Tag Archives: egids

Franks’ Fight Against EOE

While I have been away for a few weeks preparing to take on a new title as “Work From Home Mom,” I also wanted to share something personal with all of you.

Previously, I mentioned that Frank was born with an autoimmune disease called Eosinophilic Esophagitis.  This week just so happens to be Eosinophilic Awareness Week so I’m going to tell you our story.

When Frank was born, he was a healthy baby boy and he was growing and gaining weight beautifully as the weeks went on.  There was just one problem.  He was vomiting ALL THE TIME.  He was eating.  He was growing?  Why is he vomiting?  Something wasn’t right so off to the pediatrician we go.

Acid Reflux.

That was the answer I received with every question I had.  “It’s just acid reflux.”  Frank was then placed on a proton pump inhibitor medication at 8 months old.  While the medicine seemed to be helping with his stomach aches, the vomiting wasn’t stopping.  Frank was exclusively breastfed until he was seven months and it didn’t dawn on me until much later that I could be the problem.allergist pics

Allergies.  I thought.  What if what I’ve been eating was making him sick all along!?

I stopped eating dairy and eggs and everything else I could possibly think of but guess what?  Frank is still sick.

By now, my husband and I had spent countless nights in the hospital with our baby boy.  Finally, we were referred to a gastroenterologist at the local childrens’ hospital.  NOW we are getting somewhere!

Let me just say, this was the beginning of a beautiful relationship and I don’t know where we would be or what Frank would be without this amazing doctor.  She immediately knew what was wrong with our son.  We treated him with medication and we kept him off certain foods until we were comfortable that he was old enough for an endoscopy.  An EGD with biopsy is the only surefire way to diagnose EOE.

Frank was 16 months old when we finally decided we needed a scope.  Not only did we officially receive an Eosinophilic Esophagitis diagnosis, we also discovered that inside that very little tummy was an ulcer about the size of a penny.  No wonder he always seemed in pain!  That ulcer was the largest doctors had ever seen inside a person that small so it was cause for more concerns.

More concerns?  Awesome… not.

Frank was then put under anesthesia for a second time in a few short weeks for an MRI.  As his parents, ofcourse Josh and I are fearing the worst.  Especially after hearing the words “tumors and cancers” tossed out.  For days I was a nervous wreck until the results came in.  Hearing “it’s just a very big ulcer, no worries, we will give him some meds” sent a wave of emotions through me and I couldn’t stop the tears.

We had an official diagnosis, we could treat it.  But how?

Here’s where the allergist comes in.

Pricks and patches and needles, oh my!  EOE and allergies go hand in hand.  If a certain food protein comes in contact with the esophagus, the white blood cells with attack it, like a virus.  Symptoms include: vomiting, coughing, wheezing, fever, rash, diarrhea, along with a list of others.  For EOE parents, it’s sometimes hard to tell if your child is having a flare or if it’s a virus!  Like Frank, some treat with a combination of meds and food elimination.  Others have so many triggers, that there is simple no other option but formula, sometimes administered through a G.I. feeding tube.  It’s also, not always food.  Frank was recently diagnosed with environmental induced EOE, where things in the environment such as pollen or dust will cause him to become very very sick.  He wears a face mask to protect him when he’s outside.

Frank is almost 5 now and handles his disease like a champ but every day is a battle.  His fight with his body is never ending. He’s soon to be going in for EGD #8… I think… maybe 9…I’ve lost count.  I couldn’t be more proud of my little Food Fighter.  We can only hope and wish for a cure.hugheoe

If you have any questions please contact me or you can visit apfed.org

 

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M-I-C.K-E-Y. Y? Should You Have To Worry About Food?

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Me & Frank @ EPCOT

Over Spring Break, my family packed our bags and headed off for our big vacation!  Usually our trips consist of the beach or the mountains.  Hey, I’m from North Carolina, those are your only options.  We finally decided to go as big as possible and head to meet “The Mouse in Chief” at Walt Disney World.

*Commence motherly freak out*  Why the major panic attack?…

When my four year old Frank was sixteen months old, he was diagnosed with a rare gastrointestinal disease called Eosinophilic Esophagitis (EOE).  It is an autoimmune disease where the white blood cells attack the esophagus when certain food proteins enter the body.  The only treatments available as of now are steroids, formulas, or food eliminations.  Some children, and adults as well, are allergic to so many foods that the only solution for them is placement of a gastrointestinal feeding tube.  For Frank, we chose a combination of food elimination and steroids.  He also has environmental induced EOE along with 10+ food allergies.

For the first time, I was taking my son to a place I had absolutely no clue about, especially in regards to where and what to eat!  I was freaking out!  How would he eat safely?  Our hotel doesn’t have a kitchen in the room.  What am I going to do?

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Disney Jr. Play n’ Dine Breakfast

I started my research and came across an online group just for food allergies at Disney World.  Amazing, right?!  It surely was.  I mean, these people really seemed to know what they were talking about.  We even received chef cards with Franks’ picture and a list of his allergens to give to each chef, right before our trip.  So helpful!

As I made my reservations, I noticed allergy notes and boxes to check, letting them know ahead of time that someone had an allergy or allergies.  When we arrived to each restaurant, it was like I had stepped out of my own “allergy mom” dream.  Real life is totally better!  There it was, every time…ALLERGY… stamped in bright red ink across our ticket.  I’m pretty sure my face looked like Goofy at this point.

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“The Look of Skepticism” He wasn’t sure they were safe for him.

I’ve never met so many chefs in Franks’ entire little life!  I was blown away at how safe they were making him.  They each came out to talk to me and they walked me through buffets.  They brought out huge plates from the kitchen.  All prepared safely and piled high with all of his favorite things.  They even brought out cupcakes!  What four year old doesn’t love cupcakes?  I have never felt so comfortable and safe about food.  Frank was normal.  For once, he was just a regular boy, eating regular food.  For once, his meals didn’t look any different from his brothers’ or his cousins’.

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Best. Cookie. EVER.

When we returned home, I asked him what was his favorite part of the trip.  I couldn’t believe the answer he gave me!  It wasn’t “meeting Mickey” or “going on safari to see the animals,” he responded with “the big chocolate cookie!”  Let me just take the time to say that I am not gluten free, soy free, nor vegan, even though I probably should be…BUT… Erin McKennas’ Bakery is amazing!  One of the best chocolate chip cookies I have ever tasted and I like to consider myself a “Cookie Connoisseur.”  Erin McKennas is a completely soy free, gluten free, vegan bakery located at Disney Springs.  Here’s another tid bit of magic for you…They ship!  If you order a birthday cake, they will get it to you overnight.  Just give them at least 48 hours notice.  They’re not fairy godmothers; although, from what I experienced there, I could be very wrong about that!

If you’re still nervous about it or on the fence about this trip, I 100% recommend Walt Disney World if you or your children have food allergies.  We had a magical time.  Now I know not everyone is the same or can eat the same so remember to always ask if you’re not sure and ALWAYS read your labels!

Disney World '16 (339)_editedLike this sign at the bakery states… “We Can Not Please Everyone. But We Try.”  They do indeed.

I have so much more to share with ya’ll.  Stay tuned… The Adventures of Frank & Murph: “At the House of Mouse” is coming soon! 🙂

-If you would like any information regarding something I’ve mentioned here, please feel free to contact me!  Comment. E-mail.  If you’re curious to know more about EOE and other eosinophilic related diseases, you can visit apfed.org.-

*Opinions and experiences are strictly my own and not affiliated with brand.*