It's been nearly 4 weeks since Nathan's scope, which by the way was not good. His EOS counts were high again indicating that the foods we were trialling (potato, chicken, rice) were hurting him. Mark and I have given tons of thought to our options and weighed all the pros and cons of each over these past 4 weeks. We aren't 100% comfortable with any of the options.
Our two options are:
1.) Keep doing what we're doing with no steroid treatment and continue getting no where. (We've been at this 2.5 years now and haven't been able to find anything safe to add for the last 2 years.) Trialling and removing foods has been awful, such an emotional roller coaster for all of us.
2.) Start him on a swallowed steroid and begin food trials again in hopes that the steroid will work it's magic and allow for us to find more "safe" food for Nathan. I use the term "safe" lightly here... as these foods are highly likely to be unsafe if eaten without the steroid medication. In essence, the steroid medication will keep his body from sending out army's of eosinophils to his esophagus when he eats food. For some kids this works wonders and for other's it doesn't help. Medicating him so he can tolerate eating healthy foods just doesn't make sense to me, it's so frustrating! We already do this with the Erythromycin we give him 4x a day for his gastroparesis, which I hate the idea of just as much.
Since the scope on August 22nd, Nathan has refused to drink ANY of his EleCare... he used to guzzle it down. This has nothing to do with the scope, in my opinion, just a timing coincidence... he says it tastes bad and that's why he doesn't want to drink it anymore. Can't argue with that at all, I wouldn't want to drink the stuff either. So we tried Neocate Splash "juice" in the tropical fruit flavor. He drank half of an eight ounce box the first one I gave him which was encouraging, but ever since he's refused to take more than a "baby sip", which equals sucking on the straw until the "juice" barely touches his tongue and then he stops and says, "I'm full." I tasted it to see what it was all about.... didn't think there was such a thing that tasted worse than EleCare, but there is... it's Neocate Splash tropical flavor. The fact that it's a wannabe "juice" yet it's a milky white color doesn't help thing either.
Ever since Nathan was diagnosed our goal has been to treat this disease with as little medicine as possible and attempt to control it by diet alone. Two and a half years later that has turned into him literally surviving off of EleCare (probably the most unnatural, chemically induced "food", ahem... medicine out there) since he's just not into eating these days even his few safe foods. We are forever thankful for it because it's kept him ALIVE and GROWING, but it's really not in the category of us treating this disease without medicine. That being said we are going to go with option two and are going to try the steroid treatment. Another EoE mom shared her perspective, that it's better to give the steroid and have your kid be able to eat many REAL healthy FOODS vs. no steroid and living off of EleCare and minimal real foods. I couldn't agree more... where was this mom and her advice 2.5 years ago!?!? The lesser of two evils that's what we're going with.
I spoke with Dr. Williams tonight and he agreed that it was time to give this a try. So he's calling an an Rx for Flovent tomorrow morning and we'll start it then. Excited about the possibility of Nathan being able to eat more "normally", but scared of the unknown long term side affects. Most kids who are on a steroid regimen treatment for EoE have not shown terrible side affects, but since it's an "off-label" use for the drug and there haven't been any long-term studies conducted for this particular use of the drug it's nerve-wracking. Taking this medication won't "cure" him of this disease, it will hopefully, allow him to be in "remission" from it. There will still be many food trials and endoscopies in his future to see if it's working or not. The steroid will need to be taken twice a day... FOREVER. If the steroid is working and we stop it, food could start hurting his esophagus again. So if for any reason we need to stop the steroid in the future, he'll loose the foods we added while he's on it and go back to just a few safe foods.
Since Nathan has ZERO safe meats/proteins right now, Dr. Williams wants us to go ahead and trail turkey and beef. If we can get Nathan some protein, we can reduce his EleCare volume which is the ultimate goal! Nathan's diet will still be quite restricted compared to a "normal" kid, as we will still avoid the top-8 allergens. That doesn't bother us as our goal with this steroid isn't for Nathan to be able to eat chemically infused, processed "normal kid" junk food, we are just desperate for him to be able to eat HEALTHY REAL WHOLE FOODS without it making him sick.
We appreciate all of your thoughts and prayers as we turn down this new road, as it's one that's not been an easy decision.
Trying to remember:
Here's our perfect, angelic, baby boy, fast asleep tonight as Mark and I made our decision.