Eosinophilic esophagitis (EE) is a chronic disorder of the digestive system in which large numbers of a particular type of white blood cell called eosinophils are present in the esophagus. The esophagus is the tube that carries food from the mouth to the stomach. Eosinophils are an important part of the immune system and play a role in fighting infection. This condition is characterized by vomiting, stomach or chest pain, failure to thrive (particularly in children), and difficulty swallowing.
Okay, so I'm finally able to post a bit about what's been going on this past week. We've had some difficulty getting online, due to the weather. As an added bonus, I lost my phone somewhere in Cincinnati.
Fisher had an EGD (a scope and biopsies of his esophagus) on Monday. Just from the how his esophagus looked at the time of the scope, Dr. A new that his EE was active and not well-controlled. The biopsy results were given to us Thursday and confirmed his suspicions with over 100 eos per/hpf in some places (over 15 is considered abnormal).
On Tuesday Fisher underwent some extensive allergy testing. Skin prick, patch and blood tests. He screamed for 20 mins. straight during the skin prick test. It took four adults - 2 nurses, myself, and the child life specialist - to hold him still so that he could complete the testing. To make matters worse, Fisher tested positive to 54 of the 75 pricks that were administered. He had multiple patches of hives all over his poor little arms. So now we have to restrict more foods (ie: tomatoes, blueberries, rice, etc.). Tough adjustment.
We were fortunate enough to get to move into the Ronald McDonald House on Tuesday. There is no other place I would rather stay! The house and the staff were absolutely amazing. They had a carnival on Wednesday and a magic show on Thursday for the kids. The house has 81 guest rooms, all of which were full, 2 commercial kitchens, 4 fully stocked play rooms, an exercise room, a library, a sanctuary, a craft room, and a live performance stage. We were so blessed to have the opportunity to stay there, and I really hope that we will be able to stay again on future visits.
Thursday was what I like to refer to as "game plan" day. We met with our team - Dr. A, Dr. A's nurse Staci, and the nutritionist - and decided on what treatment approach would be best for Fisher. Fisher also had a DEXA scan done earlier in the week that revealed that his bones are very weak, so for the time being we decided to avoid steroid treatment, which is often used to treat Eosinophilic Esophagitis. Obviously, part of his treatment plan includes adding some mega doses of calcium and vitamin D (he has a vitamin D deficiency, too), as well as removing any foods that he has EVER tested positive to. I haven't done an official count, but I think we're somewhere in the neighborhood of 30 different foods. So what will he eat? I'm so glad you asked! Fisher will be supplemented with a special amino acid-based formula that is hypoallergenic, meaning he should not have a reaction to it. This formula will comprise about half of his daily nutritional needs, more if he isn't eating well. Dr. A also wants Fisher to begin feeding therapy to work on his fear of food. It's difficult to know sometimes whether or not Fisher doesn't want to eat a food because it does make him feel bad, or whether he doesn't want to eat it because he is afraid that it will make him feel bad, even though the food may be safe. This is a very common problem with EE kids in his age group.
Some kids with EE have other underlying conditions that parents are not aware of. One of these conditions being a mitochondrial disorder. There are several types of mitochondrial disorders, some severe, others not. Fisher underwent some screening tests for a possible mitochondrial disorder. We ask that you would pray that Fisher does not have any of these disorders. The neurologists were not overly concerned after his evaluation, but wanted to be as definitive as possible.
Today we did a wrap-up of the week. The nutritionist wrote some nutritional goals for Fisher and put together a generalized daily meal plan. After another trip to the lab and an additional blood draw, Fisher and I headed back to our room to help Paul pack up the car. We are staying in Memphis tonight, and plan to be home tomorrow.