Yesterday was Silas’ appointment with the GI doctor. If you’ve been reading, you may recall that this is our second GI doctor. We swapped from #1 to #2 (they’re actually in the same practice) when Silas was admitted to the hospital and I realized that #1 had been wrong about SO many things and really messed us up at times.
With Dr. Weinstein pretty much ruling out Silas’ problems being metabolic and suggesting that the answer lies somewhere within Silas’ digestive system, that leaves allergic-type disorders of the digestive system at the top of the list. We know that every biopsy they took in Silas’ colon showed inflammation. However, #2 has always said that he does not believe Silas has Crohn’s. Early on (about four years ago) I had asked #1 about it being en eosinophilic disorder (too many eosinophils somewhere in the digestive tract). He told me that wasn’t it. Before Silas’ second endoscopy and first colonoscopy (nearly three years ago), I asked #2 if they would check for mast cells. He said they would. After the procedure, I asked if they had checked for the mast cells. He told me they had. Last year, I was looking into mastocytosis again, and I called the GI office to double check and make sure they had checked for the mast cells. The nurse assured me that they had.
That leads us to yesterday’s appointment. I asked #2 if he could look back and tell the number of eosinophils and mast cells they counted in the biopsies taken during the earlier procedures. SURPRISE, SURPRISE… NEITHER of them had EVER been counted! Even though they had told me they were – FOUR different times. I might be really angry right now if I hadn’t become so used to doctors who don’t really know what they’re talking about.
So, #2 is having the biopsies from both endoscopies and the colonoscopy reread and the mast cells and eosinophils counted. I’m not sure how long this will take because he said the lab will not consider this a priority.
If there are too many of either of these cells, we could have our answer. If there are not too many cells in the biopsies, that doesn’t rule out either disorder because Silas was on elemental formula when all of them were taken. If the counts are normal, we will be doing a food challenge for about a month in June so we can do new scopes in July. We will do this during the summer while he’s not in school because the effects of him needing to eat foods that bother him for the scopes will most likely be pretty bad.
Our prayer right now is that they will be able to find the answers we need by rereading the previous slides. Otherwise, we are in for a rough summer.
“Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the Lord; I will take joy in the God of my salvation. God, the Lord, is my strength; he makes my feet like the deer’s; he makes me tread on my high places.” Habakkuk 3:17-19
“If it seems slow, wait for it; it will surely come; it will not delay.” Habakkuk 2:3b