Well, as most of you know by now, there is never a dull moment within the Lothrop home. I just wish going to the doctors for something routine would stay that way, routine!
Our son, Jim, has always been a choker and very slow eater. We use to tease him about being European because he ate so slow. We would all be finished and would wait another 45 minutes to an hour on Jimmy to finish his food. We thought he really loooved his food. About a year ago this coking issue became more prevalent and I kept saying "as soon as Liz is in Maintenance I will get you to the doctor for your throat" that time came two weeks ago.
We met with Dr. Cotton for a consult and were instructed to have a barium swallow. A barium swallow is a medical imaging procedure used to examine the upper GI (gastrointestinal) tract, which includes the esophagus and, to a lesser extent, the stomach. They used barium sulfate, a type of contrast medium that is visible to x-rays. As the patient swallows the barium suspension, it coats the esophagus with a thin layer of the barium. This enables the hollow structure to be imaged. Upon examination of the xrays, Dr. Cotton found what is called a congenial web across his esophagus, which was constricting his esophagus and not allowing him to swallow, plus his esophagus is considerably smaller than that of an adult.
Fast forward to today. Jim and I trudge on down to Children's for the stretching of his esophagus, a one time deal, right?! 15 minutes into the surgery I was called to the desk where I was instructed to pick up the phone when it rang, Dr. Cotton wanted to speak with me. I immediately new something was not right. The surgery was to take an hour and we were only 15 minutes into it. He proceeded to tell me that so far everything on his end was fine but when he went to scope, he noticed some "abnormalities" in Jimmy's esophagus and was calling in a specialist to look while Jimmy was under. Fast forward another hour, both doctors came to speak with me. Dr. Cotton said "my job is done, here is your new doctor, Dr. Putnum, world renowned doctor for what your son has. Jimmy has a disease called Eosinophilic Esophagitis.
First of all, I have to learn to pronounce this disease. We all know what an esophagus is but what is eosinophils? Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cell (WBC). Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Eosinophils are an important part of the immune system, helping us fight off certain types of infections, such as parasites. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections (caused by parasites), eosinophil associated gastrointestinal disorders, leukemia, and other problems. When eosinophils occur in higher than normal numbers in the body, without a known cause, an eosinophilic disorder may be present.
Let's just put it right out there, there is no "cure" for EE (Eosinophilic Esophagitis), but treatment can help alleviate symptoms and prevent further damage to the esophagus/gastrointestinal (GI) tract. Treatment of eosinophilic disorders will vary based on the location of the eosinophils, severity of symptoms, and other medical problems that Jimmy has. In most cases, dietary measures and medications can significantly improve problems related to the underlying eosinophilic disease.
Jimmy's prognosis for EE does not appear to limit life expectancy and there is currently no strong data suggesting EE causes cancer of the esophagus. In some patients, EE is complicated by the development of esophageal narrowing (strictures) which Jimmy does have and does cause his food to lodge in his esophagus (impaction). It is not clear how long EE has to exist before strictures form. However, since the natural history of EE is only emerging, careful monitoring and long-term follow-up is advised. The initial diagnosis of EE can be overwhelming and often affects the entire family. A positive attitude and a focus on non-food activities go a long way in learning to live with EE. With proper treatment, Jimmy can lead a normal life.
We are in the process of setting up a consult with Dr. Putnum for the course of treatment Jim will take. Being 18, he will have the final say in what he will do. The first thing that needs to be done is the clearing of the eosinophils in the esophagus, which is done through a strict diet and steroid use. There are several diets which Dr. Putnum will go over with us during our consultation and not one of them will be easy or fun but is necessary. This is a life long disease. Jimmy is not a stranger to medical adversity in his life. He will handle this with the grace and dignity that I have seen him do in all his situations.
Please pray that we start on this journey soon and Jim will eventually find the relief he is looking for.
Pray that he has the discernment that he needs to make correct and important decisions concerning his medical treatment.
As always, continue to pray for Elizabeth. She had her BIG chemo on Tuesday and has been down and feeling very puny since.
Continue to pray for my entire family. We have been through so very much in the past three years and need more prayers than we have a right to ask for. Life can really stink at time but what really matters is that we have each other, you included!
Blessings,
Christine
