Tuesday, September 4, 2012

Patch Outcomes

So, I guess I didn't write this, but as I composed my thoughts on Patch Weekend, I was feeling optimistic.  Really optimistic.  Aidan was understandably annoyed at all the crap we taped to him, but he was acting okay and things seemed to be going well.  By Sunday, I actually convinced myself that we'd be passing things.  Okay, laugh all you want.  I (delusionally) thought he'd pass everything.  We'd have a plethora of things okayed for food trials.  Unicorns would be sneezing glitter onto rainbows.  The whole nine yards.

It didn't quite happen that way.

So here are the patches before we removed them.  Nothing sneaking out from under the discs.  No angry redness.  So stop your laughing, because this looked pretty hope-inspiring!

For the record, we tested milk, eggs, wheat, rice, corn, oat, barley, potato, beef, chicken, ham, turkey, green beans, carrots, peaches, and apples.

When I removed the patches, I immediately saw lots of redness (thanks to the adhesive), some stuck-on food (it smelled divine, as I'm sure you can imagine), and one welt.  One, we can handle.  I could see the outlines of the discs used to hold on the foods, but nothing that looked reaction-y other than the one.  It was egg, and it wasn't surprising.  We know from experience that Aidan loves eggs but can't eat them without immediate and severe vomiting.  We've considered them a probable allergen since he was 9 months old.  We even take egg-allergic precautions like having his flu shot done by the allergist instead of the Ped.

No biggie. 

We gave Aidan about half an hour to play while the re-drawn sharpie dried and then checked him out again.  By this time, more welts were popping up.  It's difficult to photograph an itchy, squirmy baby - but I'm a blogger so obviously I had to try.

I never did get fantastic pictures of some of the reactions. Rice and Oat were weaker reactions that were obvious in person but didn't photograph well.  Apple and Carrot look more like discolorations in the pictures than the welts they were in person. 

I actually worried that if we bathed him as instructed, the reactions might go away and no one would believe they'd ever been there.  Ha.  (For what it's worth, it's been over a week now, and egg and wheat are STILL plainly visible).

Monday saw us back to CHOP's Market Street annex to have the patches read.  Again, the outcome didn't photograph all that wonderfully, but the end results were fairly obvious in person.  Weak positives on rice, oats, apples, and carrots.  Positives on milk, wheat, corn, barley, potato, beef, green bean, and peach.  Strong positive on egg.  No reaction to chicken, ham, or turkey!!!

I wish this picture was clearer.  Trust me though.
So those are the results.  Lots of new allergies.  Reminder to carry epi-pens everywhere (because I so need to be reminded, ha!).  And it's time to start thinking about what and when we'll trial.

One final thought.  We've shared these results with a few people and realized that they might be a little confusing.  We've had a lot of reactions that sounded like "That's wonderful! Now he has three foods!"

To be clear - he doesn't.  He has zero foods.  We have three foods that have been approved for trial.  Each trial will happen on its own, over the course of 2-3 months, with a scope and biopsy in between to check for eosinophil counts in his esophagus and colon.  I'm not trying to be a downer, I'm just realistic.  Having three foods would (Will!) be wonderful, but we aren't there yet and don't know when we'll get there.  There are a number of things that go into the decision regarding when to trial - this deserves a post of its own - but please believe that we are just as anxious as you are to get him "safe" foods - safely.

Big huge thanks and hugs to Miss Nikki for coming to CHOP with us, and to Baby Aidan (Our Medical Me doll!) for keeping Aidan brave.  I look forward to sharing some pictures of Baby Aidan's first day with Big Boy Aidan soon!


  1. We had some food protein intolerances with my first and I had to bf top 8 free for 6 months. (it ended up being FPIES as a severe reaction to Zantac) That was incredibly stressful so I can't even imagine this. You seem like a very strong mama though!. I truly feel for you and will keep your little dude in my prayers. xo

  2. oh my goodness! I am so sorry you are faced with another hurdle, but I admire how you take everything in stride. You are an awesome mom! You're family will be in my thoughts!