It’s Check-up Time Again

by Hope Sewell on February 21, 2013

in allergies, eos, family, kids

We made one of our regular treks to Birmingham this week for GI check-ups.

It’s been a while since I’ve posted anything health related.  You can read about the allergic inflammatory disease, called Eosinophilic Esophagitis or EoE or EE or Eos, that both Tobin and Lilly have HERE.

You can also watch this 3 minute cartoon that CLEARLY (although not comprehensive) explains what is going on inside the esophagus of an EoE patient.  Please watch it.  Eosinophilic Esophagitis is much more than “just a food allergy”.  It’s a rare allergic inflammatory disease that is effecting more and more adults and children and we need a cure!!

Gus and Phil

Tobin and Lilly go for check-ups anywhere from 2 times to 4 times (or more) a year, depending on what’s going on with them.  They LOVE taking these day trips.  It’s fun to just get away.  

They pack up all kinds of toys and fun stuff days before.

I always pack an organizing utility tote with busy bags and fun stuff for us to do while we are waiting in the exam room.

Although we sampled a little bit of everything in the bag, the bubbles were the biggest hit!!

Bubble Blowin’ Fun

The bottom line for this appointment is that Lilly is well managed overall.  There are a few things that make me think she needs another scope just to make sure the eosinophols are not congregating in her esophagus.  She’ll be re-evaluated in about 3 weeks.

Tobin is a little different.
About 2 years ago, we reintroduced wheat into his diet.  It had been removed since he was 18 months of age.  After multiple allergy testing in the fall of 2010, our doctors decided that we could try adding it back and just see how things go.  After approximately 30 days he was scoped again and got a great report.  So we rocked on with cookies, and bread.  Then we also added in eggs.  This opened up the world of Cracker Barrel pancakes and MORE “outside of the home” options for eating and fun.

After several months I started noticing that he was getting full quickly…eating small amounts at a time of his most favorite things.  And really I don’t know that there were any other symptoms at that time other than I just had a “gut feeling” that something wasn’t right.
We scoped again in September of 2012 and found an esophagus FULL of eosinophils (in numbers greater than 100 per high power field) as well as inflamed and thickened.  A normal esophagus has no eosinophils by the way.  This was so disappointing because he was greatly enjoying the bit of culinary freedom that he’d been given.  So after we all shed some tears we just picked right back up with our original diet.

In the weeks to follow, he told me that he was spontaneously “throwing up in his mouth and swallowing it”.  Sorry for the graphic description  :) But he was having some major reflux as well.

So, we’ve increased and changed up some meds.  Now he’s having some other reactions/issues and we aren’t sure at all what is causing it.  It’s hard, frustrating and disappointing but I’m confident we will get him back under control and well managed.
He’ll be re-evaluated as well in about 3 weeks with a GI and allergist together.

Overall it was a fair appointment and I’m looking forward to getting some fresh faces involved as well as some answers and a game plan.

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