Tuesday, August 20, 2013

Scopes: Russell

Oh, Russell.  Russell, Russell.  Where to begin?

First off, Russ doesn't have any more inflammation in his digestive system any more, like he did during his first scope.  So that's our one good result.
Drugged and happy and ready to go into the OR.

Second, let me educate you further regarding EGIDs.  You see, they're rare.  The lower you get in the digestive system, the more rare they are.  EGIDs are most common in the esophagus, and there have been a good handful of studies done and some medications developed to help treat Eosinophilic Esophagitis (EoE).  But in the stomach, duodenum, and colon, there is a sore lack of research.  In fact, there technically is no diagnostic criteria for lower EGIDs.  So, although our GI doctor says that it takes a minimum of 40 eosinophils per high power field to diagnose someone with Eosinophilic Duodenitis (ED, what Caleb has), another doctor could go by a completely different number.  How ridiculous is that?!  Part of that is because the "healthy" number of eosinophils in a person's digestive system varies based on where in the country you live.  Weird, I know.  As if it wasn't complicated enough!  After some recent research of my own (aka, asking around to find out what people who have been to the APFED conferences have learned from some of the top experts in the world), I found some numbers that I feel comfortable believing.  There are many reasons why I love our GI specialist, but her knowledge of EGIDs is not one of them.  So, according to more knowledgeable specialists, in order to be diagnosed with an EGID, you must have an eosinophil count equal to or greater than the following:

Esophagus: 0
Stomach: 10
Duodenum: 20
Large Intestine: 10-20

According to that, Russell would have been diagnosed with Eosinophilic Colitis (EC) from his first scope when he was 11 months old (38 eos/hpf in his colon), and diagnosed with ED from his scope last month.  He had 30 eosinophils in his duodenum this time.

Russ is bloated at the end of every day.  His shirts pop up, just like that chubby mouse on Cinderella.  That cannot feel good.  :(

He also had some "mild focal villus blunting" in his duodenum this time.  Last time he had "patchy villus blunting."  These, along with his extreme bloating, give me reason to believe that we're not out of the woods yet concerning Celiac Disease.  If Russell ends up having to go off of wheat/gluten, I'm going to regret trialing wheat with Caleb.  But it was the most logical next step for Caleb's diet, so we had to go ahead with it since Russell technically doesn't have a diagnosis.

There are many times where Russ will specifically avoid the foods that Caleb has to avoid, and I can't help but think that it's because they cause him pain and he knows it.  So we just try to offer him a variety of foods and trust that he's "healthy" enough to eat what he needs to grow and develop.  But at 20 months old, the poor kid is barely over 20 pounds.  He still won't drink milk of any sort--just a dairy-based toddler formula and a hypoallergenic formula.  I'd like to get him to drink rice milk or coconut milk, but it's hard trying to take away his formula when he hardly drinks enough of it as it is.  His diapers aren't very wet these days.

However, our GI doctor still believes that he doesn't have anything.  She hasn't diagnosed him with ED or Celiac.  So that's good and bad.

Although, it's easy to see that Russell is healthier than Caleb ever was.  A feeding tube has never crossed my mind for him.  Nate and I feel like we should be fine not limiting Russell's diet for the time being, especially since most of the time we all eat the same as Caleb.  If at some point Russell's health really goes downhill, we will know to scope him again because it wouldn't be surprising if he ended up with a technical EGID diagnosis some day, although we know now that he pretty much has it.  Until then, ignorance is bliss, right?

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