As promised here is part 2…
We were given two choices as “treatment plans” for Sy.
The first was to be a part of a clinical trial for a drug that they are experimenting with for EE; not much is known about the long-term side effects hence the clinical trial. The paperwork straight-up said that the purpose of this study was “to test the effects (both good and bad) in subjects with EE.” They don’t know for sure but it seems like there is about a 50% improvement rate.
The other was to do a radical food elimination diet for Sy. We have to remove the following:
1. gluten (wheat, flour products)
2. soy
3. dairy
4. eggs
5. fish/shellfish
6. nuts
7. oranges
For those of you who read food labels, this stuff is in EVERYTHING! However, we’ve already removed much of this from his diet already so it shouldn’t be too traumatic for him. However, he will have to get used to drinking elemental formula as a milk. Any my boy loves his almond milk!! (We stopped dairy 2 years ago.)
It was a tough decision but it seemed like we could possibly get to the bottom of the problem more through the food elimination. If Sy was much older this would be near impossible to do but we have already cut out many of these foods and he is young enough that I still “control” what he eats.
God just seemed to make it clear that for now, this was the best choice. Neither Jordan nor I had a peace about taking the risk with a 3 year-old to do the clinical trial at this point. Sy would also have to potentially stay on the drug forever or until something else is discovered. Once you stop the drug, the EE returns.
So we fly back to Cinci in 3 months to do another endoscopy. (You have to go back every 3 months regardless of whether you do the clinical trial or food elimination.) If his scope comes back bad, then we will re-consider the clinical trial. If his scope comes back improved, we will take the next 3 months to slowing re-introduce a food (i.e. dairy) and then go back in 3 more months to do another scope to see if his body can handle dairy. Make sense? It’s not ideal to have to do all of these scopes, but at this point there isn’t any other real “marker” to go by. Unfortunately, these trips to Cincinnati will be costly but these docs are the best and there aren’t any EE Centers in the southeast.
Wow! Sorry for the lengthy post but just wanted to let you all know. Thanks again for your prayers and support. And no worries, Sy can still eat raisins!!
