Tuesday, February 19, 2013

A Long Overdue Update

Oliver has been corn-free for nearly ten months now. All the things I mentioned previously (sleeping better and eating better) are still happening, so although it's hard I am happy to have him off of corn! He has done really well with it, overall. We went all out and pulled all corn syrup and corn derivatives. Those things don't typically cause EoE reactions (because they supposedly have no proteins), yet it's not unheard of for a kid to not be able to tolerate them. We have kept dum-dums lollipops in his diet. They do have corn syrup, but are safe for a vast majority of EoE kids, even those with no other safe foods.

With regards to corn syrup, we had often wondered if he was reacting to ketchup. It's very likely seeing as every ketchup you'll ever find at a restaurant has corn syrup. Or it could have been the hot dog he always ate with the ketchup, who knows. But as we struggled to find a ketchup that would work (Hunt's unfortuntaly doesn't sell theirs anymore, but Kroger and Albertson's both have an organic store brand one), I recalled those times when I was wondering if the ketchup he was eating was making him sick.

From that point, we did something we maybe shouldn't have. We added a new food AND removed one food without checking things out via endoscopy in between. This means that should his next endoscopy show eosinophils, we won't know if the soy is a no go or perhaps the soy is safe and there is something else that he was eating all along that was the problem. Had we done the endoscopy after just removing corn, we would have known if he was "clear". Instead, we didn't go that route and just assumed that removing corn was going to give him clear (no eosinophils) biopsies from the endoscopy. Honestly, I thought that soy was going to be a huge fail and we'd no right away that it wasn't going to work, which was the main reason I agreed to the soy trial (it's what the doctors thought should be the next step). But, that didn't happen. He's been doing very well with the soy, actually. That doesn't mean things still don't look bad inside though! There's also the question of if he even knows what it's like to eat without pain, or if he's so used to stomach pain that it doesn't bother him anymore. Perhaps if you or I were feeling how he was we'd be visibly irritable to all around us, but Oliver may just be so used to it that it doesn't phase him. Who knows. Even if he is experiencing no pain, the eosinophils could still be wrecking havoc on his esophagus.

We will definitely be doing another endoscopy very soon. It's time to add another food, but we need to know for sure that it's okay to do so.


2 comments:

  1. Love to read all of your updates even though I don't comment. And it really had been a while on an Oliver update! Love you guys!

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  2. My name is Abby, I have a 5 year old girl who just is in the process of being diagnosed. She has terrible furrowing in her esophagus and we are awaiting biopsies. The thought of this being confirmed fills me with both fear and relief as we have had issues with her since she was born and had to spend $45 a can on elemental formula (elecare) when she was an infant. I am so glad I found your site! It gives me hope :) Thank you.

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