It's been a while since I've posted (or responded to comments!), and I apologize. Life has been a little crazy...
Let's see. I think I mentioned in the last post that DD seemed to have a minor reaction to the anesthesia. Well, it turned out not to be so minor. She was "off" for a couple weeks- just not herself- very hyper, stimmy, couldn't focus, bad sleep, etc. And suddenly, she started reacting to previously safe foods. Within 2 months after the scope, we lost more foods than we had in the entire previous year. :( Her body was so hyper-reactive that everything caused an immune reaction. So at this point, she's down to eating lamb and carrots, and even those are on the fence.
I reviewed the pathology reports again from her scopes, and it looks like she actually didn't have eosinophils in her stomach (although I'm positive that the GI doc told us that she did), and I'm no longer convinced of her diagnosis of eosinophilic colitis either, since it appears that they didn't do any eosinophil counts in her colon. So right now, we're definite about the EE diagnosis, and nothing else. I'll have to follow up with the doc to clarify, but at the moment I'm less than impressed with the results from this $13K+ procedure.
Last month, we found a new allergist that does patch testing (will post more about that next) and works with EGID kids. The results showed positives to many of the foods that we had recently lost (zucchini, broccoli), and some others that we weren't sure about (mushrooms, beets, olives, kohlrabi, honey.) :( We also did some skin testing for environmental stuff, and got positives to all the trees and grasses, as well as dust.
We've decided to start trialing medical food (elemental formula) for DD since she's so close to losing all real foods, and I want to do everything possible to keep her off steroids. I keep getting statistics thrown at me that 99.whatever% of kids tolerate these elemental formulas, even though they all have her allergens in their ingredient list (most are made from corn syrup solids.) I haven't been convinced, and going through these trials has proved even further than the rules just don't apply to DD. We started with Neocate Jr. unflavored, then Neocate Jr. flavored, then Elecare unflavored. All were massive fails almost immediately. Symptoms included: diarrhea, a rash, waking up at night repeatedly (sometimes every hour) screaming in pain, joint pain, potty accidents (which she ONLY has during certain food reactions... don't ask me why), and behavioral issues (overly sensitive, aggressive, etc.) This past week, we've been trialing Neocate E028 Splash, grape flavor, which is one of the few that don't have corn syrup solids but does have many other allergens. This trial has gone much better than the rest. After 5 days, we saw no sleep or behavior issues (a little hyperactivity, but that's probably to be expected because this one has artificial flavors and sweeteners), no potty accidents, no diarrhea, nothing. Except.... a rash. :( We're going to take a couple days off the formula and see if it goes away, then try it again and watch for new/more obvious symptoms. Usually with a food trial that isn't an obvious pass or fail, when we remove the food for a few days and trial again, the symptoms will be much more obvious. I'm hoping that's the case here as well, although I'm already pretty sure this formula is going to be a fail as well. Which is disappointing to say the least, because she really liked it and asked for it constantly, and by the end of the trial she was definitely preferring it to real food, which is something I thought might happen- once she found a food substitute, that she would stop eating the foods that were bothering her. For a 3 year old, she's amazing at listening to her body and what it needs.
So that's what has been going on around here. I'm now about 9 months pregnant and trying to get ready for a new baby in the house.
For anyone who's curious, here is her updated allergen list:
- IgE to dairy (cow/goat), soy, eggs, fish/shellfish, peanuts/tree nuts, beef, chicken, pork, legumes, seeds, corn, wheat, rice, barley, buckwheat, oats, rye, green pea, green bean, white potato, sweet potato, banana, cherry, grape, raspberry, strawberry, asparagus, cabbage, rutabaga, brussel sprouts, chocolate....
- APT (patch testing) positive to broccoli, carrot, honey, kohlrabi, zucchini, mushroom, beet.
- EA (environmental allergies): dust, trees, grasses.