Friday, November 30, 2012

Scope #4...

Nathan had his fourth scope yesterday morning and it's taken me all day yesterday and today to begin to process what we learned. While we don't have his official biopsy results back yet, visually Nathan's esophagus looked very inflamed to Dr. Williams similar to what it looked like when Nathan was first diagnosed with EoE. We will know his exact biopsy eosinophil numbers next week. In the mean time Dr. Williams wants us to go back to the food Nathan was eating when he scoped clean last August. That leaves Nathan with 6 foods plus his EleCare; bananas, carrots, green beans, squash, pears, and raisins.

Nathan wants nothing to do with these six foods right now. Yesterday, I thought it was just because he had the scope done and didn't feel like eating. He's never been that way after a scope though. Today, he ate one small box of raisins, two green beans, and two bites of cooked carrots. The carrots even had caramelized brown sugar on them and still he had zero interest in them. He's asked for his favorites today, potatoes, fruit snacks, and his Enjoy Life cookies a couple of times, but agreed when we told him that Dr. Williams said that he thinks they could be hurting his tummy. Nathan just replies, "okay" and continues on with whatever he was doing. Bless him for being so agreeable right now. God certainly knows our heart strings can't take but so much tugging when it comes to him wanting food we can't feed him right now. We've been honest with him about this whole situation, but it's just a hard thing to try and explain to him in a way that he understands but we must be doing an okay job of it since he's not throwing too big of a fit when we tell him he can't have something.

We have a follow up appointment with Dr. Williams on December 17th, we will further discuss our plan for Nathan at that appointment. Right now Mark and I are thinking that we will try our best to get Nathan to eat these six foods and then re-scope in 6-8 weeks to be sure that they are in fact "safe" foods for him. After that, things will go one of two ways. If his scope is clear we will most likely begin trialling foods one at a time and scoping in between to make sure his esophagus is tolerating them. If the  scope is bad, we will have to remove all foods and go completely elemental (meaning Nathan will get 100% of his nutrition from his formula EleCare for a while in order for his esophagus to heal before trialling any food.

For now all we can do is wait and pray that things get better from here. We know that God has a great plan for our sweet Nathan and that this is all just a tiny part of a much larger picture. We are thankful to be surrounded by such amazingly supportive family and friends. We'd be lost without you all.

Wednesday, November 14, 2012

Appt. with Dr. Irani...

Today we met with Nathan's allergist, Dr. Irani. He's doing well and she is pleased with his progress with growth and weight gain since the last time she saw him 6 months ago. For now, we aren't changing anything with his diet because he appears to be tolerating things for the most part. Since our last appointment with her we've added broccoli, white potato, rice, spinach, and his most "normal" kid friendly snack ever, Welch's Fruit Snacks to his diet. From the outside he seems to be doing well with these foods, however, he has thrown up from  time-to-time these past 6 months and Dr. Irani thinks that it could be a sign he has active eosinphils in his esophagus.

Nathan is scheduled for his next endoscopy this month on the 29th with Dr. Williams. We will know for sure after we get the results from the biopsies he takes during the scope whether or not Nathan can continue with the foods he's been eating. We've added so much and it's been well over a year since his last scope, if this one isn't good it's going to be a major setback trying to figure out what is triggering his EoE reaction now. But for now, I won't consume myself with worry over the many "what if" scenarios.

Today's visit did throw me for a loop however... she did skin prick allergy testing for environmental allergens because Nathan has shown signs of being symptomatic with an EoE flare during high seasonal allergy times. She also tested peanut and soy since they showed up last time via skin prick testing (peanuts 5mm wheal) and IgE blood work (soy).

Today, the peanut was a whopping 47mm wheal! I was given a new Rx for 4 EpiPens and told to always have on within reach of Nathan. After his first allergy testing, I was concerned about peanuts, but not too worried because the reaction was mild and didn't require him to have an EpiPen according to Dr. Irani. Well now, there's no other word other than terrified to describe how I feel about this. I am so, so, thankful that Nathan doesn't attend daycare anymore even though they were peanut free. The only time he's out of our sight is when he's in Sunday school which, I'll have to learn to be okay with. He loves going, and so far they've been great about only giving him food we bring for him during snack time.

We've always been concerned about Nathan and food when he's been at daycare in the past, but felt like he was being watched over closely and taken good care of. There were two missteps in the weeks before we left the daycare, but they were honest and straightforward about what happened each time. I was thankful that they were just foods that trigger his EoE.

It's been almost two years since we learned of Nathan's diagnosis, and while we are used to the day to day, and meal to meal worries of living with a fear of food for our son. It never goes away completely. It's always there, food... you can't escape it. How can the very thing that's necessary for life cause you harm? It's mind boggling and until there's a cure it always will be.

Knowing food could damage Nathan's esophagus with his EoE was one thing, it concerns us, but we knew it wasn't immediately life-threatening. He'd just throw up for a few days, maybe refuse to eat for awhile, but we still had our Nathan and could remove the food and try something different. Now, it's a whole new concern over the possibility of a food taking his life.