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. 

Can you believe it's been 3 years?

Late on Sunday, April 21st, it dawned on me that 3 years ago Lucas was diagnosed with EoE.  It's been an incredible journey and I know that it will never end until a cure is found.  We've had our good moments and certainly our bad moments but we wouldn't be where we are today without each one, good or bad.  

I remember very vividly taking Lucas to Kosairs Children's Hospital for his first scope.  This was after basically twisting our local GI's arm to have it done.  Lucas was 2 1/2 years old.  None of knew what to expect.  Lucas was given Versed to help calm him before the scope.  The results came back with 80 eos/hpf.  He was placed on swallowed Flovent and nice trip to the allergist.  Allergist results came back IgE reactive to wheat, eggs, and several environmental allergens.

It would be another year and 3 months before he was scoped again.  This time after the insistence of our local Allergist, to get a second opinion at Cincinnati Children's Hospital.  We spent a very long week up there.  Lucas was scoped, allergy tested again, had an impedance probe, etc.  We met with Dr. Francoisi and before leaving decided to switch Lucas' care up to Cincy.  It was the best decision we've made in regards to Lucas' care.  We left with a treatment plan.

Scopes #3 and #4 were pretty bad and very disappointing.  Scope #3 was not as bad as #4.  Scope #4 felt like a kick to the gut.  His eos count was over 100.  This is when Dr. F and I decided to give the Pulmicort slurry a go.  Clearly the elimination diet alone was not enough.

Around this time last year, Lucas was in between scopes #4 and #5 that we learned Dr. F was leaving Cincy.  Luckily, we were able to have and meet with him on scope #5.  At that time, Lucas was finally showing positive signs that the treatment plan was heading in the right direction.  But he still had a ways to go and Dr. F felt we would be better with Dr. Putnam instead of the PA.  Again, best decision made.  Dr. P picked up right where Dr. F left off.  

Scopes #6 and #7 provided the best news to date for Lucas.  Both scopes came back clear in his upper esophagus.  The combination of the corticosteroid, PPI, and elimination diet had proven successful for Lucas.  

Lucas will have scope #8 in about a week, this scope will determine if the food trial he's been has been successful.  Lucas has been trialing peanut butter and while he's not been symptomatic, we don't know if he's been reacting on a cellular level until the biopsies come back.  We are hopeful that he will be able to keep peanut butter and to begin a new trial.  

I also want to mention that I belong to several private FB support groups for EGIDs.  When he was first DX'd, these groups were overwhelming and I felt intimidated sharing our story.  But over time, I began contributing to these groups.  Without these groups I don't know how we would've coped.  We are spread across the nation but we are bonded by our children's disorder.  Many of these families I call friends.  I can lean on them when I need to and they can do the same with me.  There's no judgment, no right or wrong approach to our treatment plans, just compassion, support and love.  I'm proud to be apart of these groups.  

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*