Elimination Diet...1 yr Later

The week before Thanksgiving last year, Lucas went in for scope number 3. The results were pretty devastating. His count in his upper esophagus was greater than 100. He had been off Flovent (steroid) and we only eliminated wheat, eggs and corn. 

The week of Thanksgiving, the Monday Nov 21st to be exact, Dr. Francoisi called to discuss our next course of treatment. He had suggested at the consultation immediately after his scope that a Top 6 plus oats and corn elimination diet is what he was leaning towards. I was very hesitant because I didn't want Lucas to lose so many foods at one time and worried about what he would eat when he is already a picky eater. After much soul searching, I relented and decided we needed to take this next step for Lucas.

It was so hard and overwhelming figuring out what he could and could not have. I dreaded grocery shopping and having to look over every single label. I didn't want to take him to restaurants because I didn't want his to be exposed to anything. Family gatherings since it was around the holidays became stressful for me. Sleepovers with family members didn't happen because of my fears.

My first confirmation that I made the right decision actually came on Thanksgiving day while we were at a family gathering. I had prepped Lucas on what he could and couldn't have before we went. I told him he could have turkey and mashed potatoes but without gravy, etc.... It was during Lucas' third helping of mashed potatoes when he innocently asked me, "Momma, how do we make mashed potatoes?" DOH!!! They contain milk and butter. He hadn't had any dairy since that Sunday. And I learned, dairy produces a 1 day delayed reaction because he vomited on Friday. 

I was so worried about Lucas and how he was going to handle the new restrictions but he completely surprised me. His positive and upbeat attitude helped so much in the transition. He rarely asked for any of the unsafe foods. He seemed to know they made him sick and he didn't want to be sick. He would on occasion say things like, "When I get bigger I'll be able to have a hamburger." And I would reply, "Maybe someday." It's not my place to dash his hopes and dreams because who knows, he may be able to eat those unsafe foods some day. He is my little hero. I look "up" to him in so many ways with his maturity to his situation. In this respect, he's wise beyond his years. He inspires me and his condition has certainly made me a better mother. 

In the past year, Lucas has tried some new foods that are safe. Some he liked and we added into his diet. Others didn't go so well. He told me one time when trying peas, "Maybe when I'm 5, I'll try peas again." After his 4th scope and his upper esophagus came back over 100 again, we added in the Pulmicort slurry (steroid). When we got the results from his 5th scope, his upper esophagus came back with 58, I knew the steroid and diet were working together. From scope 5 to 6 we increased his steroid dosage and his upper esophagus FINALLY came back CLEAR!!!!!!!!!!! He will go for scope #7 in January and I'm hoping to be able to begin a food trial then. When we started the elimination diet, Dr. F wanted us to do weekly weight checks at his pediatricians office. He wanted to make sure Lucas didn't lose weight. I am happy to report that at his 5 year check up, Lucas gained 5 pounds in the last year. He went from 38lbs to 43lbs. Since his last scope, his symptoms seem to be doing better. He's not regurgitating nearly as much. I really can't remember the last time he vomited. He still coughs and clears his throat but not nearly as much. 

I'm thankful I took that leap. I'm thankful for Lucas' strength. I'm thankful he's doing so well. I'm thankful for everyone who cares about him and us. I'm thankful for this journey even though it'll never be over until a cure is found. I'm thankful for the EoS community. I'm thankful for Cincinnati Children's Hospital.

Follow Up..8 Weeks

We returned to Cincinnati this morning for the 8 week follow up visit since we were last there. Here's Lucas coloring on the floor while we waited for Dr. F.

He's gained 1lb since July and grown very minimally.  I caught Dr. F up to speed on what's been going on since our visit. I really like how open he is. He seems to listen and gives feedback but takes my personal feelings into account. He mentioned something about possibly eliminating milk but said we can wait until after his next scope. He said Lucas definitely has EoE but the reflux in conjunction is still up the air until he is scoped. I told him about an unprompted conversation Lucas and I had the night before. Lucas was taking his nightly meds and asked me why he doesn't take his Flovent anymore. I told him that Dr. F said he didn't need to right now. He said he missed his Flovent and that it made him feel better. I asked him if he liked the Nexium and he said no and that it doesn't make him feel good. We are holding off on the Flovent (or Pulmicort) until after the next scope. Dr. F wants him to stay on the Nexium until he is scoped to see if it is having any effect on the eosinophils. 

So here's the next steps:

-Continue with Nexium

-Continue with strict elimination of wheat, eggs, and corn

-Re-scope date is set for mid-November w/ follow-up/results the week after

-Reevaluate treatment plan after scope

I'm pretty satisfied with the visit. Much better than any of our visits with the local GI. After the visit, we met a fellow EoS family at the Cincinnati Zoo. We had a great time. We saw lots of animals and some *shiver* creepy insects. We rode the train and the carousel. 

That's his new buddy Caleb. Caleb also has EoE. We stopped to eat on the way home. That was a complete bust. While I ordered him grilled chicken (which he didn't get to eat) and french fries, he proceeded to vomit all over the table, chair, floor and himself. Luckily, I had a change of clothes for him and my mom was with us. The staff at the restaurant were awesome in helping us, my mom gave the waitress and generous tip! This episode does make it the third this week. 

Until next time!

Tomorrow begins a new test

For two weeks, Lucas has been on the Flovent, Nexium, and food elimination (wheat, eggs, and corn). Tomorrow, we remove the Flovent once again. I'm hoping for the best. He's had 2 episodes and those seem to be when he's sleeping. Again, I didn't hear him cough in the middle of the night to know when he's doing it. I only know because his sheets/covers/PJs are covered in dried up vomit.


The diet seems to be going well. It isn't easy but it's getting better and more manageable. I have let Lucas help make some of his food and he's been helping pack his lunch for school. We've talked to him about wheat, eggs, and corn and what those types of food do to him. He does get disappointed when he can't have something but I'm doing good about highlighting what he CAN have.


We went out to dinner a few days ago. I ordered Lucas grilled chicken and fries. For the first time that I can remember, he DIDN'T cough during the meal. It was refreshing and gave me some reassurance. It's a moment that I will hold on to. Just like when he rolled over for the first time or took his first steps. I know he has a long road ahead of him so I'm enjoying these small victories.


My hope for the next two weeks is that he continues to do good with the Nexium and elimination diet. I check back in with the nurse at that point. I'm a little nervous about removing the Flovent again but it's the only way for now to know how he's truly doing.