Friday, August 3, 2012

Quick Update and Next Steps

A lot of you have been wondering what's happening right now with Aidan.  We have a few things scheduled, but for the most part, we're just working on figuring out how to do this thing called everyday life.

I've felt a little (a lot) too overwhelmed to blog lately.  I know, barely noticeable, right?  Not having a job has taken an emotional toll, and my time has been a little torn between being with my boy and finding the right professional fit.  I do want to go back to work, but I need to make careful choices for the right fit.

Anyway, coming up next for Aidan...

Patch Testing - Later this month, Aidan and I will go down to CHOP's EGID clinic to see one of the allergists for Patch Testing.  Patch Testing consists of placing small amounts of the suspected allergens on the skin and leaving them there over the weekend, to be read 48 hours later.  I have mixed feelings about this - I'm not sure what substances we're testing or what this will tell us about his EGID.  To some extent, I feel that this is a little bit pointless.  But most of me, most of the time, feels like more information can only help.  Even if this tells us nothing about his disorder and how it's presenting, we'll have more pieces of his allergy puzzle.  The hope is that this will guide us as we re-introduce foods in the coming months and years.

Surgery - This is (should be) a very minor one.  Aidan's feeding tube is currently a PEG and will need to be switched out for a Mini-One Button.  This requires day surgery down at CHOP in early September.  The thought of going back for another surgery makes me a little nauseous, but we're looking forward to getting rid of this PEG.

Once those things are done, I don't think we'll be messing with him any further this year.  He goes back to the GI in October, at which time we'll start discussing his next food trial, assuming his weight is still good and all else is going well with the G-Tube.

It feels good to be back to the blog.  I still struggle with feeling like I have nothing to say worth reading - but you've all given us so much love and support, the least I can do is let you know how Aidan's doing :)


  1. I love reading about that sweet boy of yours!

  2. Hey there! Hope you are well. Just figured I would share our patch testing story with you. So Sam has had allergy testing a million and two times. Blood, rast etc. Well probably 3-4 times prior to this year. And always negative. This year he had blood (all negative), RAST (all negative) and then patch testing at Children's here in Boston. His patch testing came up with mild positives for rice rye barley and eggs. And just for good measure they said to take out dairy with those foods to see if that made a difference in symptoms. Then they rescoped him after 8wks, and he was clean. Then they said that he could pick one thing from that list of things to trial back in his diet. He picked eggs. And it WAS AWFUL! I think this last bought of colitis was by far the worst we have ever dealt with. So even though blood and RAST were negative for eggs, and that sometimes the patch testing can be incorrect, we learned about a definite cause of his E. colitis. Praying for a big answer for you too!!!