Monday, March 18, 2013


I talked to Dr. Williams tonight and Nathan's gastric emptying test showed that Nathan's stomach is emptying 37% in 90 minutes. A normal individual's stomach should empty at the rate of 50% in 90 minutes. So yes, he has gastroparesis. :o(

We have tried so hard to avoid medications treating his EoE and have been fairly successful, avoiding his trigger foods and Prevacid has been working well. I guess EleCare would be considered a medicine too, but without it Nathan wouldn't be here, so maybe we aren't avoiding medicines all that great after all, but I am just happy we are able to keep him off of the steroid treatment for now. Giving him a daily steroid just doesn't sit well with me. We made need to go there one day, but Mark and I aren't ready for it just yet. We are still faithful that we can find Nathan foods he can tolerate without it.

Unfortunately, there aren't many options other than taking medicines to treat gastroparesis. So Nathan will begin taking Erythromycin (a low dose antibiotic, grr!) 3 times a day... forever... or until this magically disappears which, at this point I don't know enough about gastroparesis to know if that is even possible.

So, I'm one disappointed momma tonight finding this out. Trying to look on the bright side, and think about the positives, Nathan getting his appetite back, and for his g-tube to stop leaking all over the place! I am thankful for all of the wonderful medical advances in today's world, but it frustrates me to no end that medicine is required to get Nathan's little body to work like it's supposed to. Eating healthy food should make your body function appropriately, but EoE is a crazy thing. :o/

Sunday, March 17, 2013

Scope #5 & Gastric Emptying Study...

Nathan's scope on February 28th went great! Based on Nathan's lack of interest in food over the past several months Dr. Williams was surprised to find his esophagus is such good shape visually. The furrows had healed and there was no inflammation! The highest eosinophil count from his biopsies was 12.... a bit frustrating to me because he's had 0 in the past with the same foods he was eating, but nonetheless it's a low enough count to be considered a pass. (15 is the minimum number were EoE is considered to be uncontrolled) So it's cutting it close, but we're going with it and trialling potatoes again!

We started the potatoes on March 6th and I wish I had gotten a picture or video of Nathan's excitement when I told him I was cooking him potatoes for breakfast that first morning! It's been 12 days since we started them and about 3-4 days ago he started with a runny nose and the dreaded coughing and gagging at night. Mark and I have both been a little under the weather the past week too, so we are going to keep the trial going and just pray it's a cold he has. 

Since Nathan's scope didn't reveal a reason as to why he's not been interested in eating lately along with the fact that his g-tube has been leaking like a faucet when he's hooked up to his pump at night, and the fact that I mentioned that broccoli pieces Nathan had consumed 24 hours prior were still in his stomach when I vented his g-tube one night Dr. Williams wanted to do a Gastric Emptying Study to check on his stomach and how it is emptying.

A zillion years ago, way back before we even knew that EoE even existed, Nathan had an Upper GI Barium Swallow test done to try and figure out the reason for his constant projectile vomiting. The results showed delayed gastric emptying and a pyelorospasm. At the time we were told that it was likely due to a milk allergy, so we stopped the dairy and continued on with the barfing until we discovered it was in fact, EoE. At that time we were so happy to find out what was wrong with Nathan and once we began treating it his symptoms improved we never gave those results another thought, until now.

The Gastric Emptying Test was done last week on March 14th. We are hoping to get the results tomorrow... the wait is about to make us crazy! So I'll be sure to update once we know what they are and what the plan is. I don't want him to have another diagnosis alongside his EoE, but gastroparesis would certainly explain why he's not hungry at mealtimes. For now, we'll practice our patience and wait and see what Dr. Williams says.

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."
Philippians 4:6

In recovery after his scope on February 28, 2013

This boy can do anything with Mickey and Gigi by his side!

Brave, Nathan laid perfectly still like this for 90 minutes!

Not the greatest picture of the first image, but you can get the idea of what his tummy looked like at the beginning and towards the end of the test.