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. 

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.

Our Summer So Far

Since the scope in May, Lucas has stayed busy this summer. He's been attending a summer camp 2 days a week at my work and going to his Parent's Day Out the other 3 days. He's doing awesome in his swim class. He was recommended to advance to the next level. He's had playdates, went to Holiday World (who were great at accommodating his allergies), and generally living life to the fullest.

He's been doing great with the increase of the Pulmicort. He has been saying, "I don't want to take my medicines." But he hasn't flat out refused. He knows they make him feel better. We have a date set in September for our next appointment and scope in Cincy. Back in May, we had our last scope performed with Dr. Francoisi. He has since left Cincy and our case was turned over to the other GI Dr. Putnam. We will meet with him the morning of our next appointment and then he will perform Lucas' 6th scope that afternoon. I hope Lucas continues to improve. I also hope this little summer cold/summer allergies won't throw a wrench in it either. 


He ran a low grade fever for a few days and he's had a "barky" cough that's starting to go away. The cough is different than his "typical" cough and is causing him to flare slightly from the force it's producing.

He has had a few "treats" involving safe foods. We recently visited our favorite allergen friendly bakery, Annie May's Sweet Cafe. He helped himself to one of her AF super cookies. 

I also found White Rice Bread and made him Sunbutter and Grape Jelly sandwiches. He devoured 2 in one sitting. We now have some Brown Rice Bread and he had me toast it and spread grape jelly on it. It's a nice change for him.

Last weekend, I made him is favorite treat, Chocolate Chip pancakes. I used the Cherrybrook Kitchens Brand mix (it's gluten free, egg free, dairy free, and nut free). I added coconut milk, vanilla extract and Enjoy Life Brand Chocolate Chips. The batch made 12 and he ate on them for days.

As summer winds down, we will be gearing up for the next scope. Also, Lucas will resume taking gymnastics (he's been practicing his handstands and cartwheels) and will begin playing soccer. He's so excited to play soccer. Daddy bought him a soccer ball and for a few days they (he and the ball) were inseparable.

As I close this update, a year ago on July 25, our lives were forever changed. That's the 1 year anniversary date of our Week-long intake evaluation in Cincy. I'm am so glad I pursued going up there and I don't regret anything. We love the team up there. They are so caring, kind, and knowledgeable in Eosinophilic Disorders. We would not be where we are now without their help and expertise. I am forever grateful for them. I know we are in great care and I'm anxious of what the next year will bring.