Jacob had another allergy test done today. This was the one I hoped to do after his August allergy test removed Broccoli, Coconut, Apple, Lemon, Potato, and Turkey from the rotation. After getting these results, I went home and made a list of everything left in his diet that had not been tested yet. I needed to make sure we were not replacing one allergen with another, so requested another test to be done. There was about 50 foods to be tested, but on a just 3-year-old, there is only so much skin available on their back to do the tests. Jacob had 30 foods tested today. These are the allergens added to his list :
- Hemp [Hemp Milk]
- Summer Squash
So essentially there is NO grain nor protein that is ‘safe’. He tested fine still for shrimp and lobster, but these being part of the top 8 allergens, and considered to be part of the EoE elimination diet- I am more than leery of adding these to the mix. Especially since it does seem that he is reacting to everything he is eating. I have a short list of foods we tested that seem to be ok, [but for how long?] these include: carrot, blueberry, avocado, tomato, cantaloupe, cranberries, pineapple, pear, raspberry, prune, cinnamon, chia, arrowroot, tapioca, sweet potato; salmon[was ok when tested in Aug. so?], [and lobster and shrimp]. Hardly a complete menu.
Foods that he has yet to be tested include: ginger, vanilla, onion, garlic, winter squash, celery, cucumber, spinach/kale, cabbage, cauliflower, peach, apricot, mango, grapefruit, cherry; salmon & black olive [retest], [maybe test: palm, cane, yeast]. and after that- there really isn’t anything left.
So, what do we do now? That is the question. At this point, the GI feeding tube is looking more and more like the logical next step. I am very concerned about the gaping holes in Jacob’s diet nutritionally. I meet later this week with a nutritionist to discuss these concerns; and am awaiting a call from our GI doc to try to figure out what we are to do now. We are to have another GI scope in about 3 weeks to see if/how the Budesonide has treated the EoE flare. I am concerned at this point because even having been on it for 5 weeks I still have been seeing coughing and choking when he is eating, so not overly optimistic the scope results will be good if we were to do it now. We may see some improvements now that we are taking MORE things from the diet rotation. Honestly, at this point and time, I am prepared to accept the need for a feeding tube, as much as it breaks my heart to put him through even more medical procedures. I am at a loss, and just want him to be healthy, and to not be responsible for feeding him foods that are making him sick. I will update when once the next decisions and steps are figured out.