I want to start this post with a little comparison picture. Tinleigh got her feeding tube in January, three months ago, and has been elemental since then. Look at the cheeks on this girl! She’s finally getting the nutrition she needs. The day of her tube surgery she weighed in at 25 pounds. She was scoped this week and weighed in at 30 pounds. We definitely made the right decision.
Our initial plan after the kids being scoped in December was to wait until June to scope them again. We needed a break. Well that didn’t happen. Gage started having some reactions to the foods he was trialing and Tinleigh was BEGGING us to eat. Since it had been three months since her tube was placed it was okay now to go ahead and scope her. Same with Gage, we typically trial foods for three months then scope.
Gage was trialing cherries, tomatoes, pork and corn syrup. The cherries didn’t seem to be an issue. The pork we thought he was just truly allergic to and we were hoping it wasn’t effecting his esophagus. Some days he could eat pork with no problem. Other days he would cough, get itchy ears and throat. Tomatoes were starting to cause him to cough while eating them.
Typical scope day procedures. The kids were applauded for their good behavior and co-operation with everything. The doctor, anesthesiologist and I joked in the procedure room as Gage was being knocked out if we practice scope day at home because they do so well. Sadly, we’ve just done it so many times it’s just another day to them.
Tinleigh was first and she came out with the good results. I was fearful of what her results would show because she had eaten a few rice cakes and black olives in the weeks prior to her scope.
She showed no eosinophils in her biopsies so in a way she sort of passed rice and black olives.
Moving forward I fed her rice everyday for a week and have since moved onto green beans. In another week we will try blueberries. She will be scoped again in three months to see how things are going in there.
Next was Gage’s turn. Unfortunately his scope wasn’t so good.
As you can see in the first two pictures there are some bumps and lines, that’s bad. The esophagus should look smooth like the back of your hand. His biopsies showed greater than 40 eosinophils in the upper, mid and distal (lower) esophagus. Nathan and I were both very sad for him. This means we have to remove pork and tomatoes from his diet. We knew from seeing reactions while eating those two things we had to remove them. I’m still sketchy on the corn syrup but that’s mainly in candy and he’s not eating a ton of candy so we’ll leave it in and pray his next scope in 6 weeks is clear.
I had to have a talk with Gage after we got the results to let him know how things were and break the news about pork and tomatoes. I sat him on my lap and we talked about what the doctor told me and I showed him his esophagus pictures. He then asked if he’s allowed to trial corn. I got a little teary eyed and explained we first have to take away the pork and tomatoes then we have to let his esophagus heal for 6 weeks. We’ll re-scope him to make sure he’s all better THEN we get to possibly try corn. I sort of reviewed with him how crappy the pork and tomatoes make him feel to help him be okay with getting rid of them. He understood. He wasn’t thrilled that we have to wait but he never threw a fit or cried. I then felt I needed to talk about Tinleigh’s results with him. Explaining that she had a good scope and will get to add foods this time. I reminded him of how exciting it was when he had his first clear scope after getting his button and getting to start foods. We agreed to be happy for Tinleigh and celebrate her good scope. Down the road I can see how this is going to make things extra hard. One having a good scope and the other a bad one. I need to make sure I cover all feelings and emotions now with them so there’s no jealousy or acting out in the future. EoE is not fair to begin with, throwing crappy results on top of that makes it worse. Especially if your sibling has good results.