In January, 2007, my son Connor was born. He was healthy, happy, and the second joy of my life. At the age of 3 months old, he was an average infant, and my wife was ready to go back to work as a nurse. As a precaution against running out of our supply of saved breast milk, we had a can of formula for back-up. At some point in the middle of the day, I had to use the formula, but when I gave it to Connor, he broke out in hives. Milk allergy. 

We switched over to a soy-based formula, and he seemed not to have a reaction to it, certainly not like he had to the milk-based formula. But Connor had stopped taking his bottles. Maybe a few ounces a day, but that was it. As he moved on to baby foods, we still had no luck getting him to eat. His refusal to eat was almost violent, as if he was in pain. Repeatedly, our pediatrician told us that refusing to eat was normal at his age, just establishing his independence. But his refusal to eat was much more than just being finicky. We knew it, but getting someone else to believe us was a different matter. 

For months this went on, Connor not eating, our pediatrician unable to find anything wrong with him. He stopped gaining weight. Between 3 months and nearly 8 months, he did not gain a single ounce. Finally, he was officially designated as "failure to thrive", the nondescript diagnosis that basically means the doctor doesn't have a clue as to what the hell is wrong. When he was 8 months old, we finally got an appointment with a pediatric gastroenterologist. (Not that we weren't trying, but have you ever tried to get an appointment with a pediatric specialist without a referral?) That is when we finally got the diagnosis; eosinophilic esophagitis. 

Basically, eosinophils are a type of white blood cells involved in allergic reactions. When triggered, they cause severe inflammation, and this was happening in Connor's esophagus. Because most of the things he is allergic to do not cause external signs (like his milk allergy did) we were giving him things he was allergic to and not knowing it. And it hurt. Bad. Badly enough that he wouldn't... couldn't eat. And at his age, he had no way of telling us, other than to violently refuse food. 

So we had our answer, at the time, we thought we were home free. All we had to do was make sure we kept things he was allergic to away from him, and feed him things he was not allergic to. Simple enough, right? So next came the allergy tests. A lot of them. We found out he was allergic to milk, soy, peanuts, eggs, and a handful of other things. In addition, hypoallergenic formulas were off the list as well. He had to go all the way down to an elemental formula, only amino acids, no fully formed proteins. But still, he wouldn't eat, wouldn't grow. 

As time went on, Connor got weaker, more lethargic, less responsive. He was a shell of a baby. But the gastroenterologist told us that was all that could be done, so we were left frantically trying to get him to eat, watching out son waste away. Secretly, Melanie and I both feared the worst, that we would lose our son. Neither of us would voice this out loud, but both of us knew the ultimate outcome of starvation.

Then we found out about the Cincinnati Center for Eosinophilic Disorders (CCED). A clinic at the Cincinnati Children's Hospital devoted to nothing but researching and treating eosinophilic disorders. Connor was admitted to the clinic in November of 2008. He was nearly 2 years old, but he was the size of an infant. Officially, he was less than one percentile in size, which means that if compared to other children his age, he was smaller than 99% of them. While at the CCED, he was treated aggressively. He had an NG tube placed which would allow us to feed his specialized formula to him directly into his belly. More thorough allergy testing was administered. We found out he was indeed allergic to several things our previous physicians said were safe. Things that we were feeding him. Things that were HURTING him. That's not a guilt that is easy to get over.

To say that the CCED improved Connor's life is an understatement. They saved it. While Connor still has hurdles to overcome, he is gaining significant weight for the first time in his life. Only 3 months since his first visit to CCED, he was back up to the 30th percentile. For the first time in his life, he is happy, vibrant, hyper, destructive, mischievous and loves to torment his big sister. In other words, he is a normal little boy.

We were lucky. Connor was diagnosed early. Most are not so lucky. Many kids with EE are improperly diagnosed for months or years. Some are undoubtedly never diagnosed. Kids with EE, if not properly diagnosed and treated, face a lifetime of malnourishment, if not death. Because of deficient nutrition, kids with EE are at a higher risk of delays in both physical and mental development. But with early diagnosis and proper treatment, kids with EE can live normal, happy lives. Early detection can mean the difference between a healthy, normal life and a life of struggling to grow and prosper. It can even mean the difference between life and death.

 I am not trying to raise funds to help my son, we are fortunate that our Connor is already in the best of hands. We want to help those that come after us, to increase their chances of early diagnosis and proper treatment. Our goal is to help CCED and Cincinnati Children's Hospital educate physicians and other health care professionals about EE so that is it more often diagnosed early and treated correctly. With your support, many more kids with EE and other eosinophilic disorders can lead happy lives tormenting their big sisters!