Carter underwent another round of patch testing this week to foods he had failed a year ago. Here are the results:
Passed via prick and patch (this year--had failed last year)
Failed via patch (passed prick this year--but had failed patch last year & this year)
So, what does this mean?
Since he failed these before, we can't just incorporate them right away. It will have to follow suit with the other foods he recently re-passed (pork, corn, beef, green beans). He will have to trial each one for three weeks at a time (and then take at least a three day break before starting another one). He'll also have to have blood work done before and after each food to see if his blood eosinophil count goes higher.
We just finished our first three week trial, and we did pork. We've had pork chops and plenty of bacon. (We told him the pork chops were "chicken".) Unfortunately, we never got around to ham. I didn't dare try lunch meat, since there's a large chance of cross contamination with cheese (usually cut on the same cutter) and I never felt like cooking an entire ham.
It's so frustrating because we really aren't sure if it's a pass or not!
Since he handles pain so well--it's incredibly hard to tell if he's not feeling well. Most EOE patients will have a scope and biopsies of their esophagus after a food trial. We're hoping to not be that invasive, because his prick and patch tests have been accurate so far. But, where he had failed these before--we're kind of in new, unchartered water. So, what do we believe? Do we believe that he just received a false positive last year? Do we go by last year's fail? Or, this year's pass? Do we think his system has gotten better? I was really hoping for something clear cut, but it's been difficult to tell.
For the first while, it seemed everything was fine. He wasn't eating it every day like he should--the texture of the bacon I think got to him. But, I cooked everything in the leftover bacon grease (which is still seen as controversial because some people claim it has to be protein and not just the fat). I figured either way it was good calories.
Just these last few days he's been waking up early, not wanting to eat very much and being cranky. Does that mean pork is a fail? Who knows??!! Even his doctor isn't sure. Is he just being a typical two year old? Is he getting his molars? Is it his seasonal allergies? Arg. It could be any of the above. I hate to just pull pork from his diet because of some vague symptoms--but I hate to keep feeding it to him. I guess we could have him scoped, but I don't feel good about that either. EOE is often a delayed reaction disease, where the damage will gradually build up in the esophagus, so I don't want to be damaging it when we had finally healed it. We did take the after blood work today, so we'll see what that says. I'm still not expecting clear cut results because his blood eosinophil count is not considered as definitive as esophagus biopsies and blood eosinophils can go high for multiple reasons--like seasonal allergies and it's been horrible pollen levels this week.
We've been praying to know what to do and how to move forward. We're hoping the blood work we get back on Tuesday will give us some indication. I think if it's still unclear we might just keep it in his diet here and there until he's old enough to tell us how it makes him feel.
I always think to myself, just let him pass one! I'm really hoping that banana will be the one from this week's group--although salmon would be such a fabulous protein.
On other big news, one big decision that we made is that we're done testing more foods via prick and patch.
The prick tests hurt him--because they're literally breaking the skin. And, the patch tests just rip his back up when we have to pull the tape off. I have to take the tape off, myself--at home, and it's torture for both Carter and I. He's BAWLING, begging me to stop and it literally takes all of my strength to pin him down and take them off. It's misery. I dread it and no matter if I promise treats, turn on movies...etc...there is no helping it because it's painful, and you can't blame him. Perhaps it's because I'm pregnant, but I had just had enough this week. We've done over 150 tests--and many foods have been tested at least twice. We've been thorough and I think this is a good stopping place.
He honestly used to not mind the tests much, but as he's gotten older he's getting sick of them and I cannot blame him. He's been such a trooper and has endured sooo much, to still have a restricted diet. I'm grateful we've done it and that he's been a trooper throughout it all. But, I feel peace taking a break. Someday, if he wants to try a new food, it will be his decision, not mine. I feel like I'm torturing him at this point to try one off foods like egg plant and mango and other non-essentials. It's not worth it for either of us.
We'll still have plenty of tests--we have to do three week trials on all of the foods mentioned above--so this will last us awhile, but we're not trying any more new ones. It will take just months to get through these--and that's if we keep up with it after the baby comes.
I'm hoping for positive, definitive results from the upcoming oral/eating food challenges. But, I'm trying to be realistic that they could still fail, and I feel like I'm in a good place where we're used to his diet...so anything would be a welcomed addition, but we're not dying to have it either. I'll keep you posted!