We have been busy with all kinds of doctor appointments these past few weeks! Jacob had his 1 year post chemotherapy oncology scans done. I was a wreck with Scanxiety prior to getting the test results. He had an ultrasound done on his kidneys and a chest CT which required anesthesia. I have seen enough kidney ultrasounds done on Jacob that I was fairly confident that there was nothing blatantly obvious there. I WAS worried about the chest CT, as the one done in January noted a mass on each lung, but this CT showed no change of those anomalies, so we shall breathe a sigh of relief, and wait another 3 months until we do it all again with a MRI of his kidneys, and a chest x-ray.
Tuesday of this week I drove down to Boston for appointments with the EGID Clinic at Boston Children’s Hospital. We got to meet with our allergist, a GI doc who changed out Jacob’s g-tube, then we met with a nutritionist, a social worker, and wrapped it up with doing skin prick testing.
Jacob tested still allergic to: orange, turkey, chicken, rice, coconut, and rice. He is newly allergic to cherry, and cucumber. He is testing not allergic to Enjoy Life Dark Chocolate, cocoa, cranberries, pear, carrot, sweet potato, potato, and banana! SO we are SUPER excited to get to ADD a few foods to the “Can Have” list! The plan formed with the EGID team for Jacob is that we will get an endoscopy done, to give us a baseline of where his Eosinophil count is and how his esophagus looks; then we shall be starting up with treating 1x day with Budesonide mixed with Neocate Nutra- an amino acid powder that Jacob will then drink, to treat the EoE. Once he is on the Budesonide, we shall look at slowly reintroducing: coconut, chicken, peach, and rice. The thought is the Budesonide will prevent the EoE from flaring, as long as Jacob doesn’t have any other allergic symptoms from the foods we trial. After 8 weeks, we will rescope and gauge see how his esophagus and eosinophilic count looks. It won’t be enough food to not need the feeding tube, but it could be enough to allow social eating. Jacob was VERY excited about getting to have a banana! He happily munched one after the appointment. Sadly over 1 1/2 hour later, while stuck in bumper to bumper traffic trying to get out of Boston, he threw up in the backseat! He is less enthusiastic about having banana now. I am not sure why he threw up. Overall I am delighted with how this appointment went!
As an added bonus to my trip, I was met at the hospital by my ‘virtual’ friend, Dr. Lama Rimawi, of Tasterie who is even more lovely in person! We had a wonderful visit and chatted about Jacob, and food allergies, and my ‘other pet project’ [wink wink- more coming soon on this!] Jacob then got to have his first ever dentist appointment Wednesday, which to my great surprise went very well once the hygienist got him to open his mouth! 🙂 Jacob will be going next week to have his endoscopy done. I look forward to seeing those results as well.