I have three kids and a husband with EoE. So I guess that’s really four under one roof! I also have a baby that may be following suit; my guess is that she will probably be diagnosed in the next year as well.
If you’re not familiar with EoE, or eosinophilic esophagitis, it is an inflammatory disease that manifests in the esophagus. The side effects and severity are a little bit different for everyone, but in my house it means that the simple act of eating is incredibly difficult. And meal planning. And doctor’s appointments. And daily life and tasks.
So what is life like? It’s darn hard. I’m not going to lie, but I keep smiling. Having three kids with EoE is like facing your worst enemy, everyday. Ours just happens to be food. I have two kids with feeding tubes because the disease got the best of them. Their bodies could not tolerate enough foods to sustain their development and growth. They were falling off of the growth charts. Then I have one that can eat enough to thrive, yet is so sick of what he’s allowed to eat that he won’t actually eat it.
Taking three kids to the doctor at the same time is a difficult task, but having three kids scoped at the same time takes it to another level. An endoscopy is a medical procedure for their doctor to see what’s happening with the esophagus, which is necessary to see what foods we need to avoid and which ones we can start trying. They go under anesthesia one by one. After the procedure we have to be ready to handle whatever condition each kid is in when they wake up. Cranky, screaming, crying or puking you never know what you’re going to get. A lot of times they will wake up happy. Then we wait a few days for results.
On results day I have taught them that we have to cheer on the other sibling that has a clear scope and gets to trial a new food. If a sibling fails the scope test then we let them know it’s okay to be sad, but to hang in there because we’re going to figure out what the food trigger is in order to get a clear scope in the future. I have also tried to teach them that if you’re the only one that passed the scope test and get to trial a new food to not gloat about it. It’s hard for the others to see you get to try a new food when they don’t.
Our kids with tubes are scoped every three months as we trial new foods. Sometimes we trial three foods at a time. For bigger foods, such as the top eight, we trial one at a time. We cross our fingers during that three month process and pray for a clean scope. Sometimes we don’t get past two weeks because they start to show signs of an allergic reaction to the food. It’s all a guessing game. There’s no clean-cut manual for EoE and introducing foods. Every kid is different.
Aside from grocery shopping, it’s toughest for me to make dinner. I have my two tubies, but they each have a few foods they can eat. They never want the same thing, so I have to make two different plates right out of the gate. Then I have to make something wonderful for the one who won’t eat, or, he won’t eat it. We have started introducing foods to the baby. For each bite she takes we sit and stare at her, waiting for some sort of reaction. Last, I have to make dinner for my husband and I. Do we have a sit down family dinner? No. It’s hard for my husband and I because we both grew up eating a family dinner every night. Now I’m lucky to get all three kids sitting at the same time. My husband and I eat dinner after the kids go to bed. It’s just easier. That way they aren’t drooling over our plates, wanting the food that they can’t have. However, my husband’s diet is limited so there are certain foods I don’t even have at our house. Dinners can get boring even for the two of us.
I also have the daily task of mixing 87 ounces of formula for my two tubies. That does not include the amount of formula that the baby drinks. I can honestly say that I feel like all I do all day long is mix up formula, fill bags, and then try to talk the tubies into hooking up to it. The three year old is not easy to convince all of the time. And the six year old can debate with me about the reasons why he should wait or declare he would rather eat a meal instead. I am thankful for that formula though. The two of them have grown so much in such a short time since receiving their tubes. Best and hardest decision we have ever had to make for them.
So that’s what it’s like at my house. There’s a lot of frustration. The kids are often broken hearted, begging for foods they can’t have, sick of foods they can have and hating feeding tubes, all while dealing with hives, swollen eyes, vomiting, tummy troubles, itchy mouths, mystery rashes, anaphylactic reactions, epi pens, benadryl, inhalers, and nebulizers. At the same time, there is a lot of loving of each other, caring, compassion, close bonding, enjoying new-found foods at the grocery, talking about the day they won’t have a tube, living life the best we can and making the most of this horrible disease.
Editor’s note: For more information about treatment for eosinophilic disorders, please visit the Cincinnati Center for Eosinophilic Disorder’s website. And to connect with other patients and parents with EoE, the CCED’s Facebook page is available as a resource.
To read more about Kara Root and her family’s journey with eosinophilic esophagitis, go to her blog Living the Allergy Life.