The earth is full of the goodness of the Lord!

Psalm 33:5

Eosinophilic infiltration
Photo Credit:
Kids with Food Allergies
Foundation

 Neal, Celia, and Damien have Eosinophilic Gastrointestinal Disorders.   In an EGID, the body's immune system turns on itself. Eosinophils are a particular type of white blood cell, and usually they attack things like bacteria and parasites.  In EGIDs, the "eos" go crazy, think food protein is an invader, and trigger the body to fight it off.  Except it's not a *harmful* invader, and they don't see that.  So many eos infiltrate that they cause damage to the GI tract.   Celia has issues with her entire GI tract, while Neal and Damien only have affected esophagi.  There are two ways to stop the eosinophils from attacking.  One is steroid medication, which calms the immune system. However, it only works for about 50-75% of patients.  Neal uses a steroid administered via an asthma-type inhaler; instead of breathing it into his lungs, he swallows the medication so it can coat his esophagus. However, it is not quite enough to calm his body, and he also must avoid several foods.  Celia and Damien had such extensive damage as infants - while they were eating very few foods already - that swallowed steroids were clearly not going to be sufficient.  In fact, Damien was still exclusively breastfed when he was diagnosed -- he was reacting to food proteins that my body was passing through into the milk.  Instead, they were prescribed an elemental diet. What they can't manage to drink is pumped directly into their stomachs via a feeding tube.  Because they require such a high volume of liquid (Celia needs to consume almost 2 liters daily; Damien needs just over 1 liter of formula each day),  tube feeds are crucial for getting enough calories and nutrition.  In order to eventually leave behind this type of feeding, we need to trial foods, one at a time.  Often we know within days if a food will not be tolerated. Symptoms of food rejection range from bleeding stomachs (we often find blood in Celia's tube line with foods she is allergic to) to vomiting to acute joint pain  - all signs of the inflammatory response. In order to "conditionally pass" a food, they need to eat a full serving daily, with no allergic symptoms, for three full weeks.  Final verdict is rendered after they have endoscopies, where biopsies are taken of their gut to make sure there are no abnormal levels of eosinophils present when looked at under a microscope.  Eight years after diagnosis, Celia has two foods that have survived this process: pork and strawberries.  Damien has had more success with food trials, and tolerates three foods: pork, apples, and potatoes.

About a month ago, we decided to trial strawberries with Damien.   While it meant starting with berries that were out of season, if he passed them we would know in time for the local strawberry season to begin.  If they were OK, we could get lots of berries and put them up for when grocery store berries aren't available.   It also would mean he and Celia would have two foods in common -- which would make cooking "common-safe" foods a little simpler.  So far, he seems to be tolerating them well, and he loves them.  This week, local farms started picking strawberries, and on Friday, we stopped at a local farm market to get some.  When we got home, we had a picnic snack and Damien had his first Jersey strawberries. 

I put them down, and he scrambled over to where I was sitting.  

He asked, "Strawberries for ME??  My favorite!" 

 His very first taste.

 "MMMMMMM!!!"

 "Strawberries yummy, Mommy!"

I'm starting to get excited.  If we can make it about four more days with no problems, we can call strawberries a conditional pass.  After he has three conditional passes, his gastroenterologist will schedule an endoscopy for a final check.  (We wait until we have a few foods - it's a calculated risk, because if the scope is bad, it means we have to pull all three foods and try them again, but since scopes involve anesthesia, we also want to try to minimize how many times he needs to be put under.) 

For now, though, I'll share his exuberance, celebrate the first harvest of the year, and proclaim,

 "The earth is full of the goodness of the Lord!"

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