My Story: Caden S.

My son Caden was diagnosed with Eosinophilic Esophagitis and Eosinophilic Colitis in January 2010, just a few months after his 2nd birthday.  We had mixed emotions with the diagnosis.  On one hand, it was a relief to finally know what had been causing my son debilitating pain since he was 4 months old.  On the other hand, an EE/EC diagnosis didn't exactly come with a rosy future.  Its a life changing diagnosis, not just for the individual but for the whole family. 

Caden was diagnosed with multiple food allergies at the age of 6 months, and under the guidance of our allergist we continued to pull problematic foods from his diet until he was eating just 10-15 foods.  Yet his symptoms continued.  More often than not he was in too much pain to play or walk.  He'd spend days at a time crying and shaking in pain.  We met with a pediatric GI who performed a scope and colonoscopy on Caden, ultimately diagnosing him with the EE/EC.

We thought we had been through a lot with the multiple severe food allergies and would be well prepared for the challenges of dealing with an eosinophilic disorder.  We were wrong.  The challenges of raising a child on a limited food diet seemed to pale in comparison to the challenges of raising a child on a no food diet.  Have you ever stopped to think about how often social situations are centered around food?  Outings to church, grandma's house, or even library story time end in tears as my 2 year old begs to have food like everyone else. 

Then there is the financial strain.  We are currently lucky enough to have insurance that helps cover Caden's feeding tube supplies and his specialized formula.  But I worry every day about the prospect of what next year will bring.  All it would take is my husband's company changing insurance providers to put us into financial ruin.  We could never afford the $3,000 per month that is currently being billed.

We have found humor in our new normal as well.  My husband and I chuckle at the most common question we get asked.  When we tell people Caden can't eat food the response is usually, "Not even x?"  Nope, not even food x.  Its also fairly entertaining to watch our uninhibited child lift up his shirt to show off his feeding tube button to strangers.  The look of shock on their faces is priceless.  Few know what to say.

As my son grows each new stage of life will bring with it more challenges.  But we also hope each stage will bring with it new humorous situations.