We got the results back on the scopes and biopsies that were performed on Jonathan a couple of weeks ago. Both his GI doctor and a second opinion agreed that he has some sort of chronic inflammation of his GI system. This could either be due to a disease or allergy, or both.
Dr Waasdorp was able to send a scope the entire length of his digestive system. From the mouth she was able to see all the way down through his small intestine and coming from the other direction, all the way up his large intestine. She noticed that he had red areas of inflammation pretty much all over, but more noticeable in his duodenum (beginning of the small intestine) and all throughout his colon. She also observed that his duodenum was lacking some ridges or texture and that the villi were shorter. Right after the procedures she was able to tell us what she saw, but that to really know she needed to look at the biopsies under a microscope.
The following week we heard back on the biopsies and she believed it to be an eosinophilic condition of some kind. She didn't see anything that looked like Crohn's and was hesitant to call it an "itis", but definitely discovered something. A diagnosis with this sort of thing doesn't seem to be made upfront, because it's rare and not well understood. It also could be simply related to him ingesting food, medicine, or other substances that he's allergic to. There is a difference between having a disease and being allergic to something in that you can control one a lot more than the other simply by removing the problem.
We don't know much at this point, which is why we've been referred to a team of doctors at Children's Hospital in Denver for next steps. As I mentioned above, it could be a variety of things, causes, and ways to approach this. Although we don't have the full picture yet, an eosinophilic issue seems like a very good explanation for everything we've experienced with Jonathan based on the symptoms we've read about. Poor nurser, poor growth, vomiting, feeding issues, could all be related to this problem. Motility (how fast or slow his stomach empties) is also a complication of this problem.
Yesterday we started him on Prednisone, a corticosteroid drug. This drug can have some bad side effects, so we're watching him closely. It does a good job of calming allergic reactions by suppressing the immune system, but it also effects his adrenaline production and open him up to infections. We're watching his behavior for signs of problems as well, since this can also cause some people to become over emotional, just want every parent wants in a three year old boy. I'm hopeful that the medicine will help. He's asking for food again, which is obviously a good sign.
In some ways we're very glad that we finally have a lead. Instead of me trying to explain what this immune system/white blood cell reaction and inflammation is, I'll instead give you guys a link and a description to help describe the kind of thing we believe we're dealing with. Over the next several months we'll probably find out more a more what is causing this, what it really is, and how we can move forward.
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What Is an Eosinophilic Disorder?
Eosinophilic enteropathy is a complicated digestive system disorder in which eosinophils, a type of white blood cell, are found in above-normal amounts in one or more specific places in the digestive system and/or the blood.
When the body wants to attack a substance, such as an allergy-triggering food or airborne allergen, eosinophils respond by moving into the area and releasing a variety of toxins. However, when the body produces too many eosinophils, they can cause chronic inflammation, resulting in tissue damage.
These rare diseases are diagnosed according to where the elevated levels of eosinophils are found:
Eosinophilic esophagitis (esophagus)
Eosinophilic gastritis (stomach)
Eosinophilic enteritis (small intestine)
Eosinophilic colitis (large intestine)
Hypereosinophilic syndrome (blood and any organ)
This condition can be divided into two types, Primary and Secondary. The Primary type is further subdivided into allergic and non-allergic forms. The allergic type occurs in association with food allergies, while the non-allergic form occurs when no obvious cause can be found to explain the high number of eosinophils in the digestive system. Because of this, the non-allergic form is thought to be evidence that the body is attacking itself and considered to be an autoimmune disorder.
http://www.njpaeos.org/egid.html