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. 

Fish Is Not What It Seems For The Boy....Scope #9 Results

After playing phone tag for a few days, Dr. P called and had some okay news to share.  Scope results:

(A) Distal esophagus (bottom of the esophagus)

(B) Proximal esophagus (top of the esophagus)

Sample A came back with 33 eosinophils per high powered field. Sample B came back zero!

Comparing from May's scope, his lower esophagus showed some inflammation. His upper esophagus remained unchanged. 

For the score keepers: 

-4th scope in a row with his upper esophagus remained CLEAR!!!!

-no medicine changes were made from January

-trialed fish

Dr. P expressed concern over the inflammation and declared fish unsafe for Lucas. While Lucas didn't exhibit any outward symptoms that we are used to, it would've been just a matter of time if we continued with fish. I thought Lucas would be bummed by the news but he surprised me with a resounding cheer that fish is unsafe for him. 

Lucas has expressed to us that he really has no interest in trialing tree nuts and I told Dr. P. Anything beyond tree nuts will get us into foods that have caused skin reactions to or are known triggers. Dr. P had me ask Lucas what he really wanted to trial. Lucas exclaimed, "EGGS!!!!" Dr. P also said that Lucas is now at the age where he can help make decisions in regards to which foods he wants to trial.

With the inflammation, we are to give Lucas a month off from trialing anything new. Then we can start eggs. If Lucas starts exhibiting outward symptoms, then we'll know for certain that eggs are unsafe. If he doesn't show any outward symptoms, then we'll scope (4months instead of 3months). If eggs are deemed unsafe by either, then we will halt trials for an unspecified amount of time. If eggs prove to be safe, then we'll try something else.

While the results were not what we hoped for, Lucas and I both aren't disappointed. We gave fish a try and unfortunately they are a trigger food. We will be hopeful about eggs but will not be disappointed if they fail. 

He's one for two when it comes to trials. 

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. 

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. 

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*

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.

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.

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.