Eo zino what? Dealing with and saying Eosinophilic Esophagitis
Posted Oct 16 2008 12:00am
You know, I remember the day that I sent Cheri a video of Ewan and Stacey during a therapy session. Poor Ewan didn't want to drink, couldn't handle his chest even being touched, and then after drinking some water for the session (it was about swallowing) the poor kid upchucked all over my favorite sweater. I remember Cheri sending me a message that, "Hey this looks like an esophagitis, maybe we should check for Eosinophilic Esophagitis or other problems." I remember thinking, okay I can figure out the esophagitis part and I could figure out the eosinophilic part--I did take Latin after all--but for the life of me I couldn't figure out how those two words fit together.
After Ewan was diagnosed with Eosinophilic Esophagitis (this could be the new tongue twister to replace Peter Piper Picked A Pepper) I remember trotting off to the see the multi-talented Miss Sibyl. For those of you who don't know, Sibyl Cox is the ultra fabulous dietician for this feeding team. My husband and I were scared to death about what we had read and heard about with eosinophilic esophagitis. One website listed it as one of those RARE disorders with basically no information out there about it. Other websites had more information but still very scary to newbies like us. It sounds silly but my husband and I were just certain that Sibyl was going to get rid of corn products, which meant corn syrup, which translated into no Sprite or practically any other food in the supermarket.
After meeting with Sibyl, she did not say no corn, but she did say no Dairy, Eggs, Wheat, Soy, Peanuts, Tree Nuts, Fish, or Shellfish for 8 weeks. I was thankful for the corn but holy cow if you take all that other stuff away--what the heck are we going to feed this kid for 8 weeks? It was like going out into the Atlantic Ocean with a canoe and no paddles. The first trip to the supermarket felt like someone had given me Mission Impossible.
I always say the worst part about any dietary managment kind of disorder or disease is going to the grocery store the very first time. I think it should be mandated by law that families get to take a veteran food allergy shopper with them that first time. I think I spent about 3 1/2 hours in the store that first night. And I'm here to tell you I felt like everyone in the market was staring at me because I was staring at each and every label and swearing under my breath every time I thought it would be an acceptable food. You swear when you read through the whole label only to get to the VERY end and see one of those top 8 foods. Damn! There's an egg product. Damn! There's whey--stupid whey--what the heck is whey anyway? There's another tongue twister--this disorder is full of them!
But we got through it. Maybe with more gray hairs and a little less weight, but I remember one of the photos I took of Ewan during that time period with no eggs, no dairy, no peanuts, no tree nuts, no wheat, no soy, and no fish or shellfish (as if)--and that kid looked so healthy. Beautiful clear eyes and face--just glowed with health. The very thing that his body needed to run that engine was also the very thing that was making him sick. What a horrible crappy twist of fate that eosinophilic disorder has turned out to be for some of those who have it.
But it is manageable. It takes time, it takes a lot of energy, it takes more doctor trips and outpatient surgeries than anyone would care to do, and it takes patience because of all the ups and downs. My son knew the anesthesiologists and nurses, the route we took to the hospital, and what kind of flavor he wanted his anesthesia mask to be. He was furious with Dr. Fishbein for taking his milk away--by the way Dr. F, he still blames you for that! The other day Ewan asked if he could be a doctor when he grows up. I said, "Ewan, you can be ANYTHING that you want to be but why do you want to be a doctor?" He said, "So I can look inside and say that I am NOT allergic to milk." Nice try buddy, but I don't think they let doctors scope themselves!!! ;)
I've come to realize that while the diet can control a lot for Ewan, there's a lot that we cannot control. There's still something about those seasonal allergies that can mess him up. There's still something about those minor colds that can turn into weeks of crappy swallowing. There's still something about that stinking reflux that can cause those day long hiccup spells. But they are fewer and fewer nowadays and we are learning to look for misslabled or misgiven foods and to keep the windows closed and the carpets swept with the fancy smancy vacuum cleaner.
For those of you who know someone struggling with eosinophilic disorder or a parent who is struggling to cope with the demands and stress--be patient while they try and spit out that name--Eosinophilic Esophagitis or Eosinophilic enteritis and Eosinophilic gastroenteritis, or...what the heck I like ED for eosinophilic disorder--but too often people think I'm talking about Erectile Dysfunction! Ooops, that won't work!
Just some thoughts I have today so Happy Chaining everyone and for those you dealing with ED (no NOT that one!) happy shopping!