Jacob has Eosinophilic Esophagitis aka: EoE; an inflammatory disease of the esophagus. Eosinophils are a type of white blood cell, that are not supposed to be found in the throat. If there are more than 15 in a biopsy sample a person is diagnosed with EoE. Jacob has had 4 such scopes done. His counts have been: >25, >100, 0 in June after 8 weeks on medicine, and the newest result from Monday’s scope are >30. When eosinophils that normally fight of infections and parasites, are found in the esophagus, it can cause trouble swallowing, coughing, choking, vomiting, food impacting, trouble eating, feeling full too soon, weight and growth issues. It also causes inflammation, where cells actually rupture open spilling Eosinophils from blisters, linear furrowing, essentially rings form along the esophagus, and scarring, narrowing of the esophagus. The tricky thing with EoE, is sorting out the cause! They react to triggers, usually allergens, food or environmental, so we do allergy tests to try to remove irritants from the diet/environment to prevent the EoE flare up, and the inflammation and issues that go with it. It gets harder when the trigger is not an allergen, for example, you can have corn not be an allergen, but it can be the EoE trigger. Sound confusing? It is. It really is crazy-making!
Jacob was diagnosed in October of 2011, at that time his Eosinophils count was >25. Our treatment was to use Flovent for about 2 mos. We are not sure how it worked because all of this happened at the same time we started chemotherapy. The follow-up scope was postponed due to his chemotherapy treatments.
In April, Jacob’s Eos count was >100. We treated with Budesonide.
In June, we re-scoped to check the Eos count, and were very happy when biopsy result was 0.
We did his new scope on Monday. I had suspected he was flaring up because I had noticed a random cough for about 2 weeks, and some mild choking on occasion while eating. I’d recently taken a first aid course like those on offer at Coast2Coast so I would know what to do if a serious choking episode arises or anything else were to happen. Now, remember, for every time that he needs to have a scope done, he also needs to be put under anesthesia too. I am sad that this is now “normal” for me to witness. I have become conditioned to seeing him lose consciousness under the mask of stinky-sock smelling anesthesia. The procedure for the GI scope is pretty quick, they take pictures and biopsy samples to check the actual Eosinophil count per field -[where the ># comes from]. Jacob’s doctor came back into the room after the procedure just shaking her head, it didn’t look good.
So what now? We are going to re-treat with the Budesonide, it is normally an asthma treatment used with a nebulizer, but for Jacob, we mix 2 ampules with a packet of Splenda, then he drinks it, after which he can’t eat or drink for 30 minutes. The medicine works as an anti-inflammatory coating and treating his throat. We have had luck with this in the past and are hoping for positive results again. We also had to re-do an allergy test yesterday, to look at his current diet. I can not tell you all the many ways I loathe these tests. We never have good results, and always end up with a smaller and smaller list of what Jacob can safely eat. Yesterday was no different. Jacob’s list of “safe” food is officially shorter than the list of what is not safe. We have had to remove a LOT of his favorites, and I am REALLY struggling with figuring out a new diet plan and menu. I also have not figured out how to tell an almost 3-year-old why he can’t have all his favorite foods.
I haven’t had the heart to tell him that Applegate Farms Turkey hot dogs are off the menu because he is now allergic to turkey. No more lemonade because of a Lemon allergy!~ [suspect Oranges too-need to test!]. No more juices, no more juice-boxes, or anything with Apple -because of a new Apple allergy. No more Broccoli!!-My son literally gets super excited buying broccoli at the grocery store. He LOVES it! I haven’t told him that he can’t have home-made french fries, or potato chips anymore because he is now allergic to potato! I haven’t even figured out what the heck I can replace Potato Starch with for baking!~ Did I mention a little boy who has a birthday in 2 weeks, and is EXPECTING a chocolate cake? Oh and of course, he is also now allergic to Coconut! So no more of his safe yogurt, ice cream, and his dietary staple of coconut milk- which he LOVES! I went and bought about 4 brands of rice milk to try with him, which is not going over well. He hates it! It’s like comparing skim milk to creamer! [My friend said “Or like expecting a regular soda and being given a diet!”]. But I am really almost out of options for this boy!
I am leery of Hemp milk, because he has allergies to a ton of other ‘seeds’ like: cottonseed, flax, sunflower, rapeseed, sesame, etc. I am worried about chicken, even though he did test ok with it yesterday, he also is now allergic to turkey [poultry]- so not sure how much longer that can stay on the menu. We do still [shockingly] have shellfish and seafood but again, a top 8 allergen, so potentially a problem? Not to mention he isn’t overly enthusiastic about it. I bought lobsters last night [cheaper than steak or salmon at the moment at only $4.99 lb!] for us, he ate a little bit, but not enough to make a substantial meal.
At this point I think we need to do another allergy test for what remains on the “safe/un-tested” list, to make sure we are not just replacing one allergen food with another. If we can not get his EoE under control with diet restriction and medication, we face having to put Jacob on an “Elemental Diet” ~ which is formula and a feeding tube, either gastric or nasal. As crazy as his diet restrictions make me, I will jump through these hoops to try to avoid having to remove all food and more surgeries. The hardest part of all this, trying to explain to Jacob why he can’t have his favorite foods, and the tears and ‘terrible 3s” tantrums that follow. I guess the only bright shiny spot for now is we still have rice and chicken on the menu! I thank God for that, and that he does not or has not had anaphylactic reactions to these. Oh yes, and dairy/nut-free chocolate is still safe too! 🙂