Drum Roll Please.....Scope #7 Results

Again, I received a phone call from Dr. Putnam on Friday but waited until I received the pathology reports to post this entry. Because Dr. Putnam was only concerned with Lucas' upper and lower esophagus, there were no samples taken from the Duodenum 3rd and Body/antrum.

(A) Distal esophagus (bottom of the esophagus)

(B) Proximal esophagus (top of the esophagus)

Sample A showed a peak count of 24 eosinophils per high powered field. And Sample B showed a peak count of 0 eosinophils per high powered field once again!

To compare from his previous scope in September, Sample A decreased quite a bit from 63 to 24. Sample B came back CLEAN again. Woohoo!!!!

So good news.....

Lucas continued to scoped CLEAR in his upper esophagus!!!!!! Also, his lower esophagus is looking so much better. The increase in the dosage and amount of the PPI has helped quite well.

After receiving the wonderful news from Dr. Putnam, we broke down Lucas' medications and what foods he's been off of and which ones he has reacted to previously. We were trying to determine what to trial.

The medications:

• -Zyrtec 5mL 1x/day
• -Nexium caps 20mg 2x/day
• -Pulmicort slurry .50mg/2mL 2x/day

Restrictive diet:

• Wheat
• Eggs
• Soy
• Fish (fish and shellfish)
• Nuts (peanuts and tree nuts)
• Oats
• Corn
• Dairy

What he's reacted to via skin contact (IgE reactions):

• Wheat
• Eggs
• Oats (very slightly)
• Lobster (very slightly and he's never had lobster)
• Corn (only thing he reacted to on the patch testing

What we know he's reacted GI-wise:

• Dairy

After much thought, Dr. Putnam has allowed Lucas to give peanuts a try. He told me to give Lucas either peanut butter or peanuts at least 5 of the 7 days a week. If he's doing well, then he'll be scheduled for another scope in 3 months. If he begins to have symptoms, we are to call Dr. Putnam. At that time, depending on how reactive/symptomatic Lucas is will depend on what and when Lucas will trial next. We are hopeful that peanuts will be able to be safe but only time and Lucas' body will tell. 

I will say, Lucas was so excited to finally start to trial something. He called me Friday night from Daddy's phone to tell me that he was about to eat a peanut butter sandwich (on his safe bread) and he couldn't wait to try it. For his sake, I hope it works. But if not, we will cross that bridge. 

Reason to Celebrate!!!! Results Are In!!!

Friday morning, while sitting in my first of many gymnastics seminars of the weekend, Dr. Putnam called to inform me of what the next phase of treatment would be. I'll get to that in a minute. I always wait until I get the pathology report from MyChart to be able to compare his new results to his previous. Without much further ado, 

(A) Duodenum 3rd

(B) Body/antrum

(C) Distal esophagus (bottom of the esophagus)

(D) Proximal esophagus (top of the esophagus)

Samples A and B came back normal. Sample B did show an improvement over his previous scope in May.

Sample C showed a peak count of 63 eosinophils per high powered field. And Sample D showed a peak count of 0 eosinophils per high powered field.

To compare from his previous scope in May, Sample A remained unchanged. Sample B showed improvement.  Sample C increased slightly from 59 to 63. The most drastic change came in Sample D were the count went from 58 eosinophils per high powered field to ZERO.

So good news.....

Lucas scoped CLEAR for the first time ever!!!!!!

Oh. M. Gee!!!! For our avid blog readers and those who have been following our journey should note how important and significant this moment is. Since DX (diagnosis), Lucas has NEVER scoped below 58 in his upper esophagus. From May to this scope, Dr. Franciosi made the only change of increasing the Pulmicort (steroid) from .25mL 2x/day to .50mL 2x/day. He didn't make any changes to the restricted diet or Nexium (PPI). 

Now for the not so good news (but not bad news).....

Dr. Putnam's concern for Lucas' lower esophagus during the initial scope (he said it felt leathery when taking the biopsy sample) was backed with evidence that it is still pretty active. His lower esophagus did show a minor increase in eosinophils. They went up by 4. Dr. Putnam's call on Friday brought with how we are going to treat the lower esophagus. He wants to increase his Nexium from 10mg 1x/day to 20mg 2x/day. He's hoping the increase will help alleviate any inflammation he's having. 

Here's the gist of the revised treatment plan:

-No diet changes, continue with restricted diet he's maintained since November

-No steroid changes, continue taking the .50mL 2x/day

-Increase PPI from 10mg 1x/day to 20mg 2x/day

-Return in 3-4 months for follow up scope

I'm hopeful that in 3-4 months he will continue to scope clear in his upper esophagus because of the no diet or steroid changes. I'm hoping that the increase in the PPI will also result in a clear scope of his lower esophagus. And hopefully at that point, he will be able to add something back into his diet. I know he's dying to add in either nuts or soy.

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!

The latest development

After 4 weeks of attempting the wheat, egg, and corn free diet in addition to the Nexium, I called to check in with Dr. F's nurse. I explained to her what's been going on and how Lucas has been doing. She seemed a little disappointed that he wasn't on the diet exclusively. Let me say that while I tried my best (and I know I slipped a few times) to make sure he was given foods that didn't contain any wheat, eggs, or corn, it's easy for other family members to forget. The nurse did give me a good analogy to help explain to family members: 


When he eats foods that contain the allergens he may not show outwardly symptoms or it can take a few days for symptoms to present themselves but internally on a cellular level those foods containing the allergens are doing him harm.


Makes sense and I totally understand where she is coming from. We go back next week for an 8 week follow up. She didn't want to give us a scope date because of this latest development. Ideally, they want the child to be exclusively on the diet (without "contamination") for at least 8 weeks. I'm hoping that when we visit next week and discuss his progress further, that we do get the scope date. That will at least give me something to hold onto and KNOW that his diet has be a certain way. 


I have been working hard and teaching him which foods he can and cannot have. At his age, 1) he needs to know what makes him sick 2) when he is with others who are not familiar with his situation, he can inform them and 3) so he can educate others when I'm not around.


He is doing good and handling the food situation fairly well. He still gets bummed over some foods but he's accepting it. He's taking the Nexium like a pro and doesn't complain about taking it.

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.