Thank
you so much for doing this amazing spotlight. My husband Adam and I were
fortunate after years of trying to be blessed with two sweet little babies,
Reagan (4.5 years), and Wyatt (2.5 years). We live in Utah, and I have
been blessed to be a stay at home mom, while Adam works full time as a computer
engineer and going to school full time. Our son Wyatt was diagnosed with
a very rare disease called FPIES (Food Protein Induced Entercolitis Syndrome)
and a differential diagnosis of EoE (Eosinophilic Esophagitis). He also suffers
from severe GERD, and Asthma. Our life is crazy, and hectic, but it is
beautiful, and we love it. Our children have each taught us such amazing
and beautiful lessons, and helped us grow into better people. Thank you for
taking the time to tell Wyatt’s story.
you so much for doing this amazing spotlight. My husband Adam and I were
fortunate after years of trying to be blessed with two sweet little babies,
Reagan (4.5 years), and Wyatt (2.5 years). We live in Utah, and I have
been blessed to be a stay at home mom, while Adam works full time as a computer
engineer and going to school full time. Our son Wyatt was diagnosed with
a very rare disease called FPIES (Food Protein Induced Entercolitis Syndrome)
and a differential diagnosis of EoE (Eosinophilic Esophagitis). He also suffers
from severe GERD, and Asthma. Our life is crazy, and hectic, but it is
beautiful, and we love it. Our children have each taught us such amazing
and beautiful lessons, and helped us grow into better people. Thank you for
taking the time to tell Wyatt’s story.
***************
Miggy:
Jessie, thank you so much for participating in today’s spotlight.
I’m am eager to learn more about Wyatt’s condition and to help educate my
readers about this rare condition as well. First please tell us about
FPIES–what it is and how it affects your son. Does it affect different
people in different ways? Can you tell us about treatment and long term
prognosis?
Jessie, thank you so much for participating in today’s spotlight.
I’m am eager to learn more about Wyatt’s condition and to help educate my
readers about this rare condition as well. First please tell us about
FPIES–what it is and how it affects your son. Does it affect different
people in different ways? Can you tell us about treatment and long term
prognosis?
Jessie: FPIES stands for Food Protein Induced
Entercolitis Syndrome, which in short is an allergy that effects the
Gastrointestinal Tract, and the immune system. It causes extreme vomiting and
diarrhea until the body goes into shock, extreme lethargy, dehydration, pale
skin, and sunken eyes. There are two types of FPIES, classic (acute), and
Chronic, and some kids experience both, like my son Wyatt. FPIES is a delayed
reaction from 1 hour on, and even a small crumb can send kids into life
threatening shock and sepsis. Some children are only effect by a few foods, and
some like Wyatt are affected by hundreds.
Entercolitis Syndrome, which in short is an allergy that effects the
Gastrointestinal Tract, and the immune system. It causes extreme vomiting and
diarrhea until the body goes into shock, extreme lethargy, dehydration, pale
skin, and sunken eyes. There are two types of FPIES, classic (acute), and
Chronic, and some kids experience both, like my son Wyatt. FPIES is a delayed
reaction from 1 hour on, and even a small crumb can send kids into life
threatening shock and sepsis. Some children are only effect by a few foods, and
some like Wyatt are affected by hundreds.
The
treatment and diagnosis of FPIES are tricky, because there is no
“test” for FPIES, traditional allergy tests do not show FPIES
allergies, so doctors have to go off of patient history, and watching
reactions. Most cases of classic FPIES resolve by 4 years old, but the
more serious cases, and most Chronic cases take much longer to resolve if they
do. The most standard treatment is elimination diets, special Amino Acid
Based formula, carefully trialing food, and in some cases feeding tubes, or TPN
(Total Parenteral Nutrition).
treatment and diagnosis of FPIES are tricky, because there is no
“test” for FPIES, traditional allergy tests do not show FPIES
allergies, so doctors have to go off of patient history, and watching
reactions. Most cases of classic FPIES resolve by 4 years old, but the
more serious cases, and most Chronic cases take much longer to resolve if they
do. The most standard treatment is elimination diets, special Amino Acid
Based formula, carefully trialing food, and in some cases feeding tubes, or TPN
(Total Parenteral Nutrition).
Wyatt’s
prognosis at this point is not great. He will likely struggle with food for his
entire life. He is on the rare side of this rare disease in that he does not
have any safe foods right now, and reacts violently to literally
everything. He will likely not fully outgrow FPIES and is considered by
his doctors FPIES plus, because there is something else there making him sick,
that we haven’t discovered yet. Our doctors believe it is EoE
(Eosinophilic Esophagitis) plus FPIES, but we are waiting on firm confirmation.
prognosis at this point is not great. He will likely struggle with food for his
entire life. He is on the rare side of this rare disease in that he does not
have any safe foods right now, and reacts violently to literally
everything. He will likely not fully outgrow FPIES and is considered by
his doctors FPIES plus, because there is something else there making him sick,
that we haven’t discovered yet. Our doctors believe it is EoE
(Eosinophilic Esophagitis) plus FPIES, but we are waiting on firm confirmation.
FPIES
is a life threatening and dangerous allergy, but it is often misunderstood, and
very rare, so it is not known by most doctors.
is a life threatening and dangerous allergy, but it is often misunderstood, and
very rare, so it is not known by most doctors.
Miggy:
When did you first learn that Wyatt had this condition? Do you
remember how you felt? Can you compare those first thoughts and feelings
with how you feel now?
When did you first learn that Wyatt had this condition? Do you
remember how you felt? Can you compare those first thoughts and feelings
with how you feel now?
Jessie: Wyatt struggled from his very first day of
life, and his relationship with food. He would vomit (projectile) every single
thing that went into his mouth, and screamed constantly his first 2 years of
life. We saw doctor after doctor, and it wasn’t until he was 23 months, and I
took some info I found online from The FPIES Foundation (fpiesfoundation.org)
after a google search of his symptoms to our family doctor, that we were able
to have him diagnosed. She sent us to a new Allergist and our Regular GI doctor
with the Info, and he was diagnosed 2 weeks before his second birthday. At this
point, he had spent his entire life considered FTT (Failure To Thrive).
It was such a bittersweet moment the day we received his official diagnosis. I
remember when I did that google search (which I had done at least a million
times before), and reading the definition of FPIES, tears streaming down my
face, and thinking, “This is Wyatt, this is my boy!” I knew
without a doubt that this is what was plaguing him. I read more, and
searched more, and then I started to get scared. I saw these really sick kids,
some sicker than my own boy, and I as badly as we needed a diagnosis for him, I
didn’t want it to be something so rare, with no cure. I got involved in
the Facebook groups for FPIES, and met some incredible moms that get me through
our hardest moments with this. The day our Doctor called after his second
scope to rule out a few different things and said to me “Jessie, I am
positive Wyatt has FPIES” I lost it. Finally, we had a name for what
was happening to our boy. He had a name for what was plaguing him, and we
could explain it to people, and doctors would know what to do for him.
Now, I do not live in fear. I have anxiety from it, and I worry so much, but I
know what is wrong with him, and we finally have good doctors who can help us.
life, and his relationship with food. He would vomit (projectile) every single
thing that went into his mouth, and screamed constantly his first 2 years of
life. We saw doctor after doctor, and it wasn’t until he was 23 months, and I
took some info I found online from The FPIES Foundation (fpiesfoundation.org)
after a google search of his symptoms to our family doctor, that we were able
to have him diagnosed. She sent us to a new Allergist and our Regular GI doctor
with the Info, and he was diagnosed 2 weeks before his second birthday. At this
point, he had spent his entire life considered FTT (Failure To Thrive).
It was such a bittersweet moment the day we received his official diagnosis. I
remember when I did that google search (which I had done at least a million
times before), and reading the definition of FPIES, tears streaming down my
face, and thinking, “This is Wyatt, this is my boy!” I knew
without a doubt that this is what was plaguing him. I read more, and
searched more, and then I started to get scared. I saw these really sick kids,
some sicker than my own boy, and I as badly as we needed a diagnosis for him, I
didn’t want it to be something so rare, with no cure. I got involved in
the Facebook groups for FPIES, and met some incredible moms that get me through
our hardest moments with this. The day our Doctor called after his second
scope to rule out a few different things and said to me “Jessie, I am
positive Wyatt has FPIES” I lost it. Finally, we had a name for what
was happening to our boy. He had a name for what was plaguing him, and we
could explain it to people, and doctors would know what to do for him.
Now, I do not live in fear. I have anxiety from it, and I worry so much, but I
know what is wrong with him, and we finally have good doctors who can help us.
Miggy:
Explain how Wyatt’s needs affect your day-to-day life.
Explain how Wyatt’s needs affect your day-to-day life.
Jessie: Wyatt is our first thought. In every single
thing that we do, he comes first. We don’t eat together as a family any more,
we eat in shifts, so that he does not feel like he is being punished by having
to be alone in a room while we all eat. I don’t cook very elaborate meals
anymore, because the time, and attention belong to Wyatt more than our food. We
never go out to eat, and we don’t do many celebrations with family. It’s
amazing how much in our world involves food. We have learned that environmental
factors make him react majorly, and we have cut out wipes, soap, lotion,
chapstick, and make him a special laundry soap. He has to use special water,
and we take his formula with us no matter where we go.
thing that we do, he comes first. We don’t eat together as a family any more,
we eat in shifts, so that he does not feel like he is being punished by having
to be alone in a room while we all eat. I don’t cook very elaborate meals
anymore, because the time, and attention belong to Wyatt more than our food. We
never go out to eat, and we don’t do many celebrations with family. It’s
amazing how much in our world involves food. We have learned that environmental
factors make him react majorly, and we have cut out wipes, soap, lotion,
chapstick, and make him a special laundry soap. He has to use special water,
and we take his formula with us no matter where we go.
During the winter
months, we do not leave our house, and skip church, and most family activities,
so that we can keep Wyatt healthy. He does not sleep for more than a few
hours at a time, so we have had to adjust our life around his schedule. He sees
a team of 6 specialist, and has 3 therapists that he sees weekly. Our lives
revolve around his doctor and therapy schedule. We don’t have play dates,
and he will never go to the Nursery or Primary in our church, preschool, and
will most likely be home schooled. Our daughter Reagan who is Wyatt’s older
sister has to skip dance, church, preschool, and kindergarten next year, so
that any germs she would get there won’t make him extremely ill with his already
compromised immune system. Wyatt is very rarely without his mom, and Reagan
spends a lot of quality time with her grandparents when Wyatt is ill. We
have had to really rely on our extended families for support.
months, we do not leave our house, and skip church, and most family activities,
so that we can keep Wyatt healthy. He does not sleep for more than a few
hours at a time, so we have had to adjust our life around his schedule. He sees
a team of 6 specialist, and has 3 therapists that he sees weekly. Our lives
revolve around his doctor and therapy schedule. We don’t have play dates,
and he will never go to the Nursery or Primary in our church, preschool, and
will most likely be home schooled. Our daughter Reagan who is Wyatt’s older
sister has to skip dance, church, preschool, and kindergarten next year, so
that any germs she would get there won’t make him extremely ill with his already
compromised immune system. Wyatt is very rarely without his mom, and Reagan
spends a lot of quality time with her grandparents when Wyatt is ill. We
have had to really rely on our extended families for support.
Miggy:
Like you said, you’ve had to change your life and even your expectations
of what your life would look like dramatically. I admire your strength
and commitment to do so. I love that you don’t have family meals anymore
so as not to make Wyatt feel excluded. At the same time it must be really
hard not to do so many ‘normal’ family activities. What coping strategies
do you have to help offset these challenging circumstances? What do you
do to recharge your batteries? Any advice to other mama’s in a similar
circumstance?
Like you said, you’ve had to change your life and even your expectations
of what your life would look like dramatically. I admire your strength
and commitment to do so. I love that you don’t have family meals anymore
so as not to make Wyatt feel excluded. At the same time it must be really
hard not to do so many ‘normal’ family activities. What coping strategies
do you have to help offset these challenging circumstances? What do you
do to recharge your batteries? Any advice to other mama’s in a similar
circumstance?
Jessie: Meal time was a hard thing to change, because
we have always eaten together. It’s easier to break up meal time when we
are at home, and much harder to do when our extended families gather
together. At Thanksgiving this year, I played legos upstairs with Wyatt
while my husband and daughter ate with his family, and then my husband Adam
switched me after he made sure our daughter was fed. We have started to adjust
our approach to gatherings that revolve around food, we go late, or leave
early, or make sure that Wyatt and one parent spend time doing something fun in
a separate room.
we have always eaten together. It’s easier to break up meal time when we
are at home, and much harder to do when our extended families gather
together. At Thanksgiving this year, I played legos upstairs with Wyatt
while my husband and daughter ate with his family, and then my husband Adam
switched me after he made sure our daughter was fed. We have started to adjust
our approach to gatherings that revolve around food, we go late, or leave
early, or make sure that Wyatt and one parent spend time doing something fun in
a separate room.
Our
families are very understanding and we try and plan things with them not
involving large groups or food. And we have gone back to a simpler way, doing
more just us, and playing games, watching movies, or going for drives and
walks.
families are very understanding and we try and plan things with them not
involving large groups or food. And we have gone back to a simpler way, doing
more just us, and playing games, watching movies, or going for drives and
walks.
In a
time where all of our friends have their children in dance, and preschool,
playgroups, and going on weekly dates, we have had to adapt and get creative.
Usually one of us gets take out while the other puts the kids down, and prays
that Wyatt stays in bed for an entire episode of The Big Bang Theory while we
eat a taco together, and if he doesn’t he joins us, and we make do.
time where all of our friends have their children in dance, and preschool,
playgroups, and going on weekly dates, we have had to adapt and get creative.
Usually one of us gets take out while the other puts the kids down, and prays
that Wyatt stays in bed for an entire episode of The Big Bang Theory while we
eat a taco together, and if he doesn’t he joins us, and we make do.
I have
mandatory naptime on Sunday afternoon. It’s pretty much the only time
that I have just to me, and to recharge. Unfortunately, it doesn’t always
happen, but I make a conscious effort that it does. It’s how I get
through the week. I also try and lay down and sleep while Wyatt does, because
it is rare, and we both need it. So most of our life is planned around his
sleep. I will cancel pretty much any activity if he falls asleep.
mandatory naptime on Sunday afternoon. It’s pretty much the only time
that I have just to me, and to recharge. Unfortunately, it doesn’t always
happen, but I make a conscious effort that it does. It’s how I get
through the week. I also try and lay down and sleep while Wyatt does, because
it is rare, and we both need it. So most of our life is planned around his
sleep. I will cancel pretty much any activity if he falls asleep.
I
would suggest to other moms to find people that are understanding and
supportive. That don’t judge them or don’t try and understand, and let go of
the rest. Explain to those closest to you that you need them to be
understanding, and try and work with you so you can still have a relationship
with them, and to get involved in support groups of your child’s struggle,
because you won’t find more understanding and loving friends, and they will
often be the ones online at 3 am when you are in a panic and can help you
through. Some of my best friends and greatest allies I will probably
never meet in person, but I would really be struggling without their support.
would suggest to other moms to find people that are understanding and
supportive. That don’t judge them or don’t try and understand, and let go of
the rest. Explain to those closest to you that you need them to be
understanding, and try and work with you so you can still have a relationship
with them, and to get involved in support groups of your child’s struggle,
because you won’t find more understanding and loving friends, and they will
often be the ones online at 3 am when you are in a panic and can help you
through. Some of my best friends and greatest allies I will probably
never meet in person, but I would really be struggling without their support.
Miggy:
What are the biggest worries you face for Wyatt?
What are the biggest worries you face for Wyatt?
Jessie: My biggest worry for him is that he won’t
ever get better. It’s such a scary thing, to not know if your child will
thrive. I worry daily about him reacting, because it wracks his body, and takes
him months to recover from the smallest reaction.
ever get better. It’s such a scary thing, to not know if your child will
thrive. I worry daily about him reacting, because it wracks his body, and takes
him months to recover from the smallest reaction.
Miggy:
Now for a lighter question, I’m a big believer in seeing the humor in
life and learning to laugh, so have you ever had any funny
conversations/moments you never imagined due to your special needs situations?
Now for a lighter question, I’m a big believer in seeing the humor in
life and learning to laugh, so have you ever had any funny
conversations/moments you never imagined due to your special needs situations?
Jessie: I never imagined that I would turn into the
poop detective. Never in my life did I imagine my phone would be filled
with pictures of poop, and most of the conversations I would have with my
husband, mom, and my friends would revolve around poo. I’ve had more than
one person look at me like a nut job when I am inspecting a diaper before
tossing it in a public restroom, or worse when I save it, when there is clearly
a garbage close by to toss it in.
poop detective. Never in my life did I imagine my phone would be filled
with pictures of poop, and most of the conversations I would have with my
husband, mom, and my friends would revolve around poo. I’ve had more than
one person look at me like a nut job when I am inspecting a diaper before
tossing it in a public restroom, or worse when I save it, when there is clearly
a garbage close by to toss it in.
Miggy:
How can people best approach or respond to Wyatt? Is there something you
wish other people knew so as to avoid awkward or hurtful situations?
How can people best approach or respond to Wyatt? Is there something you
wish other people knew so as to avoid awkward or hurtful situations?
Jessie: I wish that people wouldn’t always say
“He looks fine to me” To me that is one of the most hurtful
things, because it completely invalidates his struggle, how strong he is, and
how much he has been through. He is a strong, happy boy, but his life is
very hard, and he is in constant pain. I wish that people would
understand that this is not the same as being allergic to grass, or choosing to
be gluten free. This is something that effects our entire family, and is life
threatening to him. And I wish that people would first think about how
they would like people to respond to them in a similar situation before
speaking. Is it kind? Is it necessary? Is it helpful?
“He looks fine to me” To me that is one of the most hurtful
things, because it completely invalidates his struggle, how strong he is, and
how much he has been through. He is a strong, happy boy, but his life is
very hard, and he is in constant pain. I wish that people would
understand that this is not the same as being allergic to grass, or choosing to
be gluten free. This is something that effects our entire family, and is life
threatening to him. And I wish that people would first think about how
they would like people to respond to them in a similar situation before
speaking. Is it kind? Is it necessary? Is it helpful?
Miggy:
What is the biggest lesson you’ve learned since becoming Wyatt’s
mom?
What is the biggest lesson you’ve learned since becoming Wyatt’s
mom?
Jessie: The biggest lesson I have learned is to just
let it go. I worried so much what people thought or said before I had him, and
I put up with people who were unkind and judgmental because I didn’t want to
hurt their feelings. I do not have time for that now, and I don’t have
time to be upset at stupid people. I learned to better let go of the things
that are not meant for me, and the people who were not supportive or
helpful. I’ve had to let go of expectations I had set for myself, for my
kids, and what I thought our life would be. And I have had to learn to really
live in the moment, and celebrate every single day.
let it go. I worried so much what people thought or said before I had him, and
I put up with people who were unkind and judgmental because I didn’t want to
hurt their feelings. I do not have time for that now, and I don’t have
time to be upset at stupid people. I learned to better let go of the things
that are not meant for me, and the people who were not supportive or
helpful. I’ve had to let go of expectations I had set for myself, for my
kids, and what I thought our life would be. And I have had to learn to really
live in the moment, and celebrate every single day.
For
more information on FPIES, please go to: fpiesfoundation.org
more information on FPIES, please go to: fpiesfoundation.org
You can learn more
about Wyatt, and his FPIES on his blog at hopeforwyatt.wordpress.com
about Wyatt, and his FPIES on his blog at hopeforwyatt.wordpress.com
***************
Thank you so much Jessie! Wow… I remember listening to a podcast once about parental love featuring some children with severe mental and emotional issues. At the beginning of the show the host basically said it was time to “listen to some stories that will make your job as a parent seem easy.” Jessie, your situation with your sweet Wyatt makes most of our jobs as parents seem easy. I know that you’re doing what most parents in your shoes would have to do, but your fierce dedication to Wyatts physical needs as well as his emotional well being is inspirational. And I love what you said about letting go, living in the moment and celebrating every single day. Thanks again and much love to you and your sweet family.
As always if you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.
Have a fantastic weekend!
Thank you so much for these spotlights Miggy…It not only increases awareness but also gives so much inspiration after reading about the moms and kids who are so strong …
Thank you so much for sharing our story Miggy! You are doing such wonderful things, and truly helping us mom stay sane, and have inspiration and moms to look up too when it gets hard!
Beautiful child. Thanks for sharing with all of us. You are an inspiration.
Beautiful boy, and an amazing story. It's hard for me to wrap my mind about how much you've changed your life to take care of your sweet boy- it's inspiring.
Our family hibernates during flu season, and it creates such a close-knit, cozy environment for our family. It was hard at first, but now I love it. I don't know if this tip will be helpful, as it has to do with food, and I hope I don't offend you by sharing this- but since we don't eat out during flu season, on the days where I just can't think of something to cook, my husband will pick up food that can be reheated in the oven. We broil pizza or any Italian food really for 5 minutes to kill all the germs.
Thanks again for sharing your story.
So beautiful. We love Wyatt!
Thank you for sharing this special little guy. My son (age 2) was diagnosed with FPIES almost a year ago. It is thankfully not as severe (only dairy and soy), but it is still scary. Between my daughter having Fructose Malabsorption and my son having FPIES, I am a food fiend, and my kids rarely can eat the same thing at a meal. It is amazing how food-centric our society is. Which isn't bad, unless your kids have food problems. And a lot of people just don't understand, which sometimes makes it harder. We really struggled getting my husband's family on board. I hope and pray things will get easier for Wyatt as he gets older, and how blessed is he that he has such wonderful parents who will move the moon for him.
And I TOTALLY understand the poop-obsession.