Skip over this part if you already know about EGDs and FlexSigs. Quick medical lesson for those unfamiliar with the process: EGD is short for Esophagogastroduodenoscopy. [Translation: they put a tube down the esophagus, through the stomach, ending at the beginning part of small intestine. Along the way biopsies are taken. The biopsies are then viewed under a microscope to check for eosinophils. A normal biopsy should have, at very most, 15 eosinophils per high powered field.] FlexSig is short for flexible sigmoidoscopy. It's, as Mister C would put it, a "violation from the other end" to get colon biopsies.
Tyler and I checked into Phoenix Children's Hospital (PCH) and put on his purple gown. We waited and waited. We had a pre-op consult with Dr. McOmber and the anesthesiologist. We walked to the GI procedure room, I gave Mr. TyTy a kiss, then I was asked to go to the waiting room. I was a bit taken back cause in the pre-op consult the anesthesiologist he said I could be there until Tyler fell asleep. Instead the anesthesiologist decided to pry Tyler from my arms, Tyler screamed like only the youngest of 5 children can scream, and he said, "You can leave now, the door's over there."
The unpersonable anesthesiologist would soon become the least of my worries.
I waited in the waiting room about 30 minutes before they were done. Doctor M came out carrying a few sheets of paper with pictures on them. He showed me the pictures.
1st scope, March '11
Me: "Ooooo.... I'm not a doctor but that doesn't look very good." (Not knowing what swollen body part was photographed.)
Dr. M: "Well the good news is I'm 99.99% sure we're not dealing with celiac. The bad news is this picture. This is Tyler's esophagus. See the lines and the furrows in the first picture? Those shouldn't be there."
{Instead awkward pause from me. I hadn't read up on "esophageal furrows" prior to the procedure. I'm feeling kinda stupid, err, uneducated at this point.}
Long story short, there was certain for Eosinophilic Esophagitis but we had to wait for biopsy results for true diagnosis. Tyler woke up screaming before he was wheeled into the recovery room. We waited 45 minutes to ensure he could tolerate fluids. Tyler and I left the hospital, me a bit perplexed but ready for this allergy thing. Mister C and I could totally handle a kid with a few allergies. We just make sure we don't feed him shellfish, egg, or peanuts right?
HA! Boy was I was naive.
Test results came back the following week. Tyler had 57 eosinophils per hpf (supposed to be lower than 15) in his esophagus and some present in his colon. Tyler's body "sees" food as an infection and sends white blood cells to attack his esophagus and colon.
Add allergist to Tyler's list of doctors.
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We were referred to an allergist, Dr. Shimamoto, and Tyler started an elimination diet. We started by eliminating the top allergens in hopes Tyler's appetite would increase. An increased appetite is usually a good sign that reactions are under control. Tyler's appetite decreased. We began an elemental diet. The only thing he was allowed to eat/drink was an uber expensive hypoallergenic formula you can't buy at regular stores. (Expensive = $50 for a 14.1 oz can of powder formula. One can lasts about a day and a half.)
His appetite continued to decrease. I took him for frequent weight checks. He would gain a few ounces, lose some, gain a little more. It was a vicious cycle both physically and mentally. Enough was enough and they finally placed an NG tube.
The NG tube was a temporary fix. 4 weeks later the NG tube was replaced with a g-tube and they scoped him at the same time. This would be an elemental diet baseline reading.
2nd scope, June '11
A nice, smooth esophagus. :) Good job, Tyler! They took 3 biopsies at different locations in his esophagus. His eosinophil counts were 1, 6, and 1. (I blame it on a chip his 3 year old brother gave him. "But Mom, Baby TyTy liked it.")
We began introducing foods again. We started with green beans. We added applesauce. We added pears. When I say "we added" I mean we would give him the little bit he wanted to eat. A good day would consist of 2 baby spoon bites, 2x a day. Nowhere close to what a healthy toddler 14 month old would want but for Tyler it was good. We introduced sweet potatoes. Peeling, slicing, and baking sweet potato chips. He'd eat one, we'd get excited.
Then came the next scope.
3rd scope, July '11
Doh! One step forward, two steps back. We'll get the results on Monday.
