I know I haven’t written a lot of personal posts here at lately. There is a reason. Since January, my youngest daughter, L, has been on a health journey. It all started the second week of January when we were in the emergency room. She swallowed an M&M and it got stuck in her esophagus. This frightened L and thankfully we only live about 10 minutes from our local emergency room. With their quick thinking, we were able to get the M&M to go down but it opened up a can of worms so to speak. This was on a Thursday night and over the next few days, L kept complaining about food not being able to go down so she just quit eating. Milkshakes and liquids were her avenues of getting nutrients.
On Tuesday morning, I decided to call her allergist. They requested we bring her in right away. The allergist examined L and thought she had a stricture in her esophagus. This led us being sent directly to an ear, nose, and throat doctor. After he examined L, we were sent to the hospital for a barium swallow to check to see if there was a stricture. There was no stricture, but the radiologist showed me on the screen, her stomach was sending lots of acid back up her esophagus. We were sent back to the ear, nose, and throat doctor (ENT). He proceeded to put her on acid reflux medicine and scheduled a test called a manometry test to be done the next week. This test tells if your esophagus is able to move food to your stomach normally.
Fast forward to the next week, L’s symptoms were not being resolved and still unable to swallow food. She failed the manometry test, so the ENT scheduled an emergency surgery to have her esophagus dilated. She did well with the surgery and the pictures they were able to take were not pretty. He wanted her to stay on the acid reflux medicine and follow-up in two weeks. In the meantime, something just did not sit right with me. I felt like there was a bigger problem instead of acid reflux. I called her pediatrician and she was able to get us a fast referral to the closest Children’s Hospital.
The first appointment at Children’s Hospital was full of information and left us feeling like we were finally going to get a proper diagnosis. The pediatric GI put L on another medication and wanted her to be on it for four weeks before she did a full endoscopy and biopsies. Unfortunately, during this time L is still not able to eat which is just playing on all of our emotions. It is hard to see your daughter drop 16 pounds in less than two months. The doctor prescribed for L to be on NeoCate Splash. This is an amnio acid formula and is hypoallergenic.
It was time for the surgical procedure that would finally give us answers. The pediatric GI surgeon was so good with L and didn’t mind her million questions before she was put to sleep. After the surgery, the surgeon comes to talk to us and said without a doubt your daughter has eosinophilic esophagitis (EoE). This is a term that we were told was a possibility at our last appointment, but were praying and hoping this was not the case. We were just relieved and grateful to finally get a diagnosis for L.
What is EoE you may ask? This is a rare and chronic disorder. This is a type of white blood cell that builds up in the esophagus because the esophagus thinks food is a foreign particle. More than likely, L has had it for a few years as the doctor said it has damaged her esophagus greatly, where she has no motility. The signs were missed over the years and I do feel so bad for that. We are adding a steroid to hopefully help her regain the motility back. She was very swollen all the way up to her throat. They took 8 biopsies while they were in there as well so we will wait for those to come back. We are scheduled for a big meeting at Children’s the first week of April for a long term treatment plan. Currently, there is no cure for this disease. Although, Cincinnati Children’s Hospital has a division that is dedicated to finding a cure for EoE. For now, we will pray the steroid will at least bring back her motility in her esophagus and she will stay on the formula so she doesn’t drop any more weight.
We are grateful for Lyndsee’s surgeon/doctor. She stayed right there with us answering our questions. This will be a long journey to see what foods are causing EoE in L’s body. I will update her journey here so maybe in return it can help other families.