It’s been a little while since I’ve last updated everyone on the most recent tests we’ve had done on Jonathan. I’ve been saving up all our notes and talks with the doctors until the final test on the blood work came back. Both of the tests looked at Jonathan’s antibodies in his bloodstream (serology), the genetic makeup of his DNA, specifically whether or not he has the required DNA markers or mutations to be susceptible to an inflammatory bowel disease (IBD), inflammation, and the likelihood of developing a disease over time. The two types of IBD that he could have are colitis and Crohn’s. Crohn’s affects the small intestine. We are still scheduled this week for allergy testing in Denver, but due to these results the doctors think we are more likely dealing with issues related to IBD, not just an eosinophilic allergy issue.
The first test came back and showed that he has a required mutation in his DNA for Crohn’s Disease. Like some other immune system related diseases, you have to have certain DNA markers to even be susceptible. This doesn’t mean he has the disease, only that he is a candidate. The hope was that if he didn’t possess the required DNA markers for IBD, we could write it off as a possible issue for good. Unfortunately, he does. He also had five of the nine serology test come back abnormal. The overall summary from this test is that he has patterns consistent with Crohn's.
The blood work was then sent for another test to determine the likelihood, based strictly on his serology and genetic results compared to a regression curve, of developing Crohn’s throughout his life. Based on Jonathan’s specific test results compared to the regression curve, he has a 36% chance by age five, a 43% chance by age 10, a 59% chance by age 20, and a 73% chance by age 30 of developing the disease.
The doctors would like to start treating him as if he has Crohn’s since it's more likely we're dealing with this than eosinophilic issues. Due to the side-effects of medication and that we don’t know much yet (and because he doesn’t actually have Crohn’s), we are going to wait a few weeks until we can get through the allergy testing. I always like to take these things one step at a time, otherwise it’s hard to tell what is really going on. Hypothetically, we could find some answers on the allergy side that will improve his eating habits. Diet is also key managing a disease like Crohn’s too, so we still may make some good progress on that front. After we work through the allergy appointments the plan is to meet with some IBD specialists in Denver.
Having something wrong in his small intestines, whether it be from “pre-Crohn’s” like symptoms and/or eosinophilic allergies would explain a lot. In the past it seems like he’s had bouts that are like flare ups, as well as an explanation for his vomiting, slow growth, and aversion to food. Looking at it from a positive angle, Jonathan really seems poised to make some significant progress over the next several months. We know he is capable of eating food when he wants to. As long as he’s feeling OK and is hungry (i.e. we haven’t fed him what he needs via his tube) he eats. These two things may remove what’s been causing him to not eat, accelerating the end of our g-tube days.