We got the biopsy results back on Friday. No change. The silver lining is that Henry gets to eat again, at least for a few months, while we try the swallowed steroid. Even though we knew there was a good possibility that the diet wouldn’t find anything, we are still surprised and disappointed. I honestly thought there would be at least a little change. I’m also sad that his esophagus is still not healing. I figured that he was still eating at least one trigger, because he has still been drinking a lot with meals, and not eating much.
He’s going to be taking what the EoE world calls the “slurry.” It’s basically a vial of asthma steroids (Pulmicort) mixed with five, yes, FIVE packets of Splenda, twice a day. I’ve been told by other mom’s who have been doing this longer than me that it can be mixed with other things, and still achieve the correct viscosity to stick to the esophagus. However, we were instructed to only use Splenda. I’m having a really hard time accepting that I have to willingly give my child that much of a man made substance that isn’t exactly touted as a health food. However, I was not able to find anything conclusive about possible harm it could cause in humans. There are some studies that link it to liver problems and leukemia in mice, but they are given massive quantities, more than what would equal 10 packets a day for a 7 year old. So, while I’m going to keep pushing for another option, I’m going to try not to freak out about it. We eat incredibly healthy regularly, avoiding chemicals and dyes as much as possible, and this could help him feel better, eat more and gain some weight. We have to get his esophagus healed, as he’s got some of the rings common in EoE patients forming. The benefits certainly outweigh the risks as far as I’m concerned, but that doesn’t mean I like it.
We have our next clinic appointments in a couple of weeks. We will discuss the long term plan as far as diet is concerned then. I’m getting lists and information ready to plead my case for how I would like to proceed, but as always, the doctors will have their own ideas as well. I’m not the expert here, so I will wait until we have an official plan and update then.