We drove through some very nasty weather to Em’s allergy appointment on Friday – we were crawling along at 10 mph on the interstate much of the time and there were cars spinning out around us, but we made it just on time.
It was an important visit – following up after the endoscopy and figuring out where we need to go from here, so I really didn’t want to have to reschedule and wait a few more weeks to discuss the endoscopy.
Unfortunately, Dr. A did not have the endoscopy report to be able to look at. So, we were sort of left in limbo. However, the fact that I reported that Dr. Croffie found nothing, other than the low lactase level, was taken on board. For now, until he gets the reports from Croffie’s office, he is assuming there is no eosinophilic esophagitis. He wants to see both the written report and the pathology report – if he is in doubt, he will get the slides read at Cincinnati. But, until something changes, he is assuming it is not EoE.
Which leads us to the ‘fortunately’ part… If it is not EoE, what is it? I did not want to pipe up and just shout out my lowly little opinion but I was determined to somehow get mast cell on the table. So, we just tried to answer his questions honestly and as thoroughly as possible.
When he focused on the flushing, Em pointed out that the flushing itself is not bothersome, it is the tachycardia, syncope, and nausea that goes along whenever she flushes. That got a moment of thoughtful silence.
When I mentioned that the lactose intolerance was the least of her problems, he asked what her biggest problem is… I said, probably the reactions to food that she has, oh and sometimes it isn’t just food, it is weird reactions to environmental triggers too. Another moment of thoughtfulness. He finally asked which foods are problems. We gave him the list of foods that are problematic, most of which happen to be high histamine foods. He actually said the ‘h’ word when we talked about canned tuna being a problem.
Right about then, I knew he was following our trail of crumbs and we were finally heading the same place. When he talked about tryptase levels and that doing the tests over would probably still end up with a negative result, I knew he was thinking mast cell. He never actually said mast cell, but clearly is thinking along those lines. We all agreed to discontinue the Singulair, since it isn’t helping in any noticable way.
Basically, he left it that he was going to have to take some time to think about which direction he wants to go, to decide what meds he can try that might help. So, I am to call Dr. Croffie about the reports and then later this week give Abonia a call to find out what he has decided.
So, we actually accomplished little and yet, I feel like we got more done than ever before. And I feel like we may be getting somewhere. Finally.