Our story, for National Eosinophil Awareness Week – WAFEAST

This blog post is contributed by Jessica Young.  Please take a moment to become educated about eosinophilic esophagitis, or EoE, a serious illness, which is another form of the immune system over-reacting to food.  Then help raise awareness by signing up for the Hope is on the Horizon Walk on MAy 19, share the link to this post and if you can support this effort with a financial contribution to American Partnership for Eosinophilic Disorders, or APFED. Jessica and her family and all families affected by eosinophilic disease will be very grateful.

Link to APFED’s website:  http://apfed.org/drupal/drupal/index.php 

Link to APFED Fundraising Walk “Hope is on the Horizon”  in Seattle May 19 http://empowerwa.blogspot.com/search/label/Upcoming%20Events 

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My daughter, Jayden, started having symptoms immediately following a round of vaccines at 2 months old. She screamed- sometimes all night long, her face was covered in eczema,her GI system was a mess. It was colic hell. Soon, we began to realize that food allergies were playing a part in her misery, and I began removing foods from my diet (as I was breastfeeding).  Her symptoms would decrease, only to return a few days or weeks later. Sometimes a food would be fine for her, and then suddenly cause symptoms. After starting solids, the pattern continued- she would be fine with a food for a while, then suddenly react. Her reactions ranged from colic symptoms, eczema, spitting up, gas, diarrhea, mucus and blood in her stool….all the way to hives, and facial swelling. This went on and on, us pulling food after food, until she was down to a diet of less than 10 foods. In this time period, we also went through a handful of doctors, each one less helpful than the last.  In the fall of 2010, we decided that we needed answers.  Our GI told us that she looked fine and healthy, and he didn’t think we needed to do anything. We knew that wasn’t true and that we would be out of options to feed her soon, so we requested an endoscopy and colonoscopy be done. I knew that something was wrong in her GI tract, but I never imagined the diagnosis we got that day- severe EoE, or eosinophilic esophagitis.  I was shocked.She didn’t fit any of the classical symptoms of EoE in kids (vomiting, choking on food, etc.), so it wasn’t something that I had even considered.  We were told it was possibly affecting her colon as well.

After the scope, her symptoms escalated, and she stopped eating most of the foods that we thought were safe.  In early 2011, we starting supplementing her diet with medical food (“elemental”, or amino acid-based,formula).  After trying 2 different brands and seeing acute reactions, we finally found one (Neocate E028 Splash)that she seemed to tolerate.  In March,we made the painful decision to remove all foods from her diet and put her on a100% elemental diet.  A scope that summer showed that her disease was in remission. Hooray!  At that point, we got to start food trials- meaning that we tried one food at a time for weeks, watched for symptoms, and if it seemed ok, we schedule a scope with biopsies to see ifher tissue was reacting to the food.  We had one failed trial after another.  We did 2 scopes in the following year which showed that the disease had returned.

We’ve done food trials for two and a half years, and haven’t found even one safe food that Jayden’s body will tolerate, and during this time, Jayden stopped tolerating the formula and was having pain daily. After the last round of food trials, her scope was the worst we’ve had yet, and is now showing active disease in her esophagus, small bowel, and colon.  We’re currently trying our very last treatment option- a combination of steroids and mast cell stabilizers- to see if they will allow her to eat a limited diet without flaring her disease.  Jayden is, of course, thrilled to be eating again, but if her next scope still shows active disease, we will have to pull foods yet again.  As you can imagine, this entire process is frustrating and heartbreaking for Jayden and the whole family.

In the spring of 2012, I finally decided to see a GI for symptoms that I’ve had for years. Although my symptoms also didn’t fit the EoE pattern for adults(dysphagia, impactions, etc.), I asked for biopsies to be done.  The results came back showing severe EoE.Since that time, my own reactions have been escalating, and I’m struggling to manage my own disease on top of Jayden’s. My younger daughter is also showing GI symptoms, and we will eventually have to scope her to see if she is suffering from the same disease.

So, there you go. This is why I am hosting a fundraiser this Sunday.  I want to give back to APFED, whose website and annual patient conferences have helped me learn SO much through this journey. I want to raise awareness, so that when I spend 2 hours in the grocery store reading ingredient lists,or repeatedly turn down a play date invitation because there will be food involved, I don’t get strange looks and whispers about the “crazy mom”.  I want people to understand that this is a chronic and often debilitating disease with NO CURE.  I want a better quality of life for patients and families. I want better monitoring for this disease, so that I don’t have to put my 5 year old under general anesthesia multiple times a year and have biopsies taken throughout her GI tract. I want doctors to know what I’m talking about when I say we have eosinophilic gastrointestinal disease.  I want to find out why the incidence of this disease is rising, when it was virtually unknown only 20 years ago. And ultimately, I want a cure.

*note- many of these pictures have never been shared before, even with family and friends. I share them now not to garner sympathy, but to raise awareness of this disease and what so many families go through. (You’re looking at a picture of her with eczema, hives, and a swollen eye after touching a surface in a grocery store and then rubbing her eye, and of her at the hospital for a few of her scopes. I do also want to clarify that Jayden is also a special case because she has life-threatening food allergies on top of her EoE, so this isn’t something that is necessarily part of the disease, just part of our personal story.)

Link to Jessica’s  Facebook page post including pictures: https://www.facebook.com/notes/jessica-young/our-story-for-national-eosinophil-awareness-week/10151398729192213

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