Elimination Diet...2 years later

I know it's been awhile since I've updated. Life gets in the way like that. Since my last post, Lucas started Kindergarten and is doing great in school. Before he started, I had a 504 meeting with his teachers, counselor, and county NP. Everyone was on board and eager to make accommodations as needed. 

I spent the past weekend in Cincinnati for a Symposium on EoE presented by The CURED Foundation. Lots of wonderful information. My brain is still processing it all. I caught up with fellow parents and met several new ones. 

So, Lucas has been on the Top 8 plus oats and corn diet for now 2 years. Since January 2013, he has completed two food trials at a rate of 50/50. He successfully passed peanuts/peanut butter and he's failed fish. We are currently trialing dairy. I know in my last post we had decided on eggs but after much thought, we switched to dairy. He's been loving the dairy trial. For his birthday last month he got to have "regular" vanilla ice cream. This thanksgiving will be his first in two years that he'll get to have "regular" mashed potatoes. 

We travel back to Cincinnati next month for scope #10 to see if dairy is safe or not. This scope will determine a huge course of action going forward. If he passes, then we will continue trialing. If he fails, then we will take at least 6 months off from trailing. Wish us luck. I have zero expectations for this upcoming scope. I hope for Lucas' sake that dairy is safe but he understands that it's up to the scope results and what Dr. P says. 

On The Road Again....Scope #9

As many of you know, we traveled once again to our favorite children's hospital the other day. We didn't make any grand appearances with other EoS families but Daddy/Hubby joined us for the first time since we initially went up there 2 years ago. It was also his first time meeting Dr. P. Our ride up was uneventful. (Yay!) We pitched ideas of going to a few different places afterwards but opted to just head home. However, since this was Daddy's first time going, he had to learn the special "rules" we have in place. When we travel to the main campus, we always stop for lunch at the cafeteria and we always stop and get a gumball (or two) from the machine in the gift shop.

Just like any other visit, Lucas must have his vitals taken.

Then it's the wait until go time. Which includes watching Cartoon Network and playing with Legos. 

Momma even joined him on the bed.

His favorite stuffed animals and blankie had hospital bracelets on too. They were prepped and ready for surgery as well.

Every time we go, the nurses always give Lucas an extra bracelet to alert his food allergies to the surgical team.

And we're off, headed to induction OR room. He looks a little nervous.

But before he had too much time to think, Dr. P started joking around with him. Dr. P pretended that Snoopy was a telephone instead of a stuffed animal. It was the perfect thing to calm Lucas' nerves and send him into a laughing fit.

We watched him gently succumb to the bubblegum flavored air and headed to the waiting area. It wasn't long when Dr. P joined us in the consultation room. He said visually, Lucas' esophagus looked perfect. We discussed a little about what we wanted to trial and few of our concerns about future trials. He agreed with us about the next trial and gave us a bit of reassurance that future trials are hopefully.

Once in recovery, we joined Lucas and he was pretty quiet, unlike his chattiness he displayed earlier. The PACU nurse even commented, saying he was the strong and silent type. But when he was ready, he was ready. He wanted to waste no time with getting changed.

Did I mention that he tends to be grumpy when he's waking from anesthesia? The race car wheelchair couldn't get here fast enough. While waiting he said to us, "Do you know how I know how brave I am?" We looked and replied, "No." He paused (must've tried to think of a good answer) and responded, "Cuz I just am." That's my boy.

Finally, the wheelchair got here and we set off for the cafeteria. He had applesauce and an Enjoy Life Choco-BOOM bar. I asked him to smile.

Clearly, the anesthesia hadn't wore off. Still funny to look at. He finished and on our way out, bought our gumballs. The ride home was rainy but uneventful. Dr. P will call later this week with the biopsy results. We are pretty hopefully that Lucas will be able to add fish back. 

Pathology Results for #8

Lucas' scope was last week and Dr. Putnam called me a few days ago with the results. He said that Lucas' results were perfect. The pictures taken looked great. Again, I waited for the pathology report to post. So without 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, no diagnostic abnormality. 

Sample C came back normal, no diagnostic abnormality. 

And Sample D came back normal, no diagnostic abnormality.

Did you catch that? Dr. Putnam said that Lucas' results were perfect and he wasn't joking! 

To compare from his previous scope in January, Samples A and B have remained unchanged. Sample C decreased from 24 eosinophils per high powered field to ZERO. The most drastic change came in Sample D remained the same at ZERO. This is his first official scope that has come back completely clear!

For the score keepers: 
-3rd scope in a row with his upper esophagus remained CLEAR!!!!
-1st scope that his lower esophagus came back CLEAR!!!!
-no medicine changes were made from January
-trialed peanut butter/peanuts

Peanut butter/peanuts are keepers! He successfully passed his trial. WOOHOO!!!!! Going into this scope, Lucas and I talked about what he wanted to trial next. We narrowed it down to two choices: 1) tree nuts 2) fish (not shellfish).

After much thought, we decided to trial fish. For us, it will hopefully add another protein source, meal worthy (not just snacky foods), and something he had liked previously before the elimination diet. Lucas is so excited!

Tonight, he spend the night with my in-laws. My MIL prepared fried cod and sweet potato fries for him. She used a safe breading and used coconut milk and egg replacer to adhere the breading. She fried the cod in canola oil. I was able to speak to Lucas and he exclaimed that he LOVED the fried fish and the sweet potato fries. I'm so happy he likes it. My heart is happy that my boy is doing well. 

For your viewing pleasure, highlights from our Cincy trip. 

Before he freaked out and told me he changed his mind, he didn't want to do this.

He couldn't be bothered. Too busy playing his 3DS.

Playing with the shadow wall in the waiting room.

We also had the great opportunity to spend time with one of the many families we've grown to know and love. The Simmes family was gracious to let Lucas and I not only visit but to crash at their place for the night. I didn't get any pictures (shocking I know) of our boys playing and going crazy. They had a great time and I had a great time catching up with Momma Simmes. 

Our Quarterly Trek To Cincy

 Today, Lucas and I made what seems to be our quarterly trek to Cincinnati Children's Hospital. He was scheduled for scope #7 (6th one at Cincy since July 2011). We were coming off the heels of the great news we received from scope #6 and hoping to continue the up and up slope. As always, our drive was pretty uneventful. We ended up there 30 minutes early but it's better than to be early that late.  Once in our holding room, Lucas got to some serious work on building a Lego airport.

He did a really good job building it on the fly. He even made an airplane that held up to three passengers. He LOVES Legos!!! He can spend hours playing with them. The NP with anesthesia came in to check his vitals.

He's such an old pro at this. He's like, "whatever". The nurse brought in a Phineas and Ferb movie for his to enjoy. He also brought along a few new stuffed animals, Chippey the Black Bear and Snoopy. Blankie also joined in the festivities.

While we waited in the holding room, Dr. Putnam stopped by to say hello and check in. He shook Lucas' hand and made his whole wiggle up and down. Lucas thought that was pretty funny. Transport came to take us back into the OR. The aide asked Lucas if he knew what he was having done. He replied, "Uh my scope." She also asked who the Dr he was seeing and he replied, "Mr. Putnam." Lucas rode down the hallway and into the OR like this:

He was chillaxin' his way into the OR. Everyone who saw him either in the hallway or in the OR thought it was pretty humorous. He's become so used to having this procedure that it's nothing to him. Dr. Putnam asked who he brought along and purposefully called them by the wrong animal. Lucas chuckled and quickly corrected him. Dr. Putnam picked up Chippey and pretended that Chippey was smelling Lucas' armpit. The team asked Lucas to verify who he was and he even spelled his last name for them. They were pretty impressed. Lucas decided on Bubblegum flavored air. 

While Lucas was trying to wake up in recovery, I met with Dr. Putnam in the consultation room. He gave me a copy of the pictures taken of Lucas' esophagus and said visually it looks better. He didn't see any furrowing that previously had been there. He said once the biopsy results come back, we'll go from there. But he seemed happy with the progress Lucas has made.

I was called into recovery and found Lucas laying like so:

Unlike last time, he didn't guzzle two full cans of Gatorade. He barely drank from his one can. He wanted to be discharged ASAP because he knew our next stop was the cafeteria to peruse the Enjoy Life brand selection. Our nurse was great and friendly. While waiting for transport to bring the race car wheelchair, another EoE kid was wheeled into the spot next to ours. We couldn't see him but as his nurse was trying to wake him, Lucas loudly responds, "I'm AWAKE!!!" I quickly told him that the nurse wasn't talking to him but to the other boy. Transport arrived and brought us down to the main floor. Lucas and I dined in the revamped cafeteria then made our way to the car. The nurse let him keep his round pillow and arm board. He thought it was funny to place the round pillow around Chippey's neck:

We had an uneventful ride home. Lucas did great, as always. Now we just wait on the biopsy results. *fingers crossed*

And Here We Are Again, # 6

It's been 3 months since our last visit and this go around we were meeting with our new GI doctor, Dr. Putnam. But before we headed to Cincinnati, Lucas had his very first soccer game. He was super excited and couldn't wait to show his moves.

He really enjoyed playing and I had a really fun time watching. I never thought I'd be a soccer mom but I'm loving it. 

His coach was great. He did a great job rotating the kids and switching up their positions. At the end of the game, he had them huddle together. Their team won by the way, 3-0!!!!

After the game, we left for Cincinnati. Mimi (my MIL) traveled with us. My FIL was kind enough to use his Best Western Rewards Points on a free room for us to stay in. After checking into the hotel, we headed to a fellow EoS family's house. The Simmes were gracious enough to invite us over so Lucas and her boys could hangout together. 

We left and headed back to the hotel. Lucas took a much needed bath and got ready for bed.

He was so wound up it took him almost an hour to fall asleep. He had such a blast playing with the Simmes kids. He woke up pretty easily but wasn't too thrilled to be up before 7am.

We made our way to the hospital. It's been over a year since we were last at the main campus but it felt good being back there. We first met with Dr. Putnam in the clinic. Ms. Simmes had given me some advice the night before about Dr. Putnam. She said that he's soft spoken (confirmed), blunt (confirmed), and great with kids (also confirmed). The younger Simmes brother actually calls him Dr. Funny. Lucas warmed up to him great. When Dr. Putnam came into the room he immediately spotted the bug shirt Lucas was wearing and commented on it. Then he asked Lucas his name, which Lucas replied, "Ummm Lucas". He spoke with us and gave Lucas a look over, joking about where his belly is and whatnot.

We left the clinic and had a few minutes before we needed to report to Same Day Surgery. We headed to the cafeteria to check out their selection of Enjoy Life Brand Foods since the hospital is the only of it's kind to offer Enjoy Life products outside of grocery stores. We found a new flavor cookie for Lucas. We planned to return after the scope.

We reported to Same Day Surgery and did the usual check in, go over medical chart. The nurse brought in some cars for Lucas to play with.

He also set up camp on the floor to color. Little Foot (aka Baby) and blankie made their appearances. I don't think either one has missed out on a scope. The nurse checked his vitals.

After the nurse left, I got wind that Ms. Simmes was in the waiting room (the younger Simmes boy was having surgery to help with his tube placement). I went out and chatted with her a bit. Shortly, a fellow EoS momma showed up, Ms. Scott. She's an RN there and happened to walk through Same Day Surgery (although I'm pretty sure she knew Ms. Simmes would be there). Ms. Simmes got the call that her little man was ready in recovery. Ms. Scott came back with me to our room and chatted a bit. It was great to see both moms and to have a little community who can relate. Even Dr. Putnam stopped by to say hi.

Transport came in right on schedule to wheel Lucas back.

With Little Foot and blankie in tow he was set. He chose the bubblegum flavored air. Dr. Putnam introduced Lucas to the surgical team as "Ummm Lucas" and that he was about to turn "Ummm 5". The team, Lucas and us were laughing. Once he was under, I kissed his forehead, told him I loved him and headed to the waiting room. We met with Dr. Putnam in consultation. He mentioned that Lucas' lower esophagus looked inflamed and when taking the biopsy sample it felt leathery. He didn't give much information because he wants to look at his past scopes. He said we didn't need to return in a week only that he or his nurse Betsy will call.

Once he was awake, we were escorted back to the recovery room. Our nurse was super friendly and Lucas looked a little less than thrilled.

He was really thirsty and demanded Lemon Lime Gatorade. And he wanted his IV out.

After guzzling the first can of Gatorade, the nurse kindly removed his IV and used a spray that helps the adhesiveness from hurting. He was cracking me up because once she removed it, he kept his hand like this for at least 5 or so minutes.

After guzzling his SECOND Gatorade, he announced that he had to potty. I carried him to the bathroom, only to discover that he didn't have to go number 1 but had to release the loudest and longest fart ever. All I could do was laugh. Once he was ready, he got dressed and we told the nurse that we planned to head to cafeteria to grab a bite to eat. She brought back a wheelchair, the wrong one. She brought the typical one and Lucas once again, demanded for the race car wheelchair. We loaded him up. This go around he was freezing, so the nurse graciously offered him a heated sheet to wrap around him.

She wheeled him down to the first floor, then turned us loose with the wheelchair to head to the cafeteria. His grub of choice was a few Enjoy Life Happy Apple cookies, two bags of Lays potato chips and water. After we finished we headed home. He played his Vtech Mobigo all the way home. Once home, he was raring to go. Now the hard part, waiting on what happens next.

Overall, today's scope went well. Lucas, like many EoS kids, has become a seasoned pro at scopes. He did tell Dr. Putnam that if he is able to add a food back he either wanted it to be nuts or soy. 

Lucas and I had a conversation before bed last night about the possibility of adding foods back. I asked him what does he want most back. He said, "I have two. Corn and nuts." I told him that corn was a no go, at least it will be for quite some time. So he changed corn to soy. I told him that both of those options were great choices. Then we discussed how corn, dairy, wheat and eggs will probably be off the list for awhile. He seemed content and understanding, knowing why those foods are not options.

Thanks for reading this novel of a post. I'll update again when we get results and what the next phase will be.

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.