactthat it's had on their daily
(01:07):
life and mental health.
The G-B-F-A-A recently became a5 0 1 C charitable organization.
And is working on both providingsupport and resources for
individuals and families,managing food allergies, as well
as educating the community andproviding more resources in our
area.
While online support can bereally helpful and convenient,
(01:30):
there is something very specialabout being able to connect with
people in person.
I like to talk about our nervoussystems and how the different
things that we do and don't doaffect them and Connecting with
other people is one of thestrongest safety signals that we
can give our bodies.
So especially connecting withpeople over our difficult or
challenging or scary things thatwe have to deal with.
(01:50):
Feeling like we have a communityaround us to help us in that can
be extremely powerful andregulating.
Dr. Amanda Whitehouse (01:57):
Renata, thanks for sitting down to join
me here on the podcast.
Renata Doerr (02:00):
Yes, thank you for having me.
Dr. Amanda Whitehouse (02:02):
Would you start out by telling everybody
about your own, journey as anallergy family and how you got
involved in this community?
Renata Doerr (02:10):
Sure.
I have four children, and my twomiddle children are the ones
that have food allergies.
my second son is the one who haslike the most severe allergies.
And he, when he was about tenmonths old, I had given him,
baby yogurt, and he ended uphaving full blown anaphylaxis
from the yogurt.
(02:30):
I am a PA, and I was at homewith him when he ended up having
the reaction, and it was justone of these things where he
initially started having a rash,and I thought, oh, is he just
irritated by it because he hadsensitive skin, and then it kind
of started progressing, and so Ibrought him to the ER with my
(02:51):
toddler in tow, and it waspretty traumatic because he went
from crying And like, kind of,very uncomfortably, in distress.
And then all of a sudden in thebaby car seat, stop crying.
And that was even moreterrifying because, they're
backward facing, you can't seewhat's going on.
(03:12):
And I thought, Oh my gosh, soI'm asking my three year old, is
he breathing?, and he's a, howdo I know if he's breathing?
I'm like, is he moving?
And it was a really verytraumatic experience when we got
to the ER was ER I was actuallyworking at at the time.
and I brought.
Dominic in and by that, by thetime we were just there and five
minutes or 10 minutes, he had,facial swelling, full body
(03:36):
hives.
When we got into the ER, hestarted vomiting, started
coughing, kind of asthma likesymptoms, kind of the works.
And, it was just, changed ourworld that day for sure.
we didn't really have anyonewith food allergies in the
family.
So it wasn't something we were,used to dealing with or, I don't
think anyone has ever preparedfully for something like that.
(03:57):
but it was a very, significantchange in our lives that day.
For sure.
And then, it went on from, wetried soy milk for, because I
was going to be transitioningfrom nursing home to, having him
take a bottle, and obviouslysince milk, we realized he was
anaphylactic too, he tried soymilk, and then he was vomiting
after every bottle, we realizedhe was allergic to soy.
(04:19):
So we got him evaluated, and heJust had a list of things that
he was allergic to from, milk,eggs, peanut, multiple tree
nuts, soy.
And then he would even like havekind of oral allergy symptoms to
like different fruits, you know,strawberry, kiwi.
And, that was very stressful toobecause when you're not just
(04:40):
trying to avoid one, food, butit's multiple foods.
And you're trying to transitionhim, but then also what am I
going to feed this child so thathe gets all the proper nutrition
that he needs for growth anddevelopment and all of those
things was very stressful, too.
So we moved to Buffalo whenDominic was just under a year
(05:06):
and then I ended up finding theGreater Buffalo Food Allergy
Alliance and meeting these otherfamilies who are dealing with
food allergies.
And it was just very beneficialto be able to talk with other
people who are dealing with thesame things that I was dealing
with, to be, you know,supported, to kind of share
(05:27):
ideas, to, just kind of gothrough these challenges
together.
So, I ended up, becoming part ofthe board for Greater Buffalo
Food Allergy Alliance.
It's been over a decade now and,it's been wonderful.
I think we can't change thechallenges that we're kind of
given, but when you are able to,like, carry them together and
(05:51):
lift one another up, the load ofthese challenges is just lighter
and it's just easier and better.
Dr. Amanda Whitehouse (06:00):
I think that's true at many stages, but
I'm picturing you especiallythen as a, as a newer mom with
such a young kiddo and thatearly phase of realizing that
you have in your hands a reallycomplicated, allergy situation,
to have that in person supportat that point in time must have
been so helpful as you were.
Trying to navigate, justintroducing foods and it's not
(06:22):
as if you already have somefoods that are established as
safe and then new ones, itsounds like you were right at
that point of every time youintroduced a food, were you
waiting to see if he had areaction that sounds like
something I wouldn't want to bedoing alone without people
around me who have been throughit.
Renata Doerr (06:37):
Yes.
And even, one of the firstmeetings, when we went there,
everyone would talk about like,well, what allergies are you
dealing with?
And there was another mom whowas like milk, egg, nuts.
I was like, okay, you areofficially my best friend right
now.
You know, we are going toconnect and, talk about all
these things because it was justnice to have somebody else who
(06:57):
has had multiple food allergiesand some of them that, were the
same.
Dr. Amanda Whitehouse (07:02):
And then, what happened from there as far
as with your own family and yourkiddos?
Renata Doerr (07:06):
So, It was one of these things where Dominic was
so sensitive and so severe, itwas to the point where if
somebody ate something withcheese or something and then
touched him, he would break outin hives.
So he was even to touch, to, hewas just very sensitive that
way.
one time somebody had cookedburgers and there was
(07:27):
cheeseburgers on one side of thegrill and burger, regular
burgers on the other.
didn't see that there was any,cheese on the part that he was
given.
However, there must have beensome microscopic amount and it
was enough where when he atethat and went to go play in the
backyard, again, fullanaphylaxis.
So it just kind of changed ourworld in that we were.
(07:48):
not comfortable eating out atall.
We couldn't even with our familybecause of the severity of
Dominic, we just had to bringhis food because I mean, now
he's 15 years old, so it's beena long time, but at that time,
not everybody.
really understood crosscontamination and even just
(08:09):
these minute amounts that wouldcause him to react.
so it changed our lives thatway.
And then Andrew is my thirdchild.
I thought, well, he couldprobably eat anything Dominic
can, because Dominic's veryrestricted.
So, but then when I gave Andrewhummus, he ended up having, you
know, rash all over his face.
(08:30):
And we found out that he wasallergic to sesame.
and then at that time they toldus to avoid nuts for him as
well, because they thoughtsometimes kids with sesame
allergies could have nutallergies, just avoid all of it.
So we did.
and just for a while, we kind ofjust went along with finding the
safe foods that were safe forour family.
Everybody kind of eating thesame thing and just not, having
(08:51):
to worry about going out and,other things.
But what's hard is when you havea toddler who's crawling in the
floor and he's going to otherpeople's places and obviously
there's going to be food on thefloor.
It was just a very stressfulthing where you felt like you
don't want to be a helicopterparent, but for their safety,
you have to be when they'reyounger and exploring and not
(09:14):
able to tell you, specificsymptoms when they did start to
have reactions.
So, we ended up.
Kind of continuing on, Dominic'snumbers were not going down
after, a certain number ofyears.
his milk was over a hundred.
Most of his numbers were justvery high.
our doctor had talked about amilk patch, and we thought, if
there's anything that can help,we'd, love to try it.
(09:37):
So we went and did a trial forthe milk patch for him.
unfortunately that was not.
any benefit to him and the, withbeing part of the, research
group, every certain amount oftime they would do blood work,
but then they would also makehim challenge, his milk.
So they would give him smallamounts of milk and incremental
(10:00):
larger amounts.
and it was not a great situationbecause the one visit that we
had, He started having a rashand we're like, he's reacting,
but they're like, Oh, it doesn'tmeet the criteria for enough of
a reaction.
So he needs to continue, thenext dose of the milk to see if
he can tolerate it.
And he ended up havinganaphylaxis with the next dose
(10:23):
that they had.
And we had multiple rounds ofepi that were required and was
just, pretty awful.
So we stopped with the patch,and then we ended up finding out
about OIT.
Oral immunotherapy, and I kindof researched.
OIT 101 for a while, just tokind of find out a little bit
(10:44):
more about it.
Our original allergist was notvery supportive of OIT because
it was newer at the time.
this is going back seven, eightyears and, he didn't have the,
he said they didn't have thedata yet to support it and its
safety and everything.
But for me, when I startedlooking more and more into it.
(11:06):
Even though it was not beingoffered locally, um, I just
thought, you know, Dominic issevere enough where we have to
at least try.
You know, there's people whowere in the mindset, well, if
you're too severe, you can't doOIT.
But honestly, for me, I waslike, he's so severe, we need
this.
we need, if, even if itdecreases his, threshold for
(11:32):
having anaphylaxis in any way,he's safer for it.
And the other thing was too,with just like the multiple
allergens, I was just thinkingabout in the future, you know,
he's going to be, have to beindependent.
He's going to have to datesomeday.
And it's one thing to ask yourdate not to have.
peanuts, if you're going to bekissing them or something, but
(11:54):
to say, and don't have milk,eggs, peanuts, tree nuts,.
It was very difficult and Ithought he does have to navigate
this world.
He does have to eventually eatout or be at friends houses and
things like that.
And so we, found Dr.
Silver who was in, um,Cleveland.
So it's about a three hour drivefrom us in Buffalo area.
(12:17):
And it was a commitment becauseat that point I have four kids
and, busy lives and, but for meit was an investment that was
worth, the time and everythingthat we did for it and, both of
my boys, Andrew and Dominic,both went through OIT.
(12:37):
Andrew went through it formultiple, like for peanut and
tree nut.
And Dominic for milk, egg,peanut, and multiple tree nuts.
So, and it was the best choicewe've ever made.
our lives today, it's likeincredible, never could imagine
the freedom that he has rightnow and just the independence
(13:00):
and just the ability to eat somany more things, than, we had
ever, he had ever been able tobefore.
it's been truly life changingfor us.
for OIT, it's not always thisperfect, linear, everything is.
But, on the flip side, when Ilook back at now, before when
(13:22):
someone would touch him withmilk, he'd be breaking out in a
rash and everything.
And now, he's able to drinkmilk.
He is actually to the pointwhere he's eating pizza, like,
ice cream, and loving.
life eating these things, andthen we just came back from a
trip and it was just like, I wasjust looking back, like
(13:42):
marveling at it because he wentand he had ordered a burger with
an egg on it and cheese and theworks and loved it.
And I thought he couldn't evenhave baked milk or the baked
egg, when he had had a challengeyears ago, cause his numbers
were down low enough.
He started having throatdiscomfort and just with the
tiniest amount of baked egg andI thought This is nothing short
(14:05):
of a miracle for us with this Sohe has also like taken a trip
like his eighth grade trip toWashington with his class
independent Navigated everythingadvocated for himself and did it
safely and just it's justincredible So we you know still
he takes the doses a certainnumber of days which is
(14:28):
basically the food a certainnumber of days to maintain his,
his desensitization but hisnumbers have dropped
dramatically and he's just, Imean, he's done amazing.
And so, I mean, Andrew too, Iguess, I talk about Dominic more
because of the severity thatDominic really had, but.
Andrew is just free eating tooand it's funny because Dominic,
(14:52):
I feel like he's always beenlike a foodie, but he just
couldn't have that stuff.
And like when we went to, abuffet at, the, at the Dominican
where we were and he was inheaven.
He could try all of thesedesserts, all of these things
and truly enjoy it.
And my biggest thing was just.
His safety, I mean that was thebiggest key for me with OIT was
(15:17):
just he is so much safer out inthe world He is, just
tremendously safer than he wasprior to that treatment
Dr. Amanda Whitehouse (15:25):
Your family is such a good example of
how it's all relative in termsof how complicated and how hard
our problems are because to you.
your third son, his allergiesseem like easy breezy compared
to Dominic having so many andbeing so reactive.
for some of us, one allergen isa lot to handle, but all that
you had on your plate, it'samazing how.
far you've come in terms of,being so free now.
(15:48):
And I love when you talk aboutOIT.
I think a lot of people,especially if they're
considering it and they haven'tdone it yet, they're really
weighing, the medical aspect.
And what's the risk of us havinganaphylaxis if we just avoid
versus doing OIT?
And what's, how much will he beable to eat?
And how many days will he haveto dose?
And I don't think people talkenough about What you're saying
(16:09):
in terms of the freedom and themental health, the, the
confidence, and such a differentlevel of calm for you and
everyone in the family now.
Renata Doerr (16:18):
Absolutely.
he never would have been able tomake that trip to Washington, D.
C.
for himself.
He, because we couldn't even goout to eat.
We couldn't even trust otherpeople preparing because it's
just the smallest amount of,cross contamination.
And now, it's given him thatconfidence, too, that I can do
this.
I can manage this.
I can, go to all these placesthat I want to go and do these
(16:42):
things and I, I don't have thelimits that I had before and he
feels safer doing it.
Now granted, sometimes teenagersdo not make the best choices but
for example, in his, one of hisclasses, they were brought in
foods from the world and Histeacher just kind of said, well,
those with food allergies, youknow what you're allergic to,
(17:03):
don't eat what you're allergicto.
However, people brought inthings that they made homemade.
There was no list ofingredients.
There was no anything and so hesaid, I thought I was eating a
lemon cookie, but they didn'ttell me there was walnuts in it.
I didn't know there was nuts init.
I thought it was just a lemoncookie.
So he, without obviously havingthe ingredients there, took a
(17:27):
bite of it and he's like, Well,I just, I tasted it, I knew
there was nuts in it, so I justspit it out and thank goodness
he didn't have any reaction, butI just, I said to him, thank
goodness for OIT because itmight, would have been a very
different outcome prior to thishad you mistakenly eaten
(17:47):
something with nuts.
Even if you spit it out, youwould still have ingested
enough, but then the other thingis, you have to be.
You just have to be more carefuland, I reached out to his
teacher and I said, it's justnot a safe practice to expect
the kids with the foodallergies, number one, to just
(18:08):
know what's in these things andthere was no ingredients listed.
They can't be making educatedchoices.
number two, really you shouldreconsider having people
bringing in nut products just ingeneral in any of these foods if
you have a milk or an eggallergy, like in the past,
Dominic would just avoid allbaked goods because you just go,
well, I don't know if there'sgonna be milk or egg in it, but
(18:29):
there's things like now thatthere's people making things
with like almond flour or youknow, cashew flour or there has,
there's peanut butter in it orsomebody thinks it's a.
White chocolate chip, but it wasa macadamia nut and there's just
things that are just harder tojust look at and identify as far
as not wise.
it was one of these things whereI said, I'm, I am glad that you
(18:53):
want to try new things.
However, we have to do it safelyand especially, when you don't
have a real list of what theingredients are, you shouldn't
just.
Assume, even if somebody said,Oh, it's a lemon cookie, that's
what it is, because to them itmay not make any difference that
there's walnuts in it, but toyou it does make a difference,
even with thinking about sendinghim off to college in a couple
(19:15):
of years, I'm so much morecomfortable with that than I
would have been, years agobefore OIT.
I mean, it was just reallychallenging.
That would have been that muchharder.
Dr. Amanda Whitehouse (19:29):
Well, and speaking of that, I have to ask
because I'm sure people canalready tell just from this
short conversation, you are somellow, you come across as so
calm, I think you and I startedconnecting more when we were
both doing the patch trials, wewere in different phases of it
in that clinical trial, but evenback then, before you started
this OIT journey, you havealways come across as It's so
(19:51):
calm and not anxious and not ahelicopter parent.
And I am curious for those whofeel always frantic, is it like
that on the inside?
is there something that you havedone to manage it so well?
Or what's your experience on theinside versus how it comes
across to us?
Renata Doerr (20:08):
I definitely have felt the stress.
I've definitely have felt theanxiety around, I used to love
family gatherings and all thefood.
You know, my one side is like,we're half Italian, and it's all
about the food and all thestuff.
And then when you have a worldof kids with food allergies, it
just changes that dynamic.
(20:30):
But I feel like what I've doneis I just try to be as prepared
as I can.
I mean, you try to think of whatare all the potential things
that you can, what you cancontrol, with the situation.
You do that to the best of yourability, and then I think I've
always tried to, with the kids,want them to Respect and
(20:54):
understand their allergies couldbe severe, but to not be in
constant fear of them.
To just try to controleverything that you can, because
that's all that we really, cando.
I don't want to project thisfeeling of being anxious about
all these things, because Idon't think it's beneficial.
I think sometimes it can cloudyour judgment.
(21:14):
I think it can, Just kind ofhave more of a negative impact.
I'm a planner.
I just try to control everythingI can.
Obviously, there's things thatare out of your control.
You think you've checked all theboxes and life is going to
happen and something differentis going to happen.
You think, like I thought evenwith his teachers, that they
were all aware of all those foodallergies.
Please let me know if there'sany food being involved.
(21:36):
And there was no one who reachedout, there was no one who, let
me know that food was going onor, all this kind of stuff.
I try to talk to others who arekind of, if there's something
ahead that I have never dealtwith before, reaching out to
people who have dealt with it isa huge benefit.
how did they deal with it?
What did they, you know, have toconsider?
(21:57):
Was there anything they didn'tthink about that came up that, I
should, prepare for and stufflike that too.
So I think.
That's what I've tried to do,for each different stage,
there's a different level ofchallenges when you have an
infant, a toddler, apreschooler.
Dealing with food allergies.
And the next level is when theyenter school, all the things
(22:18):
that go along with enteringschool and being more outside of
your bubble.
And then after that, as theyenter teenage years now, that's
a whole other level, of likeindependence and things like
that too.
And so I think it's been abenefit having people around me
(22:38):
that have gone through it.
I think it's been a benefit,sharing experiences with other
people and sharing theseresources and, Not doing it
alone.
Dr. Amanda Whitehouse (22:49):
I know a lot of that has been working
with, Greater Buffalo FoodAllergy Alliance, and with them
the schools and other, othercommunity, agencies and
organizations.
So I would love it if you'd talkabout that piece of things in
terms of what you've seen, whatyou think is the most effective,
or what there's the most needfor in terms of collaborating
with those resources that we aretrying to reach out and
(23:09):
communicate and control what wecan.
Renata Doerr (23:10):
Yeah.
whenever someone is goingthrough something challenging, I
just think to find your peopleis so beneficial.
To find the people who are atthat same level, who are with
that same struggle.
Because I think sometimes peopleare hesitant to open up and say,
I'm struggling with this, or, tonot.
(23:33):
Have something a hundredpercent, Feeling confident about
it, and they think of that as aweakness, but I really think it
is a strength to come forwardand talk to somebody about what
you're struggling with, and whatyour challenges are, and
especially when you have a groupwho are dealing with the same
type of challenges that you'redealing with, Opening up, then
(23:54):
other people will open up thatthey've struggled with this too,
you don't feel alone, you don't,feel like you have to reinvent
the wheel and start from scratchand do everything on your own
because especially when you're anewly diagnosed, child or
individual, it is sooverwhelming to try to Bye.
Start from, you know, having,just start from what are your,
(24:18):
basic foods that you need?
that are safe?
What are your basic, kind offinding your, footing and all of
that?
it's just so beneficial with,these support groups as far as
greater Buffalo, we've, we havea very active Facebook group.
So even those, in the past wedid have some in person
meetings, but I feel like around2020 and even slightly before it
(24:40):
started to dwindle as far as howmany people could come in
person, come together in person.
So, the online has beenwonderful because people can ask
questions in real time, I havethese allergies, have you found
Easter candy that is safe?
I have these allergies, whatbreads, what things have you
found?
And just being able to kind ofshare those resources with one
(25:01):
another, with other people whohave the same allergies, and not
have to do all the researchyourself is huge.
And then also, we, have doneeducational talks in preschools
and elementary schools aboutfood allergies.
We've been, working with ourlocal school district a lot over
the past couple of years.
(25:23):
And there is also power innumbers, I feel like too, when
you align yourself with otherpeople who want.
To make changes.
You are so much more.
You are so much more able tohave these changes made when you
were working in a group thanwhen you're just trying to
navigate it all yourself.
(25:43):
everything from even our localschool district.
You know, they didn't even usedto have like the allergens
listed on the website for any oftheir, school lunches.
So it was for years, I mean,Dominic was never able to eat a
school lunch.
I mean, I just brought him lunchevery single day and that's the
way it was.
(26:04):
But after we completed OIT and Ifelt like, he is safe to start
eating some lunches and havethat.
Social opportunity that he neverhad, If there's things that are
safe for him, I'd love for himto experience that at school.
I think back to when he was, inkindergarten and you're trying
(26:25):
to keep him safe.
And I said, just keep it adistance in between because they
spill the milk and they spillthe yogurts.
I mean, those things go flying.
and I went to visit him a fewdays into kindergarten and I saw
he was at a table.
All alone and how heartbreakingthat was because his whole class
was at one table and he was atanother table by himself and I
thought, this poor kid is he'ssafe.
(26:49):
just the social impact on that.
I just was heartbreaking.
Navigating that social andphysical, health.
Going back to now, with ourgroup that we kind of move
forward with, now we haveallergens listed.
Now, we didn't know that theycould actually make
accommodations in the cafeteria.
(27:11):
people who had gluten allergiesor intolerances could get gluten
free rolls or, you know, they dohave substitutes.
Dominic could have, Two juicesinstead of a milk that he could
have with the lunch and there'sjust different things that you
were not aware of before andwith working together to make
(27:32):
things more allergy friendly, tospread the awareness that these
accommodations are availablefor, students with food
allergies.
we're working, together.
We were for, people who comeinto new to the district.
to get resources of these are,resources that are available to
you, as a food allergic, studentin the district other things
(27:55):
that we've done is Epi training,EpiPen training and, different
schools.
We've also, attended a sciencefair to kind of any of the
students and it's amazing howmany.
Kids, how many are justinterested in learning about it,
interested in, being aware ofhow to give their friend
(28:16):
medicine if they needed to.
And we've had parents approachus who said, Oh my, this is
wonderful because my son has afriend with food allergies and
they drop them off and they say,Oh, just so you know, the
EpiPen's in the backpack.
But she was like, I've neverseen the EpiPen.
I've never used it.
I had no idea how to use it.
The time to know how to use itis not in that emergent moment.
(28:40):
And so, just trying to spreadawareness, trying to educate,
the more people that are EpiPentrained, the, there's going to
be lives saved.
That, people are safer in ourcommunity.
And then we've been also doing,advocacy work, within the group,
too, and trying to get moreEpiPens on first responder,
units and vehicles.
(29:01):
we've been, working on, writingto legislators about,
legislation that would protectthe food allergic community.
There's just a lot of thingsthat, we've been active in
doing, and I think, it's beenwonderful having, People who
want to make progress and makechange, and doing it together,
(29:22):
it's been so much moreproductive and so much more
beneficial, and we hope to justcontinue to do that throughout
our whole area.
Dr. Amanda Whitehouse (29:30):
I think it's great, and I'm appreciative
for you and the other folks whoare more active in getting that
stuff going, because obviouslythe change, the social change,
and the impact that we can haveis huge, I find for myself, for
all the people that I work with,when you get involved in that
way, it pulls you out of yourown focus on our lives and our
problems and what's hard for usand it, it really shifts the
(29:51):
perspective in terms of thisbeing part of a bigger thing
there's usually someone elsethat you can focus on and say,
okay, this is a bigger problemthan just what's happening here
in my house and in my life and Ithink that helps with the
anxiety The other difficultfeelings that we have about it.
Mm hmm.
Yeah, absolutely.
And it fits everybody.
So, one of the big projectsthat's newer again for the
(30:15):
Greater Buffalo Food AllergyAlliance is the 5K that was
started up again last year.
Do you want to talk about that?
Renata Doerr (30:22):
Yeah.
So, we are very excited.
It's our second annual 5K, andIt is gonna take place on May
18th at 10:00 AM in OrchardPark, and it's just a wonderful,
last year was fabulous.
We had over 300 peopleparticipate and people who are
part of the allergy communityand also the non allergy
(30:43):
community.
Community.
people who were just runners whokind of joined in and it's a
very fun family.
Friendly 5K that you can run,you can walk, There's music,
there's raffles, there's a lotof wonderful activities,
involved in there.
We do EpiPen training as well,while we're there, and then it's
just, I think, a great time, forfamilies to meet one another, in
(31:07):
person, for other kids to seethat there's other kids with
food allergies, like if they'rein a community or in a location
where there's not that manychildren who have food allergies
and they feel like It's onlytheir burden that they're
dealing with.
It is so nice for them to meetother kids and individuals with
food allergies and know thatthey're not alone.
(31:28):
And then just for, people to gettogether and support one another
and show up for one another andspread awareness.
So it's a great, great Lots offun activity.
And last year we were reallylucky.
We had Buffalo Bills coach SeanMcDermott as our race starter,
which was wonderful too, causehe has a family members with
(31:49):
food allergies and, yeah, itshould be a great time this year
as well.
Dr. Amanda Whitehouse (31:54):
One of the most impactful aspects of
the race last year for me andsome of us who were chatting
afterward were some families whoshowed up who were newly
diagnosed.
And to find the community inthat way, surrounded by,
celebration and making a bigdeal out of these awesome kids I
thought that was really special.
Renata Doerr (32:12):
I think, the in person part is It's so
significant, especially whenyou're newly diagnosed, to just
actually meet people with this,dealing with the same allergies.
And we did have multiple peoplereach out to us and, there's
been people who are like, wewant to be involved in this
event next year and we'd love tohelp because it was so impactful
(32:32):
for me and my.
Children to be there and to besurrounded by, other people with
the same challenges.
It was just wonderful.
And I, I don't think thatthere's, there's a wonderful, I
mean, it's amazing all thethings that we could do online
now and then, you know, the realtime feedback and all that.
But there is that element ofbeing in person and being face
(32:54):
to face with people and meetingthem, where they are and kind of
just.
Being able to connect in thatway.
Dr. Amanda Whitehouse (33:03):
and I know it took so much work from
those of you who were planningit for so long.
I just want to say thank you toyou and all the folks who put so
much time in because it reallyis impactful in a different way.
to see the adults Treating thisis important to see coach there
and talking about how importantit is and how we need to take
care of and be aware and educatepeople on allergies is so much
(33:24):
different than what they usuallyhear like, okay, take your
EpiPen.
We have to call the teacher.
We have to check theingredients.
All of the day to day managementthat we do sounds so different
from the energy and the languagearound.
You are also important to us andwe're celebrating and we're
doing this fun thing for you.
Just because it matters to us.,So, and the organization has
(33:45):
just become a 501C, right?
Renata Doerr (33:47):
Yes.
We just officially got 501Cstatus over the last few months,
which was wonderful.
And so we're officially a nonprofit, which is just going to
help us with being able toreceive donations so we can kind
of further our advocacy andfurther our impact, in the
community.
So, we're very excited aboutthat.
Dr. Amanda Whitehouse (34:06):
Yeah.
What would you tell other peoplewho are maybe on the fence then
about getting involved, lookingto see if they have a local
group in their city or area andthen maybe stepping up into
leadership
Renata Doerr (34:17):
when you're first, dealing with, The new diagnosis,
I just think it's very importantto find a support group,
whether, looking forward to seeif there's one that is meeting
in person in your local area, ifnot joining one on one of these
platforms, whether it's in aFacebook group or another
(34:37):
platform, even if it's online,just having someone to kind of
and other people who are in yoursame situation to Like I said,
share resources, go through ittogether so that you're not
doing this on your own, I thinkis key.
And then I think after you areat a point where you feel like,
(34:58):
okay, now I have my, routine, mythings are under control enough.
I think it's just important to,if you are able to, even in any
small way, any small amount oftime, it makes a difference.
It's amazing how how much of adifference you can make to other
(35:22):
people, and how much easier youcan make other people's lives
who are coming after you by,standing up for things that you
believe in, for Pushing forthese changes that you know will
make you, your children andother children safer, whether
it's at school or with anotheractivity, and being that
(35:43):
advocate, because you are yourchild's best advocate, and You,
can take that role that muchfurther to just advocate for
others who aren't able toadvocate for themselves.
Dr. Amanda Whitehouse (35:58):
Yeah, and it's reciprocal we come in and
out of phases where things areunder control and then maybe a
little bump or a shift and youcan contribute and then you're
still involved and connectedwhen you need the support back.
I had kind of reached that pointand then then started diving
into as you described like,okay, We're at a point where we
are going to try to take someaction on some of these things.
(36:19):
I want to thank you because wehad done another treatment first
and then we did that, we didpeanut patch clinical trial.
Then we also moved into OIT fromthere.
I had doctors kicking me out oftheir offices just for asking
about it.
I had, of course, family memberssaying, you're going to do what?
You know, nobody understands.
I knew I was doing the rightthing for my child, but to, to
(36:39):
know you and to say like, okay,there's another person out here
who is making me feel like I'mless alone.
A real person, whose face I cansee, lives in my community, was
so different for me, when I feltlike I was the only person that
I knew, other than strangersonline doing this thing.
So thank you for that.
and I think that speaks to theback and forth.
I remember coming to speak as apsychologist about mental
(37:01):
health, but then myself feelinglike, oh gosh, I'm so glad I saw
Renata, and I could ask herabout this, this, and that, and
um, It, it, it's so, it's justso rewarding and helpful to be
connected and, and we can'talways anticipate what that's
going to look like or who thatwill show up in the form of.
Renata Doerr (37:19):
Yeah, absolutely.
And then I think as our kids aregrowing up too, it's amazing.
Like Dominic, he's 15 now and hejust joined FAIR's, teen
advisory group.
And.
He wants to become an advocate,kind of now that he's kind of
seen that changes can happen andthe benefit it can have.
(37:41):
He's like, I want to beinvolved.
And so he just, started withthis group and by meeting with
other He's like, I think I wantto start an allergy awareness
club at my school and you knowwhat we could do mom, we could
actually go and talk toelementary school kids and
(38:01):
middle school kids and we cantell them about how to navigate
these different things or whatyou should do in a situation
when this happens and we can,help them.
And it was just amazing, to hearthat.
He has.
He's taken this challenge in hislife, and now he's wanting to
help others with it, and, it'sjust awesome.
Dr. Amanda Whitehouse (38:23):
It is, and it's no surprise, because
he's seen his mom doing so muchwork on that, and, and how
powerful for kids to hear thatfrom other kids.
It's one thing when we adultsare, are lecturing them or
showing them things, but to talkto other kids who understand is
really powerful.
That's awesome.
Yeah, I'm glad your kids are alldoing so well now, I think it's,
I think people appreciatehearing experiences with OIT and
(38:46):
with other treatments because Iknow it can be intimidating.
There's a lot of information outthere, so I appreciate you
sharing that piece of things foreverybody who's listening, too.
Renata Doerr (38:54):
Absolutely.
I mean, like I said, if it'ssomething that somebody is even
remotely interested in findingout more about, you know, start
doing research about it, starttalking to other people or
reaching out to people who'vedone it so that you can get more
experience, more information andfeel more comfortable about it.
(39:14):
But for us, it really has beentruly life changing and a
blessing and I'm so thankful forhaving done it.
Dr. Amanda Whitehouse (39:22):
That's so amazing.
The last thing that I like toask everybody is tell us
something positive about foodallergies.
Renata Doerr (39:28):
So I would say we've had lots of, positive
things.
I would say this new, withDominic talking about, well,
maybe I want to go into alsopolitics because maybe I can
help with legislation for,people with food allergies.
And, Having our children becometheir own advocates, becoming an
(39:49):
advocate, I think, That's been adefinite positive change.
I think other things would be,we're so much more aware of what
is in the food that we'reeating, where before food
allergies, we didn't, you didn'tnecessarily need to read labels
like we did, and just kind ofthat was, something where we
started, paying more attentionto for food allergens,
obviously, but then also justbeing aware of what is in our
(40:13):
food, and what we're ingesting,and what Maybe we can make
better choices for otherreasons, too.
So I think, there's beendefinitely positives.
The rainbow from, the challengesthat we've faced.
Dr. Amanda Whitehouse (40:28):
I agree 100%.
Renata Doerr (40:30):
Well, thank you so much for talking today Thank
you.
I think it's amazing that you'redoing this and I think it's
awesome that you can impactpeople.
further than the people whoyou're seeing personally one on
one by, putting out this podcastand putting out this information
and sharing these really amazingpeople, who you've had on and
the information.
(40:50):
I think it's awesome.
So thank you for doing that.
You'll find links to everythingRenata talked about today in the
show notes.
And if listening to ourconversation has created some
motivation in you to take someaction, here are a few ideas for
you.
Number one, if you're in theWestern New York area, you can
find the Greater Buffalo FoodAllergy Alliance on Facebook
(41:11):
and@gbfoodallergy.org.
You can sign up for our upcomingallergy awareness section 5K on
Sunday, May 18th, and you'llfind the link to that in the
show notes.
You aren't in our area, look fora local group near you and see
what's out there.
And if you have one but haven'tbeen involved, consider checking
out what events are going on.
It's easy for us to think thatthe less we think about our
(41:33):
allergies, the less stressed weare about them, but it's
actually in connecting withother real life people and
building community around themthat we feel safer and more
confident.
And number three, if you'refinding the podcast helpful and
you'd like me to speak to yourlocal allergy organization,
please don't hesitate to reachout.
I.
Really enjoy presenting for andengaging with groups like this.
(41:54):
Obviously the work is verymeaningful for me and I'd be
happy to talk to you about how Ican do that for your specific
organization.
The link to my contact page isin the show notes.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
(42:14):
If you have any questions aboutyour own medical experience or
mental health needs, pleaseconsult a professional.
I'm Dr.
Amanda White house.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
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If you eat, sleep, and breathe true crime, TRUE CRIME TONIGHT is serving up your nightly fix. Five nights a week, KT STUDIOS & iHEART RADIO invite listeners to pull up a seat for an unfiltered look at the biggest cases making headlines, celebrity scandals, and the trials everyone is watching. With a mix of expert analysis, hot takes, and listener call-ins, TRUE CRIME TONIGHT goes beyond the headlines to uncover the twists, turns, and unanswered questions that keep us all obsessed—because, at TRUE CRIME TONIGHT, there’s a seat for everyone. Whether breaking down crime scene forensics, scrutinizing serial killers, or debating the most binge-worthy true crime docs, True Crime Tonight is the fresh, fast-paced, and slightly addictive home for true crime lovers.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com