I took Jacob down to Boston Children’s Hospital to meet with the EGID Clinic team there. We saw our GI doctor and our Allergist, to follow up on Jacob’s EoE today. I started going to Boston because I was frustrated here since our doctors were not part of a team for managing his case which left me to judge and juggle testing, results and a care plan- which I felt entirely unqualified to be doing. I wanted smarter people in the room to help manage and call the shots for how to treat and manage his case.
We had not been in for follow up in Boston for two years- having reached a steady manageable plateau with his EoE and care. However in August Jacob had an endoscopy which showed worsening EoE symptoms in his lower esophagus suggesting reflux or GERD (Gastro-Esophageal Reflux Disease). The decision was made to add Prevacid to his daily medicine routine in addition to the daily dose of Budesonide (steroid) mixed with Splenda, which he has been on for 3 years now. We did a follow-up scope last week to see if the EoE count and lower esophagus was improved after adding the Prevacid- I was pleasantly surprised to hear the results! Although visually- his esophagus still has healing to do- the biopsy samples taken were clear! No noticeable eosinophils were seen. Needless to say- the medicine seems to be working at keeping his symptoms and EoE controlled.
We had not done any allergy testing for about two years with Jacob either, so as part of today’s visit I brought along a list of the foods he is eating- those most frequently consumed (daily) and those consumed on occasion; as well as a list of foods we would like to test for to see about re-introducing into his diet. Jacob lost almost all food from his diet by age 3. At that time, his diet was restricted to 5 foods only which required that a G-Tube to be surgically placed and an amino-acid based formula, Ele-Care became his sole means of nutrition.
After discussing with our allergist about which foods we wanted tested, we proceeded with doing skin prick testing. Jacob showed continued reactions to the following foods tested: Beef and Oats were his biggest reactions, also Haddock, Raspberry and Squash were still causing reactions.
The best news was that foods we tested that he did not show any reaction to include: Strawberries, Blueberries, Watermelon, Grapes, Oranges, and APPLES! (He was SO EXCITED about this one!) Tomato, Pork, Flax, Corn and Salmon!!!
Jacob had not had or tasted apples since he was 2 years old. He doesn’t remember them. He was so excited to have his first apple today when we got home!
I am so used to getting bad test results- I almost can not believe how great these test results were!! We are SO EXCITED about all the new foods this means we can try! Apple Pie, Apple Juice and Apple Slices (“From McDonalds Mom!”) School snacks he can have with his friends- “Mom, Are oranges sour?” “Mom! I can have POPCORN on Movie nights!” “You mean I can try BACON?! No more turkey bacon?!!” “I can have Salad with Tomatoes?! AND this means I can have KETCHUP?!!!”
Needless to say- we are in feeling incredibly blessed and happy with today’s results! We will begin introducing each food- one at a time over a course of days for each food. If he starts having reactions, we will stop said food. Jacob’s first choice -obviously, was apple! The next food he wants to try is corn! I am going through all the recipes I can try to make for him now! I was excited about the idea of blueberry pancakes, and Portuguese Rice (Rice with tomatoes and onion and red pepper sauce cooked in chicken broth); Corn chowder, Corn turkey dogs! Corn bread! What are some other recipes you think we should try?