(soft music)
- Kyla has a disorder called eosinophilic esophagitis.
We call it EoE for short in our household.
- Much easier.
- We probably, noticed with Kyla,
that there was something off with her
when we introduced solid foods for the first time.
She went from a pretty happy baby to really fussy,
didn't sleep, wasn't gaining weight well.
And we talked a lot to pediatricians
about it who dismissed it kind of as
first-time mom, you're worrying too much,
she's fine, just let her adjust.
She started to fall off of her growth curve
into her toddler years.
It wasn't until she was in kindergarten
where we finally decided to give her
an endoscopy for the first time.
The visual of her esophagus was terrible,
it looked like a cat had scratched
up and down her esophagus.
It looked like there were rings
where it was stricturing all up and down.
And that was when we got the diagnosis
of eosinophilic esophagitis,
which we had no idea what that meant.
So we were with a GI doctor who gave us this diagnosis,
and she said, there's a component of this
which is an allergy so I need you to see an allergist.
So I went and took her to an allergist.
His opinion was EoE was not a food-based disease
and she could just take some Zyrtec and she would be fine.
And so I had two separate, completely separate,
treatment choices, I guess.
But I went to her pediatrician in tears
saying, I don't know what to do.
Doctors are telling me completely separate things.
- I think we were kind of like just help us
in some sort of way.
- It was really frustrating 'cause you think
that doctors have the answers all the time.
And she said, you know what,
maybe a second opinion would help you.
And I was like, please.
She sent us to Children's, which kind of started us
on that trajectory towards where Kyla is now.
When you finally do get a diagnosis
and a doctor tells you, well,
it's the food you've been feeding her
that is making her sick, you just feel horrible.
You feel like a terrible parent to know that
what you were doing all along that you thought
was helping your child was really hurting them.
- Yeah, there was a lot of guilt,
I would say, on our end.
- If the child's gone undiagnosed
we first address the parent's feelings of guilt and anger.
You can imagine if you have a developing child
and you can't feed them, how devastating that can be
for a mother, when feeding a child
is a key component to parenting.
- There are all these different factors
that I think it's really not something
that somebody did wrong, I think the important point
is recognizing that this is something
my child has and how do we move forward
in a way here that will provide the best outcome.
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- The best by far part of being part of Children's
is the collaboration between the doctors.
We can go one visit and see an allergist,
and a GI doctor, and a child psychologist,
and a dietician, and a feeding therapist.
- We have a social worker, we have nurses
that are skilled in teaching people how to
take care of the disease, and we all talk together.
- We have weekly team meetings.
And we discuss our patients that we just saw.
So not only are we seeing them all together,
but also in that meeting we're discussing
what our next steps are.
- The other part of things that I think
is really important about thinking about
how we empathize with the families and with the patients
is, what are the barriers to care?
And one of those is related to endoscopic procedures.
So having an endoscopy requires
being put to sleep for anesthesia,
which can be quite traumatizing.
- It was tough to watch, no one can ever
prepare seeing their kid being put under anesthesia.
But in the back your mind you know it's for the best.
- There are a number of innovative aspects
of the program that have been really
pushed for by the research that's been done here.
- And I think one of the things that makes
our program special is the transnasal endoscopy.
And this is a six to eight minute procedure
that children can do while they're awake.
- [Luke] This nasal endoscopy is a life changer.
I mean, it's great.
In and out real quick, no anesthesia.
- [Kyla] The tube goes down your nose,
and it goes into your throat,
and then they take the biopsies that way.
You wear VR goggles and you can watch a movie in it.
It makes it go a lot faster too.
- Treatments for eosinophilic diseases,
either they're medication management or dietary management.
We wanted to find out specifically
what they would like to have done,
how they would like to have this treated,
so that she could live the best life that she could.
- The doctors have been so supportive
of our personal choice that we would
like to limit medication.
We did not want to go down the path
of controlling it by medication
if we could control it by diet.
- So as far as the dietician's role
in that process is we're part of the education team
that can really lay out the different treatment options.
We're there for taking foods out,
reintroduction of foods, and just kind of
managing their everyday life around food.
- Taryn and I try everything that we're recommending
so we wanna make sure they're good alternatives
and we're making good recommendations
that the kids'll be happy with.
- It's nice to have someone that's alongside you.
You want someone alongside you to help build you up
and to help understand what you're going through.
And that helps you move forward yourself.
So that relationship aspect is very important to us
and has helped us to get where we are right now.
(upbeat music)
- Unfortunately it is a long lasting
disorder or disease process.
- Everybody's been dealt a hand in their life.
Other people have things that might be
a little more difficult than what we have to deal with.
- You can empathize with your child to a certain extent
and then you need to help move them forward.
- It was a nice resource to have someone else say,
you know what, you're right, this isn't fair.
But this is your life and you can either
choose to sit and complain about it
or you can rise above it.
It would be foolish to say that this is
not a family diagnosis because it is.
- [Luke] Her younger brothers,
they don't understand quite what's going on.
And don't always like the menu options.
- We try to make one meal Kyla safe.
But there are times that they're having waffles
in the morning that aren't food that she can eat.
And that's okay.
So as much as it feels like at the beginning,
oh my gosh, we're never gonna live a regular life,
you do, you adapt.
- It's really refreshing to see families
I've seen for a long time.
After a few years they're like,
oh we're old hands at this.
We don't even think about it anymore.
This is just how we live.
And they really don't, it's just been
kind of woven into the fabric of their life.
- It is so satisfying to be able to develop
a relationship with a patient and family when they come in.
- And it's so fun to be able to be able to
see a patient at diagnosis maybe as an infant,
early toddlers, and get to kind of follow them
through the different stages and progression through life.
- I think it's amazing to see the children
get more confident, but then the parents
get so much more confident.
And you can see their stress and anxiety levels go down.
- And I can speak to the moms who are
newly diagnosed who are standing in the grocery store
crying because I was that mom at one point.
Where everything you pick up is a no.
It feels like it's never gonna be normal,
but it does, it just takes time.
We tell her that you have eosinophilic esophagitis,
but that's just a tiny piece of who you are.
She's just a normal kid.
And you can still do whatever everybody else is doing.
- My wish for the patients that I'm working with
is over time to really help educate
and build their confidence so that
one day they don't need us anymore.
- I think the other part of things
that brings great satisfaction is seeing
the field itself progress
and help us to provide better care.
There's a lot of hope.
And that's something that can't be underestimated.
I think that we've come so far in the last decade.
- And there is community out there,
which I think is really important
to try and find other people who really do understand
that this is hard at the beginning, it's really hard.
And day to day can still be difficult.
- Just because you have EoE,
it's not your whole life, you're still a normal kid.
And you can do it, and you will definitely get through it.
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