May 6, 2025 • 51 mins
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Receiving a food allergy diagnosis for your child can feel like the world has suddenly shifted beneath your feet. What was once a simple trip to the grocery store now involves scrutinizing labels, and family gatherings transform into potential hazard zones. But here's the truth: with the right plans in place, you can navigate this journey with confidence rather than fear.
In this heartfelt episode, Dr. Alice Hoyt welcomes back co-host Pam Lestage to share five essential plans every mother new to food allergies needs. Drawing from both medical expertise and lived experience as food allergy moms, they offer a framework that puts you into the driver's seat of your child's food allergies.
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This podcast is the official podcast of the Hoyt Institute of Food Allergy. Information on, within, and associated with this site and Food Allergy and Your Kiddo is for educational purposes only and is not medical advice.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Hello and welcome to the Food Allergy and your Kiddo
Show.
I am your host, Dr Alice Hoyt,along with my amazing co-host,
Ms Pam Lestage.
Hello, Pam.
Speaker 2 (00:15):
Hello Dr Hoyt, how are you?
Speaker 1 (00:20):
How are you?
It's kind of funny because youdon't usually call me Alice
anyway.
Speaker 2 (00:23):
I don't, and it's been a minute since I've been on
the podcast so I, like I forgotto switch off Welcome back.
Speaker 1 (00:34):
Yes, and you don't call me Alice, you don't call me
Dr Hoyt, but you call me by myhigh school nickname, which is
AJ.
So, anyway, though, enoughabout our tangent number one.
But today I'm really excitedabout our show today and I'm
really excited that you'rejoining me for it, because the
time we're recording this, it'scoming up towards Mother's Day.
(00:57):
It's also coming up towardsFood Allergy Awareness Week, so
I really wanted to do an episodewhere we could talk about our
top five plans for moms who arenew to the food allergy world.
So moms who have kiddos whowere recently diagnosed, little
(01:18):
babies, older kids, whatever thecase may be.
But really, if you're a mamaand you are new to this world of
food allergy, this episode isabsolutely for you.
And also moms and dads, right,but we're going to be
specifically talking to momstoday.
We're both moms, but even ifyou've been in the food allergy
space for a while, these plans,it's going to be important just
(01:41):
to make sure that you have themin place.
What do you think, pam?
Yeah, I think it's always good,important just to make sure
that you have them in place.
What do you think, pam?
Speaker 2 (01:45):
Yeah, I think it's always good, especially the
longer you get into your foodallergy journey, to reevaluate
your plans and just make surethat everyone's on board,
because I think that the longeryou're on it, the easier it is
to sort of kind of step back Notstep back, but just it's not in
(02:07):
the forefront of your mind allthe time, as it is whenever
you're a brand new food allergyparent and it's always important
to just sort of refresh those.
But as a new parent, a newcaregiver, a new sibling, it's
always important to just have aplan in place, because I think
that when we have a plan inplace then all of the stressors
are easier to compile into onelittle box and we can handle
(02:31):
them.
And we'll touch base on thatlater, but it's just important.
Speaker 1 (02:36):
I totally agree with you and I think you know, the
longer I am a mom, the more Iappreciate having plans for
things.
Plans can change right, we haveto be flexible, but just having
a plan, having a strategy forhow we're going to approach
something, is just makes it moredoable.
Speaker 2 (02:55):
Makes it more doable and I think when you're dealing
with little kiddos, kids needstructure and kids need plan and
everybody's family looksdifferent and the way that we
structure our family may not bethe way that you structure your
family, which is totally okay,but there needs to be a little
bit of cohesiveness among thegroup for everything to just
(03:16):
sort of work and be a happierjourney than a scary journey.
Speaker 1 (03:24):
Less stress, more joy .
Speaker 2 (03:25):
Yes.
Speaker 1 (03:28):
That is the slogan of my practice right Less stress
and more joy.
I love it.
Okay, so we're going to gothrough this list and it's our
top five, but before we came onrecording, we were already
talking about how we'll gothrough these in an order.
They're not really in an orderof priority, because they're all
(03:50):
important and that's what wewere kind of like going back and
forth.
Well, this one here, this one,they're all important.
Speaker 2 (03:56):
Yeah, they're all important and, again, every
family is different, and so howyou structure these five tips
will look different, but some ofthem too can kind of and you'll
see as we start talking can allbe kind of done at once or
around the same time, and so itreally is just.
These are the first five thingsthat we recommend you tamp down
(04:18):
before you really start thatfood allergy journey or well,
you're starting it already, butbefore it kind of starts moving
along.
Speaker 1 (04:27):
Right, no, totally.
And if you get these plans inplace, then I feel like you will
be more in the driver's seatthan allowing the food allergy
to kind of dictate things,because you'll have less
surprises, because you will haveplanned for these things.
Yeah, so we're going to goorder like five, five, four,
(04:48):
three.
Two, one, one, two, three, four, five.
Speaker 2 (04:49):
I don't know, we're just going to say they're five
of them.
Speaker 1 (04:51):
They're five of them.
The first one is to have a planfor what to do if your child
has another reaction.
Speaker 2 (05:00):
Yeah, which is that's like the first thing.
This, this one.
We will say it's the firstthing you should do.
On you know how the allergicreaction goes right.
Like some people have anallergic reaction and they see,
they realize that.
For instance, here's our firstallergic reaction.
I gave my child peanut butter.
I noticed she started gettinghives.
(05:20):
Um, this was 12 years ago.
I noticed she started gettinghives.
This was 12 years ago, 13 yearsago.
Back then it was give Benadryla watch, right?
That's not what we did, we epi,right, that's not what we did,
but that's what we did back then.
And so I recognized that it wassome sort of weird reaction.
(05:42):
I gave her some Benadryl.
My dad happens to be aphysician.
I took her to his office.
She sat down, we watched herfor a little while.
We went on our way.
We were recommended to go to anallergist.
That is not necessarily how italways happens.
Sometimes your first reactionwill send you straight to the ER
, and so whether you're dealingwith your first reaction at home
(06:03):
, you're dealing with it atschool, you're dealing with it
at the ER.
The first thing you need to do,once you get that clearance
that your kid is okay, is whatdo I do next time?
Speaker 1 (06:17):
A million percent.
If your kiddo goes to the ERwith a situation like what Pam
described, that's ananaphylactic or IgE-mediated
food allergy and that should betreated with epinephrine.
Of course, if you're having areaction for the first time, you
might not have epinephrineright.
Most people don't haveepinephrine hanging around right
(06:38):
, and so you want to seekmedical advice promptly.
So you want to seek medicaladvice promptly and before you
leave that emergency room andthis is something we're doing I
have my allergist hat on, whichI guess I'm always wearing my
allergist hat here on thepodcast, but, like I guess my
allergy like medical educatorhat is more of what I should
(06:59):
specifically say to mycolleagues who are not
allergists.
There we go.
That's what I'm intending to sayis we need to do more
continuing education fornon-allergists to provide proper
guidance after an anaphylacticreaction, because sometimes we
find that even though it's 2025,right now, sometimes ERs still
(07:21):
are not prescribing anepinephrine autoinjector after
what clearly is in the paperworkis diagnosed as an allergic
reaction, and so that's somework we need to do.
But it's important as a momthat you have a clear plan for
what to do in case your childwere to have another reaction
and also how to prevent anotherreaction.
(07:43):
And so, like in Pam's case,like she, she could pretty
clearly see that or tell me ifI'm wrong.
But it seemed like you couldpretty clearly see like you had
just given her peanut as kind ofa new food, I think and she
started having a reaction to thefood you had given her.
So you knew, okay, well, I'mnot going to give her peanuts.
Speaker 2 (08:12):
Oh yeah, until an allergist tells me it's okay.
Yeah, and it was.
You know, I think, as a new momand I mean I was a new mom a
long time ago, so I don't knowwhat it's like to be a new mom
now.
But you know, back then oh gosh, I'm about to age myself but we
didn't really use Google or,you know, the internet to figure
those things out.
We bought books and, um, I'mnot that old guys, but like you
know, like it's just, it's kindof what it was.
(08:33):
And so we had all the books likewhat to do, and the book said
you know, these are the signsthat you look for in case of a
reaction.
You give one foot, you know allof all of those things.
And a lot of thoserecommendations have changed.
And when I had my daughter itwas still you wait till a
certain age and you get andwatch, and that's kind of what I
did and I think, you know,mommy, intuition kind of comes
(08:54):
into.
I'm a firm believer that yourgut is constantly telling you
stuff and it was a gut feeling.
I was very and very blessed thatI have medical people around me
, and so I did not go to theallergist right away, because it
wasn't necessarily recommendedto me at that point.
(09:14):
We were told to go, you know, ayear later.
But now, obviously, knowingwhat I know, that's what would
have been my first call.
It would have been an allergist, but I knew that she couldn't
have it anymore.
I need to have an EpiPen.
I knew what to watch for, andso I was lucky in that way.
And so if you leave the ER andyou're not getting that feedback
(09:37):
, or if you leave yourpediatrician and maybe they
haven't met a doctor employeethat's been able to sort of
provide that continuingeducation, then it's your job,
as you know, as the parent, totry to find that, to keep your
child as safe as possible, and Ithink we do that as parents
anyway.
I think that we try to find allthe ways to be able to make our
(09:57):
child as safe as possible.
So it's just sort of in adifferent way, a different
structure.
Speaker 1 (10:02):
Now I'm totally with you on that and you know we're
seeing more FPI's food proteininduced enterocolitis syndrome,
which is um profuse vomiting oneto four ish hours after
ingesting the food.
And it's much more common in inbabies than in older kiddos and
it can happen not necessarilythe first time they eat the food
(10:24):
, sometimes even the first time.
Um same with anaphylactic foodallergies.
Sometimes it's the first time,sometimes it's not the first
time.
There's no magical number alsofor when a food is safe.
Basically if a kid's had a fooda few times and has tolerated
it, then we think it's usuallypretty safe.
Rarely do we see anaphylacticfood allergies present like that
(10:47):
where someone's had peanutbutter multiple times and then
all of a sudden, especially inkids, where they can't eat it.
But that's also why we sayearly incorporation of allergens
, not just early introductionbut early incorporation,
especially in high-risk kiddos.
Kiddos who have already have afood allergy or have severe
eczema should start trying theseallergens peanut as early as
(11:09):
three to four months, inage-appropriate forms of course,
but then keep it in the diet toteach the immune system to
tolerate it.
Early introduction is like awhole nother podcast episode.
But this also brings me back toour list, which the next thing
on our list is to see anallergist.
(11:29):
And so I'm so interested, pam,because you said something I
think our listeners are probablywondering like you weren't
advised to see an allergistuntil the next year, and I've
definitely had patients presentto me who have said, oh well,
such and such doctor was an ERdoctor or pediatrician, said,
like usually an ER doctor not somuch pediatricians but said, oh
well, you don't even need to goto the allergist until they're
(11:52):
two because they won't do anytesting until they're two anyway
, which is inaccurate.
But I will also say thatallergists and more than lab
orderers 95, 99% of me making adiagnosis and a correct
diagnosis is the history, isputting down and talking with
(12:15):
the family, and that is the bestway for me to determine what is
safe for your child and what isnot safe for your child, so
that, ultimately, when a familyis leaving my office, they know
what is safe, what is safe foryour child and what is not safe
for your child, so that,ultimately, when a family is
leaving my office, they knowwhat is safe, what is not safe,
or we make a plan by which we'regoing to tease that out.
But I wonder, pam, from yourexperience back then about not
(12:36):
seeing the allergist until thenext year, kind of like, would
you mind elaborating a littlebit more on how that happened
and what you would do if that,if, if that were the case today?
Speaker 2 (12:46):
Um, yeah, sure.
So we went to the pediatricianright away.
It happened close to her twoyear birthday, so we were
already going to thepediatrician and you mentioned
it to her and she said oh well,and, mind you, we don't see this
pediatrician anymore, but notbecause of this, but we have a
(13:08):
wonderful pediatrician.
Just in case she happens tolisten to this, it's not you.
Speaker 1 (13:14):
You're such a nice person, Pam.
Speaker 2 (13:20):
We love our pediatrician.
Now the time basically said ohwell, it sounds like she had an
allergic reaction.
Here's a prescription for anEpiPen.
Go fill it.
Don't give her any peanuts.
Come back for her nextappointment and at that point we
will do a food challenge.
And I said okay.
(13:40):
Again, the pediatrician saidthis yeah, wow.
Speaker 1 (13:45):
And I'm sure I'm saying wow, because usually
pediatricians don't do foodchallenges number one but number
two.
You know, back in the day, backat that time of diagnosis, that
management plan was perfectlyrespectable.
(14:05):
Today you have your treatmentsfor food allergies, so that
would not be the best, but it'snot super far off.
Yeah, interesting, she wasplanning, or he was planning, to
do a food challenge, though.
Speaker 2 (14:27):
Yes, but we'll get to that in a sec.
So basically, she just saidhere's your epi don't give her
peanuts.
She didn't give any guidance.
She didn't say what to watchout for.
Don't give her peanuts.
She didn't give any guidance.
She didn't say what to watchout for.
She didn't um, you know, saythis is how you avoid it.
So all of the education that Igot was me figuring it out.
You know, it was me researchingme, um, talking to you who I
think you were starting yourresidence being your fellowship.
Speaker 1 (14:51):
It was very.
I wasn't an allergist.
Speaker 2 (14:54):
So this was just me talking to my best friend, who
happened to be in my schoolsituation.
My dad, obviously, is a doctor,so that's how I got my
information.
So the next year when she'sturning three, I call the office
We've had a great year and Isaid, hey, we're ready to
schedule that food challenge andshe said, oh well, we can't do
(15:15):
that here, that's dangerous.
Here's the allergistinformation.
Speaker 1 (15:21):
What every mom wants to hear, right.
Speaker 2 (15:22):
And so I think at that point it really hit me that
this was more than just, oh, weshould avoid the food, because
I was not really educated by heras to like, like, we didn't
have an emergency action plan,none of that, anyway.
And so at that point, when thathappened, my final red flag
went up and I was like this isnot the care my child needs.
(15:48):
And so, luckily, I was able toget a recommendation for a
wonderful allergist and we wentto see him, and that's when we
did all the testing the skin,the blood, the education that we
needed.
And at that appointment, I meanI still remember driving home
like in tears with her in theback, because it made it real,
you know, I think seeing hermakes it real and I think the
(16:11):
sooner it made it real, you know, I think seeing your health
makes it real and I think thesooner, the sooner it can become
real and you know what you'retrying to tackle, the better.
And so, looking back when ithappens, whether it's the ER or
your pediatrician or your family, you know, physician, even if
they don't recommend seeing anallergist, go see an allergist.
(16:33):
Go see an allergist because youwill leave that appointment
overwhelmed.
But you, you should be armedwith the tools on how to keep
your child safe, um, what toavoid.
You know all of the things, allof the things that you talk
about, that we've talked abouton this podcast.
Again, I think my experience isunique because I am surrounded
(16:57):
by so many medical people that Iwas able to not necessarily
need that valid not thevalidation but need the extra
from the allergist in terms ofwhat I was getting into.
But having a clear diagnosisfrom him was really what put my
(17:21):
food allergy hat on, made mesort of the silent advocate and
sometimes the loud advocate thatI became for my kid and I think
that's a fantastic advocate,and you're so research-minded
anyway that you were, and you'regood at finding good sources
too.
Speaker 1 (17:41):
So I mean you've done a fantastic job.
Speaker 2 (17:45):
It is to say that until I saw the allergist, my
sources were things likeFacebook groups, because that
was sort of the only socialmedia that we had at the time.
And you know, mommy, blogs andsometimes and we've talked about
this so many times on the blogsocial media can be a great tool
.
It also be a really scary tool,because sometimes your own
(18:07):
fears are reflected in whatyou're trying to share and then
it can kind of turn into thisfear-mongering situation and so
again get your information infront of a food allergist
instead of the internet, whichwas, you know, which is kind of
what I did.
Speaker 1 (18:24):
Yeah, and your allergist can also tell you some
good, good resources, livedexperiences You're absolutely
right From Facebook groups andhearing other people's
experiences, what you're sharing, lived experiences are so
important.
They can absolutely help us asmoms.
Right, and just kind of hearingit of what's been your
(18:44):
experience you know that'salways just like can be very
helpful.
But when it starts going intolike the sensationalization and
fear mongering, that's when weneed to reel it back in.
And if you're listening to thisand you've heard some like scary
stuff about food allergy andyou're wondering, oh my gosh, is
that going to happen with mykid or whatever, the first thing
you need to do is either calland schedule a followup with
(19:06):
your allergist or send them amessage or or something.
That's where you want to getyour personalized,
evidence-based information from,specifically about your child.
So seeing an allergist is socritical and a lot of people
don't really know to see anallergist.
And see an allergist.
As soon as you're given apreliminary diagnosis whether
(19:28):
it's the ER or a pediatrician orjust you're seeing your child
have some sort of reaction youwant your child to be evaluated
by a healthcare professional, adoctor, immediately.
But you also your next step,once your child is safe is to
get in with an allergist.
Speaker 2 (19:44):
And continue seeing them.
Speaker 1 (19:47):
Yeah, especially now, especially now there are so
many treatment plans available,different strategies, different
whether it's oral immunotherapy,sublingual immunotherapy,
omelizumab their avoidance isstill, absolutely still, a good
treatment option.
But being able to have thosediscussions with an allergist
who literally has done so muchtraining to be able to take care
(20:10):
of your child, that's who youwant to get this information
from.
Which brings us to the nextnumber three on the list is have
a plan for testing.
So, whether it's skin pricktesting, blood testing,
ingestion challenge, just likePam, you thought you had a plan
(20:30):
and then you're like, wait, I'mnot the plan.
Okay.
I find that when I work withfamilies and we sort of map out
what's going to happen next, wegive them the plan, I give them
the anticipatory guidance.
Then we are all working towardsthat common goal together and
there's no like oh, what's goingto happen next?
(20:52):
I don't know.
There's no.
I mean, I hate that feelingwhen I have a doctor situation
and I'm like, oh well, what arewe going to do next?
Like I I try very hard to makethat never happen, but sometimes
, like you're just in theseappointments and you know, maybe
you don't have your list.
Always write down your list ofquestions.
Oh my gosh, you know, and makesure, like you have that paper
(21:14):
list out paper not just likepulled up on your phone, but
like paper, because it's just soeasy to turn the paper around
and show it to the doctor sothat they know what your
questions are and then they canmake sure you get them answered.
But with the testing skin pricktesting, blood testing,
ingestion challenge you get themanswered.
But with the testing skin pricktesting, blood testing,
ingestion challenge whatever thecase may be, having a plan like
(21:37):
, let's say, your child isallergic to peanut and y'all are
not in the season of life to dooral immunotherapy or
subliminal immunotherapy, andyou're like you know what?
I just want to maybe wait.
Can we just wait a few monthsor six months or a year and see
what's going on?
Then your plan would be toretest in a year.
We don't want to retest ifwe're not going to do anything
with that information.
Really, like you don't want tojust test, to test.
(21:58):
You want to have a plan like,okay, you're doing the test and
then, if it's this number or ifit's this result, you're going
to do this.
If it's this result, you'regoing to do this.
How do you feel about testingPam and having a plan for
testing?
How do?
Speaker 2 (22:11):
you feel about testing Pam and having a plan
for testing?
I think as a mom, you know,early on I wanted but again,
this was a long time ago.
I wanted to see the numbersbecause I like to see things
happening and I like to have theinformation.
(22:32):
But then I quickly realizedthat A it's traumatic for your
kid to constantly be testing andwe weren't constantly testing
her, but you know it was goingto the allergist and just being
told she's still allergic.
And then kind of walking outwith a new epi prescription at
the time.
Just I don't know, I just Iwanted something.
I wanted something Fromobjective data.
Speaker 1 (22:54):
We like objective data and so, yes, if you have a
child with an anaphylactic orIgE-mediated food allergy,
there's lab tests, there's skinprick testing.
If you have a child with FPIES,there's not any testing, it's
all clinical history and you'relike, okay, well, they just had
a reaction.
So we're going to wait, atleast a year likely to
re-challenge.
Or maybe, if it's egg or milk,then we'll try some baked
(23:16):
products to try to do some sortof modified ladder for FPI's.
Again, this is stuff you'rediscussing with your allergist.
I'm an allergist but I'm notyour allergist.
So talk to your allergist aboutwhat we're discussing.
One, one more, one more, becauseour EOE moms who are listening
eosinophilic esophagitis, that'sone we're having.
The management plan, thetesting plan, can be kind of
(23:39):
like wait when are we going tore-scope?
Because with EOE, the only wayto get that diagnosis,
unfortunately right now is to doan endoscopy and have tiny
biopsies in multiple locationsof the esophagus.
Eoe is basically eczema of theesophagus and the way we
diagnose it is with an endoscopywhere a GI doctor goes down in
(24:00):
the esophagus, your kiddo isasleep under an
anesthesiologist's care and doestiny, tiny little biopsies and
we're looking for these types ofallergy cells called
eosinophils in the esophagus.
Eosinophils should never be inthe esophagus and so we're
looking for a certain number ofthem and then, if they're there,
then we're considering thisdiagnosis of EOE.
(24:21):
And then we do some things.
Do we do this medication or dothis diet plan?
And then when do we re-scope?
And that is always the questionwhen do we repeat the endoscopy
?
Because, as painful and I'm amom of a five-year-old and a
two-year-old and labs are atotal bummer, right no one likes
(24:47):
getting their kiddos' labs done, or a lot of kiddos don't like
skin part testing, right butlike having to do a sedated
procedure.
I mean that, you know, likehaving a plan for these tests
helps, helps us as moms walk theroad.
I would say I'm sorry Iinterrupted you.
Speaker 2 (25:01):
Maybe you interrupted me or maybe we were just we
just interrupted each other, butI will say, just bringing it
back to how I feel about testingand having a plan, is, the more
I learned and the more this,the world of allergy changed,
the more I realized that thenumbers, the numbers, are
(25:23):
telling me something right, butlike they're not giving me the
whole picture.
And and because we were veryhappy with avoidance, um, um,
oit was fairly new not fairlynew, but it wasn't being done
the way it's being done now.
Um, it just wasn't in the cardsfor us and we, so we were happy
(25:43):
to just go to our allergist andand have that conversation with
him and and he would say youknow, we're just not going to
retest this year, we're, youknow we'll, we'll see what the
landscape looks like next year,and so, okay.
So that's what we did.
And he reminded us of all ofour things, gave us new
emergency action plans, any newdata.
You know he would relay thatinformation to us, and so I do
(26:05):
think that, again, it'simportant to go yearly to your
allergist.
At one point we were going everynine months.
I don't know why.
That's just the way it washappening.
I don't necessarily think thatwas them, I think it was just my
scheduling.
And so now, the older she gets,you know, when discussions
started happening about do wewant to proceed with any of
(26:27):
these new therapies, we testedagain and we saw, and we saw
that numbers kind of still lookthe same.
And so to me at the beginning itwas more about how much
information I can get.
But again, remember, the answerthen was still not what it is
now.
I think new allergy moms nowjust just need to have a plan in
(26:51):
place, and that doesn'tnecessarily mean doing new labs
all the time or doing newtesting all the time, but when
appropriate.
And even that to me, not as anew allergy mom just in the last
five years the landscape haschanged so much that every time
I went into the allergist I wasexcited to see how he felt about
(27:12):
the new things.
And then, you know, listen tothe podcast or do my own
research and kind of see whatyou had to say or what others
had to say, and then take all ofthat information and make a
plan based on that.
And it's been pretty empowering, I would say, to just sort of
get all of that from him, fromyou, from you know the world of
(27:34):
evidence-based allergyinformation and it just almost
kind of gives a peace of mindand I could talk about this, as
you know.
You know we're transitioning tothe adult care model and so
that's a whole new set of thingsthat we could talk about that
forever, but it's just importantBottom line.
(27:54):
I spoke so much, but it's justimportant to have that plan in
place, just also for how youfeel about all of the things.
Speaker 1 (28:03):
Yeah, a million percent.
And you mentioned transitioningto the adult care model, which
is basically when you know she'sgrowing up and she's going to
be scheduling her appointmentsand she's going to be refilling
her medications, and so it'simportant to start thinking
about that well before it'sactually time to do it.
(28:25):
And hats off to you guys.
You guys do a beautiful,beautiful job, guys.
You guys do a beautiful,beautiful job.
And so all of this kind ofbrings us to our next, which is
how to prepare other people totake care of your child, and so
one thing that y'all are goingto start thinking about is when
(28:46):
she goes to college and makingsure that she has access to safe
foods right, a lot of kidsthese days are required to
purchase a meal plan and makingsure there's safe options there
and having a plan in place forhow to communicate that to the
school.
I've definitely written lettersand such for those types of
situations.
But things like camp, thingslike just going to school,
(29:09):
having that emergency actionplan as we've talked about a few
times now, whether it's ananaphylaxis action plan for a
kiddo with food allergy or anemergency action plan for FPIES
or an accidental ingestion planfor kiddos with EOE Like what do
you do if somebody else istaking care of your kiddos which
happens all the time, right?
(29:29):
I mean taking care of yourkiddos, which happens all the
time, right?
I mean whether it's early childcare or school or baseball or
camp or whatever the case may beanyone who's responsible for
your kiddo you want them to havea very clear plan on how to
prevent, recognize and respondto an allergy emergency.
What say you, pam?
Speaker 2 (29:52):
I learned very quickly that I needed to have
all of my information in oneplace, and so it made it very
easy.
Every time I dropped off atcamp or at school or with a
family member is I had a letterfrom my allergist kind of
stating.
You know the situation because,especially early on, you know
they may not want the epi on thechild, they may want an adult
(30:13):
to have it.
I always wanted it on my childbecause it's on my child.
You know exactly where it is,and so I just had a letter where
he would you know explain thesituation and explain that he
was comfortable with that.
I had pictures.
Speaker 1 (30:27):
Epinephrinerine.
Your child's emergencymedication should always be
immediately accessible to yourchild.
Should not be locked.
Should be in a secure locationif not actually on their person.
Speaker 2 (30:41):
Should be immediately accessible always, and in
louisiana there are laws forthat.
Yes, in both states.
Speaker 1 (30:50):
There are laws Now do all schools recognize realize?
It never ceases to surprise methese days, despite the laws on
the books, sometimes someschools non-school entities are
still just not where they needto be regarding being up to date
.
And sometimes it comes tohaving to have discussions with
(31:12):
that entity's attorneys to getthe language changed and for
them to then realize, oh, it'sactually a liability if I don't
change our current outdatedpolicy.
And then, once they realizethat it's much smoother and
they're actually usually prettygrateful to the family for
bringing it to their attention.
Speaker 2 (31:32):
Anyway, there's a tangent no, I think it's
important because I think that'spart of sort of like my toolkit
is that I was always armed withwhat I knew our rights were.
And so when it came to school,so before we got to school, I
always had pictures, because Ihad pictures of what she looked
(31:53):
like, with a reaction as scaryas that is, and so I would say,
look, these are some.
It's not always going to lookthis way, but if you see this on
her face, you know that couldbe a sign.
And so I had pictures, I hadthe letter, I had the emergency
action plan, I had herlife-saving medication, I had
(32:14):
the emergency action plan, I hadher life-saving medication, um,
and I was armed with the lawsand with my rights.
Um, because I did a few times um, run into school situations
where, um, they weren't up todate and I was up to date and
there were discussions there tomake sure that they knew that.
I knew my pig could have her,you know, her epinephrine on her
person and it didn't need to belocked away.
(32:35):
And because I knew my rightsand her rights, um, it was
always an easy conversation.
I mean, obviously there wassome back and forth, but I think
that's also.
Another great tip is that youdon't always need to be on the
defensive, because sometimes,when we're on the defensive.
(32:56):
Our emotions can get the best ofus.
And you can't really haveproductive conversations with
people that you want to takecare of your child.
I'm not saying, don't beemotional.
It's an emotional topic andwe'll touch on it in a second.
An emotional topic and we'lltouch on it in a second.
But if you're armed with theinformation, if you're armed
(33:19):
with her medication, if you'rearmed with a good plan, then
you're giving that and you're,you're taking hold of that power
and you're armed and you knowwhat to do, and it can just be a
simple conversation hey, listen, if you need to do your
research, that's fine, but thisis how you take care of my child
.
Speaker 1 (33:30):
Right.
Speaker 2 (33:30):
And this is, you know how to keep her safe, because a
safe kid is better than a kidthat you have to call an
ambulance for.
Speaker 1 (33:37):
Absolutely.
And at that point, when youhave all of that lined up, you
have objective information thatyou are passing along.
This isn't just you saying, ohhey, can we talk about this?
And not having anything fromyour doctor, not having anything
, you not coming to the table,understanding the your rights,
your child's rights.
So absolutely, oh my God, andyou're you're a master at that
(34:01):
of you know the squeaky wheelgets the grease right.
So we don't ever want to likefade into the background and
just assume a school is doingeverything correctly, even if
you know other great allergyfamilies that go to the school.
And you assume a school isdoing everything correctly, even
if you know other great allergyfamilies that go to the school
and you're like, well, they gothere and I'm, I guess this plan
is okay because they go there,Right, never assume any of that.
It's different.
Speaker 2 (34:21):
For everybody and like when it comes to like camps
and schools.
We always provided safe snacksfor her because it made her feel
comfortable.
We never made it and I thinkthis is important, parents we
never made it as if she wasdifferent.
So she got to sit with herfriends and have a snack and she
usually had like a buddy thatate next to her that we knew
(34:44):
weren't wasn't going to eatsomething she didn't have, but
we never wanted to isolate her,because it's not her fault that
she has an allergy.
She was going this way, and itcan sometimes seem as a
punishment whenever that childis excluded.
Now, did she have times whereshe was sad because the whole
class got donuts and I didn'tget a phone call early enough to
(35:05):
provide her with something safethat she could have?
Sure, but did we talk about it?
Did we then, you know, havesomething special for her?
Yes, so I think it's just amatter of having a good
communication channel withwhoever is taking care of your
child.
Speaker 1 (35:24):
Yeah, I have a conversation with my
five-year-old now about you knowcause.
She'll say like, well, that'snot fair, mommy, about whatever,
whatever the case may be, I say, well, you know, life is not
fair and sometimes that works inyour favor and sometimes it
doesn't.
But life is not fair and how werespond to it is is our
(35:45):
responsibility and we can'tblame others for how we're
responding.
Now, that's not to say it's notincredibly frustrating when,
especially a school, it justfeels like you have to fight
tooth and nail to get what youknow is right for your child.
It is very frustrating and, asyou alluded to, we're about to
(36:07):
come to our number one.
But having those plans in placewhere you are saying to others
this is how you prevent areaction in my child, these are
foods that are safe, these arefoods that are not safe.
Whether it's EOE, f-pies,anaphylactam, whatever, the type
of adverse reaction to a foodis that it is powerful to
(36:28):
provide others with a plan forwhat to do.
And, honestly, as a mom, likewhen I'm watching other kids,
like I want to know, like I wantto know that you know, and I've
been really, I've been reallyum, um happy like on the group
and stuff with the class, momsand like all of this.
(36:50):
Most moms are very supportive.
Yes, there's always going to bea bad apple where it's like
well, my kid really likes peanutbutter.
Why can't we have peanut butter, you know like?
But for the most part, most Ihave found that most families
are supportive because we all,we all just want our kids to be
included, right, we don't, we, Iknow, I like, I can.
(37:13):
Just, it just breaks my heartwhenever my daughter or my son
can't be like, can't be includedor wouldn't be included for
something you know like.
That would just make me so sadand I would never want another
family to feel that way and Ithink most people are like that.
Speaker 2 (37:28):
Yeah, and I think to add to that, when you come with
the information to them, towhoever it may be, at a birthday
party or whatnot, and theyrealize how serious that oh,
look at all this information,this is serious Then they take
it seriously and then theybecome more helpful.
You know, you kind of brush itoff as, oh, it's okay, you know
she'll figure it out, or youknow whatever, just as long as
(37:58):
she doesn't eat it.
or you know, I think, when youcome armed because there are
those people you know, we I'vehad many conversations with
school nurses that will say youknow, I have a form here and it
says they have XYZ allergy, butthey don't have an epi and it's
because they were never taught,or I mean, there's obviously or
like oh, my kiddos only hadhives with with need an epi pen.
Speaker 1 (38:21):
Like that is not true , that is inaccurate, so they
need to be in with a boardcertified.
Speaker 2 (38:26):
Yeah, and so you know .
But when you sort of with anyit's not just food allergies,
but with any situation, when yousort of are a little
lackadaisical about it, I don'tknow if I said that right, but
then other people will be aswell.
You know, if you come armedit's not to scare them, because
I can tell you, or like oh, I'mscared, I'm not.
I'm not telling you this toscare you, I'm telling you this?
(38:48):
because this is a fact and thesethings could happen and I need
you to know, if they do happen,how to take care of them.
And that's it, that's what.
Speaker 1 (38:57):
I'm doing.
Right, I, I try to work withfamilies, my whole team.
We try to work with families toteach families to respect the
allergen, not to fear it.
Speaker 2 (39:07):
Right.
Speaker 1 (39:08):
And so when we project that respect for it,
spirit right, and so when weproject that respect for it, I
think other people recognize it.
And to your point, you, yousaid something about oh, she
just can't be around it, likewhen, when somebody's saying
like, oh well, she can be aroundit or can't be around it,
whatever the case may be and youtalked about earlier about
transitioning to the adult caremodel just because you know that
(39:33):
she can't, like she could bearound peanut butter, and you
know that and she knows thatright.
But like, if you're at a party,do you really want to be around
something that when you smellit it really makes you feel
really queasy, like you know,like no, and so so when, when
our kiddos are younger and theycan't make the, the conscious
(39:55):
decision of like, okay, well,I'm allergic, I can't eat this,
we have to put very, um, verystrict safety rails, guard rails
, in place to keep that childsafe.
Because that child if, if, ifthey're sitting next to a little
kiddo, a two-year-old, they'resitting next to another little
two-year-old who's just likechowing down on reese's peanut
butter cups, and that littlekiddo has a peanut allergy, you
(40:16):
know, then of course, the littlekiddo is just going to want to
try to eat it or they might, youknow, play, feed each other,
blah, blah, blah, like we haveto put safety rails in place.
But as they get older, it'simportant that we teach kiddos
what is safe, what is not safe,so that then they can make those
decisions.
But then also, I had aconversation recently about just
(40:41):
because of food, just becauseshe can be around a food,
doesn't mean she wants to bearound it, right.
It doesn't mean, like, she hasto sit in a assigned seat in the
cafeteria when people on eitherside of her are eating her
allergen, just because she's infifth grade, seventh grade,
whatever the case may be, andyou're right, it being around
her is not going to causeanaphylaxis, it's not going to
kill her, right, but thatdoesn't mean she should have to
(41:04):
be around it, right.
These are the nuances that comewith discussions with your
allergist, with having a plan inplace and that, particularly
FYI, would go into anindividualized health care plan.
We won't get into like 504s andindividualized health care
plans and all that stuff, butthere's lots of plans that you
(41:25):
want to talk with your allergistabout and all the planning is
important.
Yeah, about and so, and all theplanning is important, but that
brings us to our number oneMental health.
Mental health, um, you as a mom, have just heard a diagnosis, a
(41:54):
new diagnosis for your child.
I have heard it said many timesthat, um, this was not the life
you expected for your child,and it's important to just take
time and recognize that andallow yourself to feel the
emotions that come with that.
Speaker 2 (42:10):
Yeah, it's a.
It's not a fun.
I mean anything that changessort of the trajectory of how
you envision your life, right,it's not fun.
But being told that your kidcould die from a food, it's
(42:31):
pretty mind-boggling and ittakes a minute.
You kind of have to mourn sortof the ease that was the day
before, right the day before youwere, you know, buying M&Ms and
not thinking twice aboutpopping them in your mouth.
Or my husband used to havepeanut butter jelly time while
we were watching shows and ourdaughter was in between us just
(42:54):
kind of munching on her littlesnacks and and the next day you
give her peanut butter jellytime and your role changes and
that's so scary and no one everwants to go through life
thinking that your child can getharmed.
And so when it becomes areality, over food that's
(43:14):
supposed to nourish them, it'sthere really are no words.
I mean there.
It's so hard to describe thatand, at least for me.
I went through a mourning period.
I handle my emotionsdifferently Depending on
situations.
I had to wrap my brain aroundit and the way that I did that
(43:35):
was bombarding myself withinformation, which is good and
bad, but overall you just haveto realize that it's okay.
It is okay and I know this nowand I can talk about my child's
first reaction and not shedtears, and I can think about her
(43:55):
future and not spiral.
But it took a bit to get thereright, like it took some time to
arm ourselves with the tools,arm her with the tools,
especially now you know almost16, to know that it's going to
be okay.
Life just looks a littledifferent and we have to make
(44:17):
more concessions.
When we go out of town, we haveto make sure that there's safe
places for her and places whereshe feels comfortable.
Um, arming our families withall of the information.
Luckily, again, we were veryblessed that our families were
on board.
Not every family is like that,and so there are so many nuances
of things that you have tomentally prepare yourself for
(44:38):
and listen.
Sometimes we can handle that onour own and sometimes we can't,
and we need to seek out otherresources to help us handle
those, whether it's yourallergist or mental health
professional or just, you know,self-help books, whatever it may
be be, it's okay.
It is okay.
It is okay to be sad that yourchild has something that you
have zero control of.
(44:58):
It is okay to be angry.
I was angry for the longesttime, um, because, again, it's
not the life that you envisioned.
But I will tell you, 13 yearsout, um, our life was amazing.
Her life is amazing, um.
Has she been through really hardtimes in this journey?
(45:19):
Absolutely.
Will she continue to maybe bepresented with challenges?
Sure, but we feel that we havedone our best to never make her
feel less than and to never makeher feel scared.
And those times where she didfeel scared, um, we figured out
how to make it okay and tovalidate those things and to
(45:42):
provide her with the tools toget her to the other side, um,
and that's all you can really do.
That's all you really do,because if you try to box those
feelings up, they just get worseand then you spiral.
And I mean, my child is leavingfor college in two years and the
idea that she's going to have alot of firsts without us and
(46:05):
she will be responsible for herown food and her own medication,
and late nights, you know, likeall of those things, um is
scary and I've been thinkingabout them for years.
And so now, being so close toit, having all of the the tools
and the information and the newtherapies and medicines that we
(46:29):
can do.
We're transitioning to this.
Okay, college is supposed to befun and educational and not
scary.
How are we going to make thathappen?
But it took work, y'all.
It took work to get there andthat's okay, like it is so.
Okay, I could talk about thisforever.
You know that.
Speaker 1 (46:50):
So talk about it so beautifully, pam, and you said
something that I really want tocamp on for just a minute as we
wrap up the show is.
You talked about feelings beingvalid.
Yeah, and I have so many moms.
When they bring their kiddos tosee me, they'll say something
along the lines of maybe I'moverreacting.
(47:10):
They'll say something along thelines of maybe I'm overreacting
and 99.99,.
Actually, I can't think of atime where a parent was, in my
opinion, overreacting.
I think they were respondingappropriately or how they were
feeling or the plans they weretrying to put in place.
They we sometimes think like ohwell, I'm overdoing it here.
Like it is our job, at the endof the day, to take care of
(47:32):
these children, like Godentrusted our children to us.
I firmly believe that and it ismy job as a mom to keep that
child safe and help that childgrow and ultimately serve God
and contribute to the community.
And and when you get adiagnosis thrown at you, you're
like wait a second, I'm I'malready like trying to be the
(47:54):
best mom possible, and now thislike what?
And trying to keep your childsafe.
You know that it's hard enough.
It's hard enough, but then youadd a diagnosis to it, oh my God
(48:24):
.
So taking a moment to feel likeokay, my feelings are valid.
Speaker 2 (48:28):
We're going to get through this.
But, yes, this is a time theyfeel like they're overreacting.
I can firmly look back on thelast 13 years and you know see
places where maybe my safetynets were a little higher
because I was, you know, in thetrenches and learning and it was
(48:48):
on you.
Speaker 1 (48:50):
I don't forget any of it.
Speaker 2 (48:51):
And if you thought I was overreacting, that's a you
problem, not a me problem.
I was keeping my kids safe andI had, I would not change a
thing.
I would not change a thing.
And so moms and dads,grandparents, aunts, uncles,
whoever is a caretaker of akiddo with a food allergy for
the first time it does notmatter what other people think
(49:15):
your reaction is or how theyfeel your reaction should be.
It's your reaction.
You deal with it the way youcan and you put safety walls
anywhere you can and be okaywith that.
It is okay.
Speaker 1 (49:28):
Preach, sister Preach .
And now our listeners, thesenew mamas.
Hi, new mom.
Now have plans, outline of whatyou need.
Speaker 2 (49:42):
Yeah.
Speaker 1 (49:42):
Very helpful.
Speaker 2 (49:45):
I think it's just what every, just a simple thing
is to try to make sure that, um,just the simple things.
To try to make sure thatsomething that is scary I don't
want to say it could be scary,it is scary, isn't?
Speaker 1 (50:00):
dictating how you live your life.
Right, you were putting theplans in place.
Sometimes plans need to change,but you have the power to put
the plans in place.
Oh, I love it, pam.
Thanks so much, of course, forcoming on the show.
I know you haven't been on in awhile, so I'm so happy that you
were able to join today.
I thought this was the perfectepisode for you to come on, so,
(50:21):
thank you.
Thanks so much for tuning in.
Remember I'm an allergist, butI'm not your allergist, so talk
with your allergist about whatyou learned today.
Like subscribe, share this withyour friends and go to
foodallergyandyourkiddocom whereyou can join our newsletter.
God bless you and God blessyour family.
Hello and welcome to the Food Allergy and your Kiddo
Show.
I am your host, Dr Alice Hoyt,along with my amazing co-host,
Ms Pam Lestage.
Hello, Pam.
Speaker 2 (00:15):
Hello Dr Hoyt, how are you?
Speaker 1 (00:20):
How are you?
It's kind of funny because youdon't usually call me Alice
anyway.
Speaker 2 (00:23):
I don't, and it's been a minute since I've been on
the podcast so I, like I forgotto switch off Welcome back.
Speaker 1 (00:34):
Yes, and you don't call me Alice, you don't call me
Dr Hoyt, but you call me by myhigh school nickname, which is
AJ.
So, anyway, though, enoughabout our tangent number one.
But today I'm really excitedabout our show today and I'm
really excited that you'rejoining me for it, because the
time we're recording this, it'scoming up towards Mother's Day.
(00:57):
It's also coming up towardsFood Allergy Awareness Week, so
I really wanted to do an episodewhere we could talk about our
top five plans for moms who arenew to the food allergy world.
So moms who have kiddos whowere recently diagnosed, little
(01:18):
babies, older kids, whatever thecase may be.
But really, if you're a mamaand you are new to this world of
food allergy, this episode isabsolutely for you.
And also moms and dads, right,but we're going to be
specifically talking to momstoday.
We're both moms, but even ifyou've been in the food allergy
space for a while, these plans,it's going to be important just
(01:41):
to make sure that you have themin place.
What do you think, pam?
Yeah, I think it's always good,important just to make sure
that you have them in place.
What do you think, pam?
Speaker 2 (01:45):
Yeah, I think it's always good, especially the
longer you get into your foodallergy journey, to reevaluate
your plans and just make surethat everyone's on board,
because I think that the longeryou're on it, the easier it is
to sort of kind of step back Notstep back, but just it's not in
(02:07):
the forefront of your mind allthe time, as it is whenever
you're a brand new food allergyparent and it's always important
to just sort of refresh those.
But as a new parent, a newcaregiver, a new sibling, it's
always important to just have aplan in place, because I think
that when we have a plan inplace then all of the stressors
are easier to compile into onelittle box and we can handle
(02:31):
them.
And we'll touch base on thatlater, but it's just important.
Speaker 1 (02:36):
I totally agree with you and I think you know, the
longer I am a mom, the more Iappreciate having plans for
things.
Plans can change right, we haveto be flexible, but just having
a plan, having a strategy forhow we're going to approach
something, is just makes it moredoable.
Speaker 2 (02:55):
Makes it more doable and I think when you're dealing
with little kiddos, kids needstructure and kids need plan and
everybody's family looksdifferent and the way that we
structure our family may not bethe way that you structure your
family, which is totally okay,but there needs to be a little
bit of cohesiveness among thegroup for everything to just
(03:16):
sort of work and be a happierjourney than a scary journey.
Speaker 1 (03:24):
Less stress, more joy .
Speaker 2 (03:25):
Yes.
Speaker 1 (03:28):
That is the slogan of my practice right Less stress
and more joy.
I love it.
Okay, so we're going to gothrough this list and it's our
top five, but before we came onrecording, we were already
talking about how we'll gothrough these in an order.
They're not really in an orderof priority, because they're all
(03:50):
important and that's what wewere kind of like going back and
forth.
Well, this one here, this one,they're all important.
Speaker 2 (03:56):
Yeah, they're all important and, again, every
family is different, and so howyou structure these five tips
will look different, but some ofthem too can kind of and you'll
see as we start talking can allbe kind of done at once or
around the same time, and so itreally is just.
These are the first five thingsthat we recommend you tamp down
(04:18):
before you really start thatfood allergy journey or well,
you're starting it already, butbefore it kind of starts moving
along.
Speaker 1 (04:27):
Right, no, totally.
And if you get these plans inplace, then I feel like you will
be more in the driver's seatthan allowing the food allergy
to kind of dictate things,because you'll have less
surprises, because you will haveplanned for these things.
Yeah, so we're going to goorder like five, five, four,
(04:48):
three.
Two, one, one, two, three, four, five.
Speaker 2 (04:49):
I don't know, we're just going to say they're five
of them.
Speaker 1 (04:51):
They're five of them.
The first one is to have a planfor what to do if your child
has another reaction.
Speaker 2 (05:00):
Yeah, which is that's like the first thing.
This, this one.
We will say it's the firstthing you should do.
On you know how the allergicreaction goes right.
Like some people have anallergic reaction and they see,
they realize that.
For instance, here's our firstallergic reaction.
I gave my child peanut butter.
I noticed she started gettinghives.
(05:20):
Um, this was 12 years ago.
I noticed she started gettinghives.
This was 12 years ago, 13 yearsago.
Back then it was give Benadryla watch, right?
That's not what we did, we epi,right, that's not what we did,
but that's what we did back then.
And so I recognized that it wassome sort of weird reaction.
(05:42):
I gave her some Benadryl.
My dad happens to be aphysician.
I took her to his office.
She sat down, we watched herfor a little while.
We went on our way.
We were recommended to go to anallergist.
That is not necessarily how italways happens.
Sometimes your first reactionwill send you straight to the ER
, and so whether you're dealingwith your first reaction at home
(06:03):
, you're dealing with it atschool, you're dealing with it
at the ER.
The first thing you need to do,once you get that clearance
that your kid is okay, is whatdo I do next time?
Speaker 1 (06:17):
A million percent.
If your kiddo goes to the ERwith a situation like what Pam
described, that's ananaphylactic or IgE-mediated
food allergy and that should betreated with epinephrine.
Of course, if you're having areaction for the first time, you
might not have epinephrineright.
Most people don't haveepinephrine hanging around right
(06:38):
, and so you want to seekmedical advice promptly.
So you want to seek medicaladvice promptly and before you
leave that emergency room andthis is something we're doing I
have my allergist hat on, whichI guess I'm always wearing my
allergist hat here on thepodcast, but, like I guess my
allergy like medical educatorhat is more of what I should
(06:59):
specifically say to mycolleagues who are not
allergists.
There we go.
That's what I'm intending to sayis we need to do more
continuing education fornon-allergists to provide proper
guidance after an anaphylacticreaction, because sometimes we
find that even though it's 2025,right now, sometimes ERs still
(07:21):
are not prescribing anepinephrine autoinjector after
what clearly is in the paperworkis diagnosed as an allergic
reaction, and so that's somework we need to do.
But it's important as a momthat you have a clear plan for
what to do in case your childwere to have another reaction
and also how to prevent anotherreaction.
(07:43):
And so, like in Pam's case,like she, she could pretty
clearly see that or tell me ifI'm wrong.
But it seemed like you couldpretty clearly see like you had
just given her peanut as kind ofa new food, I think and she
started having a reaction to thefood you had given her.
So you knew, okay, well, I'mnot going to give her peanuts.
Speaker 2 (08:12):
Oh yeah, until an allergist tells me it's okay.
Yeah, and it was.
You know, I think, as a new momand I mean I was a new mom a
long time ago, so I don't knowwhat it's like to be a new mom
now.
But you know, back then oh gosh, I'm about to age myself but we
didn't really use Google or,you know, the internet to figure
those things out.
We bought books and, um, I'mnot that old guys, but like you
know, like it's just, it's kindof what it was.
(08:33):
And so we had all the books likewhat to do, and the book said
you know, these are the signsthat you look for in case of a
reaction.
You give one foot, you know allof all of those things.
And a lot of thoserecommendations have changed.
And when I had my daughter itwas still you wait till a
certain age and you get andwatch, and that's kind of what I
did and I think, you know,mommy, intuition kind of comes
(08:54):
into.
I'm a firm believer that yourgut is constantly telling you
stuff and it was a gut feeling.
I was very and very blessed thatI have medical people around me
, and so I did not go to theallergist right away, because it
wasn't necessarily recommendedto me at that point.
(09:14):
We were told to go, you know, ayear later.
But now, obviously, knowingwhat I know, that's what would
have been my first call.
It would have been an allergist, but I knew that she couldn't
have it anymore.
I need to have an EpiPen.
I knew what to watch for, andso I was lucky in that way.
And so if you leave the ER andyou're not getting that feedback
(09:37):
, or if you leave yourpediatrician and maybe they
haven't met a doctor employeethat's been able to sort of
provide that continuingeducation, then it's your job,
as you know, as the parent, totry to find that, to keep your
child as safe as possible, and Ithink we do that as parents
anyway.
I think that we try to find allthe ways to be able to make our
(09:57):
child as safe as possible.
So it's just sort of in adifferent way, a different
structure.
Speaker 1 (10:02):
Now I'm totally with you on that and you know we're
seeing more FPI's food proteininduced enterocolitis syndrome,
which is um profuse vomiting oneto four ish hours after
ingesting the food.
And it's much more common in inbabies than in older kiddos and
it can happen not necessarilythe first time they eat the food
(10:24):
, sometimes even the first time.
Um same with anaphylactic foodallergies.
Sometimes it's the first time,sometimes it's not the first
time.
There's no magical number alsofor when a food is safe.
Basically if a kid's had a fooda few times and has tolerated
it, then we think it's usuallypretty safe.
Rarely do we see anaphylacticfood allergies present like that
(10:47):
where someone's had peanutbutter multiple times and then
all of a sudden, especially inkids, where they can't eat it.
But that's also why we sayearly incorporation of allergens
, not just early introductionbut early incorporation,
especially in high-risk kiddos.
Kiddos who have already have afood allergy or have severe
eczema should start trying theseallergens peanut as early as
(11:09):
three to four months, inage-appropriate forms of course,
but then keep it in the diet toteach the immune system to
tolerate it.
Early introduction is like awhole nother podcast episode.
But this also brings me back toour list, which the next thing
on our list is to see anallergist.
(11:29):
And so I'm so interested, pam,because you said something I
think our listeners are probablywondering like you weren't
advised to see an allergistuntil the next year, and I've
definitely had patients presentto me who have said, oh well,
such and such doctor was an ERdoctor or pediatrician, said,
like usually an ER doctor not somuch pediatricians but said, oh
well, you don't even need to goto the allergist until they're
(11:52):
two because they won't do anytesting until they're two anyway
, which is inaccurate.
But I will also say thatallergists and more than lab
orderers 95, 99% of me making adiagnosis and a correct
diagnosis is the history, isputting down and talking with
(12:15):
the family, and that is the bestway for me to determine what is
safe for your child and what isnot safe for your child, so
that, ultimately, when a familyis leaving my office, they know
what is safe, what is safe foryour child and what is not safe
for your child, so that,ultimately, when a family is
leaving my office, they knowwhat is safe, what is not safe,
or we make a plan by which we'regoing to tease that out.
But I wonder, pam, from yourexperience back then about not
(12:36):
seeing the allergist until thenext year, kind of like, would
you mind elaborating a littlebit more on how that happened
and what you would do if that,if, if that were the case today?
Speaker 2 (12:46):
Um, yeah, sure.
So we went to the pediatricianright away.
It happened close to her twoyear birthday, so we were
already going to thepediatrician and you mentioned
it to her and she said oh well,and, mind you, we don't see this
pediatrician anymore, but notbecause of this, but we have a
(13:08):
wonderful pediatrician.
Just in case she happens tolisten to this, it's not you.
Speaker 1 (13:14):
You're such a nice person, Pam.
Speaker 2 (13:20):
We love our pediatrician.
Now the time basically said ohwell, it sounds like she had an
allergic reaction.
Here's a prescription for anEpiPen.
Go fill it.
Don't give her any peanuts.
Come back for her nextappointment and at that point we
will do a food challenge.
And I said okay.
(13:40):
Again, the pediatrician saidthis yeah, wow.
Speaker 1 (13:45):
And I'm sure I'm saying wow, because usually
pediatricians don't do foodchallenges number one but number
two.
You know, back in the day, backat that time of diagnosis, that
management plan was perfectlyrespectable.
(14:05):
Today you have your treatmentsfor food allergies, so that
would not be the best, but it'snot super far off.
Yeah, interesting, she wasplanning, or he was planning, to
do a food challenge, though.
Speaker 2 (14:27):
Yes, but we'll get to that in a sec.
So basically, she just saidhere's your epi don't give her
peanuts.
She didn't give any guidance.
She didn't say what to watchout for.
Don't give her peanuts.
She didn't give any guidance.
She didn't say what to watchout for.
She didn't um, you know, saythis is how you avoid it.
So all of the education that Igot was me figuring it out.
You know, it was me researchingme, um, talking to you who I
think you were starting yourresidence being your fellowship.
Speaker 1 (14:51):
It was very.
I wasn't an allergist.
Speaker 2 (14:54):
So this was just me talking to my best friend, who
happened to be in my schoolsituation.
My dad, obviously, is a doctor,so that's how I got my
information.
So the next year when she'sturning three, I call the office
We've had a great year and Isaid, hey, we're ready to
schedule that food challenge andshe said, oh well, we can't do
(15:15):
that here, that's dangerous.
Here's the allergistinformation.
Speaker 1 (15:21):
What every mom wants to hear, right.
Speaker 2 (15:22):
And so I think at that point it really hit me that
this was more than just, oh, weshould avoid the food, because
I was not really educated by heras to like, like, we didn't
have an emergency action plan,none of that, anyway.
And so at that point, when thathappened, my final red flag
went up and I was like this isnot the care my child needs.
(15:48):
And so, luckily, I was able toget a recommendation for a
wonderful allergist and we wentto see him, and that's when we
did all the testing the skin,the blood, the education that we
needed.
And at that appointment, I meanI still remember driving home
like in tears with her in theback, because it made it real,
you know, I think seeing hermakes it real and I think the
(16:11):
sooner it made it real, you know, I think seeing your health
makes it real and I think thesooner, the sooner it can become
real and you know what you'retrying to tackle, the better.
And so, looking back when ithappens, whether it's the ER or
your pediatrician or your family, you know, physician, even if
they don't recommend seeing anallergist, go see an allergist.
(16:33):
Go see an allergist because youwill leave that appointment
overwhelmed.
But you, you should be armedwith the tools on how to keep
your child safe, um, what toavoid.
You know all of the things, allof the things that you talk
about, that we've talked abouton this podcast.
Again, I think my experience isunique because I am surrounded
(16:57):
by so many medical people that Iwas able to not necessarily
need that valid not thevalidation but need the extra
from the allergist in terms ofwhat I was getting into.
But having a clear diagnosisfrom him was really what put my
(17:21):
food allergy hat on, made mesort of the silent advocate and
sometimes the loud advocate thatI became for my kid and I think
that's a fantastic advocate,and you're so research-minded
anyway that you were, and you'regood at finding good sources
too.
Speaker 1 (17:41):
So I mean you've done a fantastic job.
Speaker 2 (17:45):
It is to say that until I saw the allergist, my
sources were things likeFacebook groups, because that
was sort of the only socialmedia that we had at the time.
And you know, mommy, blogs andsometimes and we've talked about
this so many times on the blogsocial media can be a great tool
.
It also be a really scary tool,because sometimes your own
(18:07):
fears are reflected in whatyou're trying to share and then
it can kind of turn into thisfear-mongering situation and so
again get your information infront of a food allergist
instead of the internet, whichwas, you know, which is kind of
what I did.
Speaker 1 (18:24):
Yeah, and your allergist can also tell you some
good, good resources, livedexperiences You're absolutely
right From Facebook groups andhearing other people's
experiences, what you're sharing, lived experiences are so
important.
They can absolutely help us asmoms.
Right, and just kind of hearingit of what's been your
(18:44):
experience you know that'salways just like can be very
helpful.
But when it starts going intolike the sensationalization and
fear mongering, that's when weneed to reel it back in.
And if you're listening to thisand you've heard some like scary
stuff about food allergy andyou're wondering, oh my gosh, is
that going to happen with mykid or whatever, the first thing
you need to do is either calland schedule a followup with
(19:06):
your allergist or send them amessage or or something.
That's where you want to getyour personalized,
evidence-based information from,specifically about your child.
So seeing an allergist is socritical and a lot of people
don't really know to see anallergist.
And see an allergist.
As soon as you're given apreliminary diagnosis whether
(19:28):
it's the ER or a pediatrician orjust you're seeing your child
have some sort of reaction youwant your child to be evaluated
by a healthcare professional, adoctor, immediately.
But you also your next step,once your child is safe is to
get in with an allergist.
Speaker 2 (19:44):
And continue seeing them.
Speaker 1 (19:47):
Yeah, especially now, especially now there are so
many treatment plans available,different strategies, different
whether it's oral immunotherapy,sublingual immunotherapy,
omelizumab their avoidance isstill, absolutely still, a good
treatment option.
But being able to have thosediscussions with an allergist
who literally has done so muchtraining to be able to take care
(20:10):
of your child, that's who youwant to get this information
from.
Which brings us to the nextnumber three on the list is have
a plan for testing.
So, whether it's skin pricktesting, blood testing,
ingestion challenge, just likePam, you thought you had a plan
(20:30):
and then you're like, wait, I'mnot the plan.
Okay.
I find that when I work withfamilies and we sort of map out
what's going to happen next, wegive them the plan, I give them
the anticipatory guidance.
Then we are all working towardsthat common goal together and
there's no like oh, what's goingto happen next?
(20:52):
I don't know.
There's no.
I mean, I hate that feelingwhen I have a doctor situation
and I'm like, oh well, what arewe going to do next?
Like I I try very hard to makethat never happen, but sometimes
, like you're just in theseappointments and you know, maybe
you don't have your list.
Always write down your list ofquestions.
Oh my gosh, you know, and makesure, like you have that paper
(21:14):
list out paper not just likepulled up on your phone, but
like paper, because it's just soeasy to turn the paper around
and show it to the doctor sothat they know what your
questions are and then they canmake sure you get them answered.
But with the testing skin pricktesting, blood testing,
ingestion challenge you get themanswered.
But with the testing skin pricktesting, blood testing,
ingestion challenge whatever thecase may be, having a plan like
(21:37):
, let's say, your child isallergic to peanut and y'all are
not in the season of life to dooral immunotherapy or
subliminal immunotherapy, andyou're like you know what?
I just want to maybe wait.
Can we just wait a few monthsor six months or a year and see
what's going on?
Then your plan would be toretest in a year.
We don't want to retest ifwe're not going to do anything
with that information.
Really, like you don't want tojust test, to test.
(21:58):
You want to have a plan like,okay, you're doing the test and
then, if it's this number or ifit's this result, you're going
to do this.
If it's this result, you'regoing to do this.
How do you feel about testingPam and having a plan for
testing?
How do?
Speaker 2 (22:11):
you feel about testing Pam and having a plan
for testing?
I think as a mom, you know,early on I wanted but again,
this was a long time ago.
I wanted to see the numbersbecause I like to see things
happening and I like to have theinformation.
(22:32):
But then I quickly realizedthat A it's traumatic for your
kid to constantly be testing andwe weren't constantly testing
her, but you know it was goingto the allergist and just being
told she's still allergic.
And then kind of walking outwith a new epi prescription at
the time.
Just I don't know, I just Iwanted something.
I wanted something Fromobjective data.
Speaker 1 (22:54):
We like objective data and so, yes, if you have a
child with an anaphylactic orIgE-mediated food allergy,
there's lab tests, there's skinprick testing.
If you have a child with FPIES,there's not any testing, it's
all clinical history and you'relike, okay, well, they just had
a reaction.
So we're going to wait, atleast a year likely to
re-challenge.
Or maybe, if it's egg or milk,then we'll try some baked
(23:16):
products to try to do some sortof modified ladder for FPI's.
Again, this is stuff you'rediscussing with your allergist.
I'm an allergist but I'm notyour allergist.
So talk to your allergist aboutwhat we're discussing.
One, one more, one more, becauseour EOE moms who are listening
eosinophilic esophagitis, that'sone we're having.
The management plan, thetesting plan, can be kind of
(23:39):
like wait when are we going tore-scope?
Because with EOE, the only wayto get that diagnosis,
unfortunately right now is to doan endoscopy and have tiny
biopsies in multiple locationsof the esophagus.
Eoe is basically eczema of theesophagus and the way we
diagnose it is with an endoscopywhere a GI doctor goes down in
(24:00):
the esophagus, your kiddo isasleep under an
anesthesiologist's care and doestiny, tiny little biopsies and
we're looking for these types ofallergy cells called
eosinophils in the esophagus.
Eosinophils should never be inthe esophagus and so we're
looking for a certain number ofthem and then, if they're there,
then we're considering thisdiagnosis of EOE.
(24:21):
And then we do some things.
Do we do this medication or dothis diet plan?
And then when do we re-scope?
And that is always the questionwhen do we repeat the endoscopy
?
Because, as painful and I'm amom of a five-year-old and a
two-year-old and labs are atotal bummer, right no one likes
(24:47):
getting their kiddos' labs done, or a lot of kiddos don't like
skin part testing, right butlike having to do a sedated
procedure.
I mean that, you know, likehaving a plan for these tests
helps, helps us as moms walk theroad.
I would say I'm sorry Iinterrupted you.
Speaker 2 (25:01):
Maybe you interrupted me or maybe we were just we
just interrupted each other, butI will say, just bringing it
back to how I feel about testingand having a plan, is, the more
I learned and the more this,the world of allergy changed,
the more I realized that thenumbers, the numbers, are
(25:23):
telling me something right, butlike they're not giving me the
whole picture.
And and because we were veryhappy with avoidance, um, um,
oit was fairly new not fairlynew, but it wasn't being done
the way it's being done now.
Um, it just wasn't in the cardsfor us and we, so we were happy
(25:43):
to just go to our allergist andand have that conversation with
him and and he would say youknow, we're just not going to
retest this year, we're, youknow we'll, we'll see what the
landscape looks like next year,and so, okay.
So that's what we did.
And he reminded us of all ofour things, gave us new
emergency action plans, any newdata.
You know he would relay thatinformation to us, and so I do
(26:05):
think that, again, it'simportant to go yearly to your
allergist.
At one point we were going everynine months.
I don't know why.
That's just the way it washappening.
I don't necessarily think thatwas them, I think it was just my
scheduling.
And so now, the older she gets,you know, when discussions
started happening about do wewant to proceed with any of
(26:27):
these new therapies, we testedagain and we saw, and we saw
that numbers kind of still lookthe same.
And so to me at the beginning itwas more about how much
information I can get.
But again, remember, the answerthen was still not what it is
now.
I think new allergy moms nowjust just need to have a plan in
(26:51):
place, and that doesn'tnecessarily mean doing new labs
all the time or doing newtesting all the time, but when
appropriate.
And even that to me, not as anew allergy mom just in the last
five years the landscape haschanged so much that every time
I went into the allergist I wasexcited to see how he felt about
(27:12):
the new things.
And then, you know, listen tothe podcast or do my own
research and kind of see whatyou had to say or what others
had to say, and then take all ofthat information and make a
plan based on that.
And it's been pretty empowering, I would say, to just sort of
get all of that from him, fromyou, from you know the world of
(27:34):
evidence-based allergyinformation and it just almost
kind of gives a peace of mindand I could talk about this, as
you know.
You know we're transitioning tothe adult care model and so
that's a whole new set of thingsthat we could talk about that
forever, but it's just importantBottom line.
(27:54):
I spoke so much, but it's justimportant to have that plan in
place, just also for how youfeel about all of the things.
Speaker 1 (28:03):
Yeah, a million percent.
And you mentioned transitioningto the adult care model, which
is basically when you know she'sgrowing up and she's going to
be scheduling her appointmentsand she's going to be refilling
her medications, and so it'simportant to start thinking
about that well before it'sactually time to do it.
(28:25):
And hats off to you guys.
You guys do a beautiful,beautiful job, guys.
You guys do a beautiful,beautiful job.
And so all of this kind ofbrings us to our next, which is
how to prepare other people totake care of your child, and so
one thing that y'all are goingto start thinking about is when
(28:46):
she goes to college and makingsure that she has access to safe
foods right, a lot of kidsthese days are required to
purchase a meal plan and makingsure there's safe options there
and having a plan in place forhow to communicate that to the
school.
I've definitely written lettersand such for those types of
situations.
But things like camp, thingslike just going to school,
(29:09):
having that emergency actionplan as we've talked about a few
times now, whether it's ananaphylaxis action plan for a
kiddo with food allergy or anemergency action plan for FPIES
or an accidental ingestion planfor kiddos with EOE Like what do
you do if somebody else istaking care of your kiddos which
happens all the time, right?
(29:29):
I mean taking care of yourkiddos, which happens all the
time, right?
I mean whether it's early childcare or school or baseball or
camp or whatever the case may beanyone who's responsible for
your kiddo you want them to havea very clear plan on how to
prevent, recognize and respondto an allergy emergency.
What say you, pam?
Speaker 2 (29:52):
I learned very quickly that I needed to have
all of my information in oneplace, and so it made it very
easy.
Every time I dropped off atcamp or at school or with a
family member is I had a letterfrom my allergist kind of
stating.
You know the situation because,especially early on, you know
they may not want the epi on thechild, they may want an adult
(30:13):
to have it.
I always wanted it on my childbecause it's on my child.
You know exactly where it is,and so I just had a letter where
he would you know explain thesituation and explain that he
was comfortable with that.
I had pictures.
Speaker 1 (30:27):
Epinephrinerine.
Your child's emergencymedication should always be
immediately accessible to yourchild.
Should not be locked.
Should be in a secure locationif not actually on their person.
Speaker 2 (30:41):
Should be immediately accessible always, and in
louisiana there are laws forthat.
Yes, in both states.
Speaker 1 (30:50):
There are laws Now do all schools recognize realize?
It never ceases to surprise methese days, despite the laws on
the books, sometimes someschools non-school entities are
still just not where they needto be regarding being up to date
.
And sometimes it comes tohaving to have discussions with
(31:12):
that entity's attorneys to getthe language changed and for
them to then realize, oh, it'sactually a liability if I don't
change our current outdatedpolicy.
And then, once they realizethat it's much smoother and
they're actually usually prettygrateful to the family for
bringing it to their attention.
Speaker 2 (31:32):
Anyway, there's a tangent no, I think it's
important because I think that'spart of sort of like my toolkit
is that I was always armed withwhat I knew our rights were.
And so when it came to school,so before we got to school, I
always had pictures, because Ihad pictures of what she looked
(31:53):
like, with a reaction as scaryas that is, and so I would say,
look, these are some.
It's not always going to lookthis way, but if you see this on
her face, you know that couldbe a sign.
And so I had pictures, I hadthe letter, I had the emergency
action plan, I had herlife-saving medication, I had
(32:14):
the emergency action plan, I hadher life-saving medication, um,
and I was armed with the lawsand with my rights.
Um, because I did a few times um, run into school situations
where, um, they weren't up todate and I was up to date and
there were discussions there tomake sure that they knew that.
I knew my pig could have her,you know, her epinephrine on her
person and it didn't need to belocked away.
(32:35):
And because I knew my rightsand her rights, um, it was
always an easy conversation.
I mean, obviously there wassome back and forth, but I think
that's also.
Another great tip is that youdon't always need to be on the
defensive, because sometimes,when we're on the defensive.
(32:56):
Our emotions can get the best ofus.
And you can't really haveproductive conversations with
people that you want to takecare of your child.
I'm not saying, don't beemotional.
It's an emotional topic andwe'll touch on it in a second.
An emotional topic and we'lltouch on it in a second.
But if you're armed with theinformation, if you're armed
(33:19):
with her medication, if you'rearmed with a good plan, then
you're giving that and you're,you're taking hold of that power
and you're armed and you knowwhat to do, and it can just be a
simple conversation hey, listen, if you need to do your
research, that's fine, but thisis how you take care of my child
.
Speaker 1 (33:30):
Right.
Speaker 2 (33:30):
And this is, you know how to keep her safe, because a
safe kid is better than a kidthat you have to call an
ambulance for.
Speaker 1 (33:37):
Absolutely.
And at that point, when youhave all of that lined up, you
have objective information thatyou are passing along.
This isn't just you saying, ohhey, can we talk about this?
And not having anything fromyour doctor, not having anything
, you not coming to the table,understanding the your rights,
your child's rights.
So absolutely, oh my God, andyou're you're a master at that
(34:01):
of you know the squeaky wheelgets the grease right.
So we don't ever want to likefade into the background and
just assume a school is doingeverything correctly, even if
you know other great allergyfamilies that go to the school.
And you assume a school isdoing everything correctly, even
if you know other great allergyfamilies that go to the school
and you're like, well, they gothere and I'm, I guess this plan
is okay because they go there,Right, never assume any of that.
It's different.
Speaker 2 (34:21):
For everybody and like when it comes to like camps
and schools.
We always provided safe snacksfor her because it made her feel
comfortable.
We never made it and I thinkthis is important, parents we
never made it as if she wasdifferent.
So she got to sit with herfriends and have a snack and she
usually had like a buddy thatate next to her that we knew
(34:44):
weren't wasn't going to eatsomething she didn't have, but
we never wanted to isolate her,because it's not her fault that
she has an allergy.
She was going this way, and itcan sometimes seem as a
punishment whenever that childis excluded.
Now, did she have times whereshe was sad because the whole
class got donuts and I didn'tget a phone call early enough to
(35:05):
provide her with something safethat she could have?
Sure, but did we talk about it?
Did we then, you know, havesomething special for her?
Yes, so I think it's just amatter of having a good
communication channel withwhoever is taking care of your
child.
Speaker 1 (35:24):
Yeah, I have a conversation with my
five-year-old now about you knowcause.
She'll say like, well, that'snot fair, mommy, about whatever,
whatever the case may be, I say, well, you know, life is not
fair and sometimes that works inyour favor and sometimes it
doesn't.
But life is not fair and how werespond to it is is our
(35:45):
responsibility and we can'tblame others for how we're
responding.
Now, that's not to say it's notincredibly frustrating when,
especially a school, it justfeels like you have to fight
tooth and nail to get what youknow is right for your child.
It is very frustrating and, asyou alluded to, we're about to
(36:07):
come to our number one.
But having those plans in placewhere you are saying to others
this is how you prevent areaction in my child, these are
foods that are safe, these arefoods that are not safe.
Whether it's EOE, f-pies,anaphylactam, whatever, the type
of adverse reaction to a foodis that it is powerful to
(36:28):
provide others with a plan forwhat to do.
And, honestly, as a mom, likewhen I'm watching other kids,
like I want to know, like I wantto know that you know, and I've
been really, I've been reallyum, um happy like on the group
and stuff with the class, momsand like all of this.
(36:50):
Most moms are very supportive.
Yes, there's always going to bea bad apple where it's like
well, my kid really likes peanutbutter.
Why can't we have peanut butter, you know like?
But for the most part, most Ihave found that most families
are supportive because we all,we all just want our kids to be
included, right, we don't, we, Iknow, I like, I can.
(37:13):
Just, it just breaks my heartwhenever my daughter or my son
can't be like, can't be includedor wouldn't be included for
something you know like.
That would just make me so sadand I would never want another
family to feel that way and Ithink most people are like that.
Speaker 2 (37:28):
Yeah, and I think to add to that, when you come with
the information to them, towhoever it may be, at a birthday
party or whatnot, and theyrealize how serious that oh,
look at all this information,this is serious Then they take
it seriously and then theybecome more helpful.
You know, you kind of brush itoff as, oh, it's okay, you know
she'll figure it out, or youknow whatever, just as long as
(37:58):
she doesn't eat it.
or you know, I think, when youcome armed because there are
those people you know, we I'vehad many conversations with
school nurses that will say youknow, I have a form here and it
says they have XYZ allergy, butthey don't have an epi and it's
because they were never taught,or I mean, there's obviously or
like oh, my kiddos only hadhives with with need an epi pen.
Speaker 1 (38:21):
Like that is not true , that is inaccurate, so they
need to be in with a boardcertified.
Speaker 2 (38:26):
Yeah, and so you know .
But when you sort of with anyit's not just food allergies,
but with any situation, when yousort of are a little
lackadaisical about it, I don'tknow if I said that right, but
then other people will be aswell.
You know, if you come armedit's not to scare them, because
I can tell you, or like oh, I'mscared, I'm not.
I'm not telling you this toscare you, I'm telling you this?
(38:48):
because this is a fact and thesethings could happen and I need
you to know, if they do happen,how to take care of them.
And that's it, that's what.
Speaker 1 (38:57):
I'm doing.
Right, I, I try to work withfamilies, my whole team.
We try to work with families toteach families to respect the
allergen, not to fear it.
Speaker 2 (39:07):
Right.
Speaker 1 (39:08):
And so when we project that respect for it,
spirit right, and so when weproject that respect for it, I
think other people recognize it.
And to your point, you, yousaid something about oh, she
just can't be around it, likewhen, when somebody's saying
like, oh well, she can be aroundit or can't be around it,
whatever the case may be and youtalked about earlier about
transitioning to the adult caremodel just because you know that
(39:33):
she can't, like she could bearound peanut butter, and you
know that and she knows thatright.
But like, if you're at a party,do you really want to be around
something that when you smellit it really makes you feel
really queasy, like you know,like no, and so so when, when
our kiddos are younger and theycan't make the, the conscious
(39:55):
decision of like, okay, well,I'm allergic, I can't eat this,
we have to put very, um, verystrict safety rails, guard rails
, in place to keep that childsafe.
Because that child if, if, ifthey're sitting next to a little
kiddo, a two-year-old, they'resitting next to another little
two-year-old who's just likechowing down on reese's peanut
butter cups, and that littlekiddo has a peanut allergy, you
(40:16):
know, then of course, the littlekiddo is just going to want to
try to eat it or they might, youknow, play, feed each other,
blah, blah, blah, like we haveto put safety rails in place.
But as they get older, it'simportant that we teach kiddos
what is safe, what is not safe,so that then they can make those
decisions.
But then also, I had aconversation recently about just
(40:41):
because of food, just becauseshe can be around a food,
doesn't mean she wants to bearound it, right.
It doesn't mean, like, she hasto sit in a assigned seat in the
cafeteria when people on eitherside of her are eating her
allergen, just because she's infifth grade, seventh grade,
whatever the case may be, andyou're right, it being around
her is not going to causeanaphylaxis, it's not going to
kill her, right, but thatdoesn't mean she should have to
(41:04):
be around it, right.
These are the nuances that comewith discussions with your
allergist, with having a plan inplace and that, particularly
FYI, would go into anindividualized health care plan.
We won't get into like 504s andindividualized health care
plans and all that stuff, butthere's lots of plans that you
(41:25):
want to talk with your allergistabout and all the planning is
important.
Yeah, about and so, and all theplanning is important, but that
brings us to our number oneMental health.
Mental health, um, you as a mom, have just heard a diagnosis, a
(41:54):
new diagnosis for your child.
I have heard it said many timesthat, um, this was not the life
you expected for your child,and it's important to just take
time and recognize that andallow yourself to feel the
emotions that come with that.
Speaker 2 (42:10):
Yeah, it's a.
It's not a fun.
I mean anything that changessort of the trajectory of how
you envision your life, right,it's not fun.
But being told that your kidcould die from a food, it's
(42:31):
pretty mind-boggling and ittakes a minute.
You kind of have to mourn sortof the ease that was the day
before, right the day before youwere, you know, buying M&Ms and
not thinking twice aboutpopping them in your mouth.
Or my husband used to havepeanut butter jelly time while
we were watching shows and ourdaughter was in between us just
(42:54):
kind of munching on her littlesnacks and and the next day you
give her peanut butter jellytime and your role changes and
that's so scary and no one everwants to go through life
thinking that your child can getharmed.
And so when it becomes areality, over food that's
(43:14):
supposed to nourish them, it'sthere really are no words.
I mean there.
It's so hard to describe thatand, at least for me.
I went through a mourning period.
I handle my emotionsdifferently Depending on
situations.
I had to wrap my brain aroundit and the way that I did that
(43:35):
was bombarding myself withinformation, which is good and
bad, but overall you just haveto realize that it's okay.
It is okay and I know this nowand I can talk about my child's
first reaction and not shedtears, and I can think about her
(43:55):
future and not spiral.
But it took a bit to get thereright, like it took some time to
arm ourselves with the tools,arm her with the tools,
especially now you know almost16, to know that it's going to
be okay.
Life just looks a littledifferent and we have to make
(44:17):
more concessions.
When we go out of town, we haveto make sure that there's safe
places for her and places whereshe feels comfortable.
Um, arming our families withall of the information.
Luckily, again, we were veryblessed that our families were
on board.
Not every family is like that,and so there are so many nuances
of things that you have tomentally prepare yourself for
(44:38):
and listen.
Sometimes we can handle that onour own and sometimes we can't,
and we need to seek out otherresources to help us handle
those, whether it's yourallergist or mental health
professional or just, you know,self-help books, whatever it may
be be, it's okay.
It is okay.
It is okay to be sad that yourchild has something that you
have zero control of.
(44:58):
It is okay to be angry.
I was angry for the longesttime, um, because, again, it's
not the life that you envisioned.
But I will tell you, 13 yearsout, um, our life was amazing.
Her life is amazing, um.
Has she been through really hardtimes in this journey?
(45:19):
Absolutely.
Will she continue to maybe bepresented with challenges?
Sure, but we feel that we havedone our best to never make her
feel less than and to never makeher feel scared.
And those times where she didfeel scared, um, we figured out
how to make it okay and tovalidate those things and to
(45:42):
provide her with the tools toget her to the other side, um,
and that's all you can really do.
That's all you really do,because if you try to box those
feelings up, they just get worseand then you spiral.
And I mean, my child is leavingfor college in two years and the
idea that she's going to have alot of firsts without us and
(46:05):
she will be responsible for herown food and her own medication,
and late nights, you know, likeall of those things, um is
scary and I've been thinkingabout them for years.
And so now, being so close toit, having all of the the tools
and the information and the newtherapies and medicines that we
(46:29):
can do.
We're transitioning to this.
Okay, college is supposed to befun and educational and not
scary.
How are we going to make thathappen?
But it took work, y'all.
It took work to get there andthat's okay, like it is so.
Okay, I could talk about thisforever.
You know that.
Speaker 1 (46:50):
So talk about it so beautifully, pam, and you said
something that I really want tocamp on for just a minute as we
wrap up the show is.
You talked about feelings beingvalid.
Yeah, and I have so many moms.
When they bring their kiddos tosee me, they'll say something
along the lines of maybe I'moverreacting.
(47:10):
They'll say something along thelines of maybe I'm overreacting
and 99.99,.
Actually, I can't think of atime where a parent was, in my
opinion, overreacting.
I think they were respondingappropriately or how they were
feeling or the plans they weretrying to put in place.
They we sometimes think like ohwell, I'm overdoing it here.
Like it is our job, at the endof the day, to take care of
(47:32):
these children, like Godentrusted our children to us.
I firmly believe that and it ismy job as a mom to keep that
child safe and help that childgrow and ultimately serve God
and contribute to the community.
And and when you get adiagnosis thrown at you, you're
like wait a second, I'm I'malready like trying to be the
(47:54):
best mom possible, and now thislike what?
And trying to keep your childsafe.
You know that it's hard enough.
It's hard enough, but then youadd a diagnosis to it, oh my God
(48:24):
.
So taking a moment to feel likeokay, my feelings are valid.
Speaker 2 (48:28):
We're going to get through this.
But, yes, this is a time theyfeel like they're overreacting.
I can firmly look back on thelast 13 years and you know see
places where maybe my safetynets were a little higher
because I was, you know, in thetrenches and learning and it was
(48:48):
on you.
Speaker 1 (48:50):
I don't forget any of it.
Speaker 2 (48:51):
And if you thought I was overreacting, that's a you
problem, not a me problem.
I was keeping my kids safe andI had, I would not change a
thing.
I would not change a thing.
And so moms and dads,grandparents, aunts, uncles,
whoever is a caretaker of akiddo with a food allergy for
the first time it does notmatter what other people think
(49:15):
your reaction is or how theyfeel your reaction should be.
It's your reaction.
You deal with it the way youcan and you put safety walls
anywhere you can and be okaywith that.
It is okay.
Speaker 1 (49:28):
Preach, sister Preach .
And now our listeners, thesenew mamas.
Hi, new mom.
Now have plans, outline of whatyou need.
Speaker 2 (49:42):
Yeah.
Speaker 1 (49:42):
Very helpful.
Speaker 2 (49:45):
I think it's just what every, just a simple thing
is to try to make sure that, um,just the simple things.
To try to make sure thatsomething that is scary I don't
want to say it could be scary,it is scary, isn't?
Speaker 1 (50:00):
dictating how you live your life.
Right, you were putting theplans in place.
Sometimes plans need to change,but you have the power to put
the plans in place.
Oh, I love it, pam.
Thanks so much, of course, forcoming on the show.
I know you haven't been on in awhile, so I'm so happy that you
were able to join today.
I thought this was the perfectepisode for you to come on, so,
(50:21):
thank you.
Thanks so much for tuning in.
Remember I'm an allergist, butI'm not your allergist, so talk
with your allergist about whatyou learned today.
Like subscribe, share this withyour friends and go to
foodallergyandyourkiddocom whereyou can join our newsletter.
God bless you and God blessyour family.
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