A lot’s happened since I last wrote about our family’s experience with eosinophilic esophagitis (EoE), Life with EoE Times Three, on Cincinnati Children’s blog! I’d like to give an update on my 7-year-old daughter, Tinleigh, because she’s living the allergy Life. She’s reaching new milestones. She’s now in 1st grade, celebrated her 7th birthday, and even eats lunch in the school’s cafeteria!
Those sound like pretty typical milestone for most kids. But for a child with severe food allergies and eosinophilic esophagitis, they were quite an undertaking.
Tinleigh’s Eosinophilic Esophagitis (EoE) Diagnosis
You see, Tinleigh was diagnosed with eosinophilic esophagitis when she was 14 months old. Today she can only eat fruits and vegetables. She has anaphylactic reactions to beef, chicken, pork, dairy, wheat, eggs and soy.
She’s still drinking from formula bottles. It hurts my heart. We’ve been fighting this fight for six years. It kills me when she asks for something to eat that she can’t have. And on the flip side, we get really excited when we find a food she can eat. The highs and lows are so hard on our emotions. It’s just a part of our daily life.
Tinleigh Now Attends 1st Grade and Eats in the Cafeteria
But the good news is that she was able to attend first grade this year, and even eat in the school’s cafeteria. During Tinleigh’s kindergarten year she was having airborne reactions to beef and dairy. So we couldn’t allow her to sit in the cafeteria for the fear of having reactions.
But this year has been absolutely amazing. She’s surrounded by a group of people who understand the importance of keeping her protected. After much planning, we decided to allow her to eat lunch in the cafeteria.
For the first week, I sat with her during lunch. I was so nervous—it was like watching a bomb to see if it is going to explode. Fortunately, I think we have finally gotten her airborne reactions under control with medicine, and I eventually relaxed.
She absolutely loves being in the lunch room. She is isolated at the peanut free table located closest to the exit doors. But it doesn’t matter because she gets to sit with her best friend who isn’t in her classroom this year. The two of them giggle and chat through the whole lunch period. It’s adorable. She’s also allowed to have one other friend join her as long as she has a hot lunch from the cafeteria. No packed lunches.
For Tinleigh’s safety, we have to get 97 sets of hands clean after lunch is over. It’s quite the challenge to get that many 7 year olds to wash their hands in three minutes, and do it well. Since Tinleigh’s class has gym following lunch, it’s important to make sure it’s done right.
To make this easier, the school asked for hand wipes donations from the community. They estimated they would need 17,000 wipes to get through the school year. Our school and community donated nearly 54,000! I was so touched by the generosity, I had to choke back tears. I mean, who cries over donated wipes? This mom. When a community makes it possible for one of my kids to have some semblance of a “normal” life, I am moved to tears.
Which brings me to Tinleigh’s birthday this year. The milestone is always interesting for kids with EoE—and depending upon what foods they can or can’t eat, a lot of creativity is needed. I made Tinleigh a mug cake this year, which consisted of coconut flour, oil, sugar and water. I mixed it all up right in a coffee cup then microwaved it for 90 seconds. She loved it!
We also let her have her first friend birthday party. I was quite nervous, knowing that we couldn’t have a “normal” cake for her friends. I wondered what they would think? My mom and I came up with a cake made of fruit. I also melted Enjoy Life chocolate chips and drizzled it over the strawberries. They thought it was wonderful, and kept asking for more. Tinleigh thought it was the best birthday ever!
Tinleigh Is Living the Allergy Life
This past summer, Tinleigh did the elemental diet to see if it would help clear her EoE. Unfortunately, it did not—she still had eosinophils in her esophagus. She is truly in that rare group of kids with the disease. She has been on steroids ever since and we are hoping they allow her to eat.
So currently, she’s able to eat all fruits and vegetables, as well as coconut and cocoa. She’s been doing amazingly well with this. She can even have tacos! They’re made up of a corn shell with pinto beans, diced tomatoes, black olives and lettuce. With so many members of my family having EoE, tacos are the one meal we can all do together. They’re just made up of different things.
We are coming up on our next trip to Cincinnati Children’s, where Tinleigh will receive another scope. We’re hoping to see that the steroids are working and she’ll be able to stay on these foods and back off on the number of scopes that are necessary.
Either way, Tinleigh won’t let the news slow her down. And she most certainly won’t let EoE slow her down. She has her sad moments, but this little girl brightens everyone’s day and makes the most out of it. She is definitely living the allergy life.