Welcome to our CaringBridge website. This was initially created to keep friends and family updated about Patrick and all his lung problems with the pesky CCAM en utero, and the afternath of his birth. ****************************************************************************** Now, the journal continues....wading through 2 kiddos having eosinophilic esophagitis (EoE). I can't believe that almost 4 year have flown since Patrick spent 24 days in the NICU, was vented for 5, and then came home. His current diagnosis, almost 4 yrs later (again, where has time gone!) -Eosinophilic Esophagitis (EoE) -Asthma -GERD -Multiple food allergies Patrick was diagnosed with EoE @ University of Arizona, at the end of 2011, after an upper endoscopy with biopsies showed evidence of inflammation of the esophagus, and the presence of eosinophils (Eos'). There should be absolutely no eos' anywhere in the body. We have moved our care of the EoE to the comprehensive clinic @ National Jewish in Denver, Colorado, which has one of the best clinics in the country for EoE. Currently, with Patrick, we are trialing one food a month, have Patrick on swallowed steroids, and scoping (in Denver) every 4 to 6 months to see if there are eosinophils present...if there are, it would mean that one of the foods we are "trialing" are not safe for him to heat. Hopefully this won't happen.... The following foods he can eat/we are trialing.... As of December 2023 -Avocado -Corn -Rice -Chicken -Turkey -Black bean -Sunflower -Raspberry -quinoa -Peanut -Almond -Crushed red pepper -Arnold Palmer iced tea (we just added it.... CoVid fatigue goes along w food) Gluten free oat, brussel sprouts, lettuce, brown sugar, maple syrup, dark chocolate, radpberries, blueberries, Ripple drink, honey. A game changer, though politically I cringe, is that he can eat Chick FIL A grilled nuggets (not the breaded ones) and their french fries. of my favorite websites, which explain EoE (especially the Apfed website), and a great blog from a pediatric immunologist who has 3 kids with horrible food allergies.
http://theallergistmom.com/ http://en.wikipedia.org/wiki/Eosinophilic_esophagitis http://apfed.org/drupal/drupal/gus2 ********************************************************************************* So, as of Oct 16, 2012, Anna too was diagnosed with Eosinophilic Esophagitis..... once Patrick was diagnosed, there had been a nagging feeling in our minds that Anna could have it, mostly because her GI system was way worse as an infant than Patrick's was, she was failure to thrive (FTT), and weighed a lot less than Patrick.... What sparked the question with HER was egg refusal (in raw form, not baked), saying her throat hurt. Her Tucson immunologist, when performing an environmental allergy prick test panel on her, asked if I wanted to add the food panel; I was curious if she were allergic to egg or not due to her saying her stomach hurt when she ate it. Even though Patrick obviously has FA's, I didn't want to go through a whole food allergy panel on Anna solely because Patrick has FA's. So I just said to add egg. When that prick test came for egg back negative (not a food allergy), the question about the possibility that egg could be an inflammatory trigger was loosely brought up. I had asked the local immunologist about SLIT testing for cats (sub lingual immunotherapy testing; she's asthmatic allergic to them), and short of long, immunologist said "no way, jose", because of Patrick having EoE.... (this was all in the same appt). The thought she could have EoE kept sticking in our minds, so we brought her, with Patrick in October 2012, to National Jewish, to see Patrick's docs. After Anna made some striking comments to the GI about feeling like bananas stick in her throat, he decided that she should be scoped, and low and behold... EoE. She has much more allergy testing to go through (at home, not in Denver), but as of now, we've removed the following, to which she is IgE food allergic.... as of September '13, the list of foods she is off of are the following..... This is current list as of December '15 -Absolutely all nuts and tree nuts -Soy (soybeans, tofu..... Can have oils, flour, etc) -Buckwheat. (Really? Not normal wheat....but Buckwheat????) -Spinach -Grapes (raisins, plums, juice, etc) -Corn -All berries except for raspberry -All melons -Bananas -Avocado -Walnut -pistachio -hazelnut -dairy (can have it baked) -Onion And her list of diagnoses are continuing to grow... EoE, asthma, multiple FA's and horrible EA's (environmental allergies; she is currently getting environmental allergy shots). POTS, EDS, MCAS, heat uticaria.... at least this CoVid summer 2020, hottest summer Tucson, we've watched bad movies and kept kids occupied indoors at home. *********************************************************************************** So....hang on and enjoy the ride with 2 kiddos, both having asthma, food allergies, and eosinophilic esophagitis. Her primary team is in Denver, too, with her local immunologist leading the way on the allergy portion.
