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.

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.

                                         

 

Eating Like There's No Tomorrow...

Nathan's been on his antibiotic for 8 days now. All of a sudden like a switch was flipped Nathan's appetite returned last night and it has continued throughout today! That boy has had more applesauce, chicken, and green beans today than I can keep cooked up and ready to serve just about! It's so puzzling because these are the same foods that he would look at the past couple of weeks and flat out refuse to eat! Not sure if his antibiotic is what's helped or not, his coughing at night seemed to go away the second night of being on it. I'm leaning more towards it being that the egg is finally out of his system. We'll just have to wait and see. We will do as the doctor ordered and continue the antibiotic for two more weeks and then re-trial the egg. Please continue to pray that his appetite stays so strong, there isn't much out there that gets me down in the dumps, but him not wanting to eat sure gets me there quickly! I feel like a victory has been won every meal he actually eats and it makes me so happy! (Even if it's the same three foods over and over again.) :o)

Three Weeks of Augmentin...

So I called Dr. Williams last Friday morning, because I still hadn't heard anything about a new Rx for Nathan's nasal spray medication. He said that Dr. Irani wanted to see him and do a nasal smear before changing his medicine to determine if it were allergy or infection causing his sinus problems and coughing at night.

Dr. Irani, being the amazing doctor that she is had us come in right away on Friday and took care of it! It turns out that there were no allergy cells and plenty of infection cells. :o( This is good news because it means his Nasonex it still doing it's job! But it is confusing news, because we are now left to wonder if the eggs really were a problem, or if it was just a coincidence that he started coughing two days after starting them and that drainage from a sinus infection is to blame. She started him on a three week course of antibiotics to help clear his sinus infection, once it is gone she wants us to trial the eggs again.

I am apprehensive of trying them again just because of Nathan's terrible fit he threw the day I decided to stop the egg trial. He screamed as if I were trying to feed him poison when he saw the eggs that morning and didn't stop screaming until I threw them in the trash. To me, that says he knows they made his tummy hurt.

Along with Dr. Irani's advice, Mark and I did agree to trial egg again, this time only giving him things with eggs that are baked. Because of his limited food choices the simplest things I can come up with right now are meringue cookies and meatloaf without bread crumbs in it for him to trial. If they seem to do well, I'll consider making him a "safe" version of cookies or a cake with real egg in it, but for anyone who has ever tried baking with anything other than wheat flour and dairy, it's a whole lot of work! Nathan is totally worth the effort, but he can't live off of baked goodies for every meal, and I'd rather him have at least one more real "meal" option! He hasn't been in to his meats (chicken, pork, or beef) here lately so maybe this will be a way to get him to eat some.

Also, I forgot to mention in my last post about the appointment with Dr. Williams...

To add to the confusion with all this, Nathan was switched from Prevacid to Nexium by Dr. Williams' nurse practicioner (due to insurance issues... GRRR!) about two weeks before we started the egg trial. I told Dr. Williams that the NP wanted us to give him half of the 10mg packet so that's what we were doing. He said that Nathan needed the whole 10mg packet, we started that Thursday morning. Nathan's coughing was better that night and the same for Friday night. I didn't think anything of it until Saturday night... we had forgotten to give Nathan his Nexium that morning and he coughed all night. Sunday, I was sure to give it to him and again, he slept quietly Sunday night.

So this adds yet another variable to this crazy puzzle as to what the problem really was, I am praying it was the sinus infection and incorrect dose of Nexium causing the coughing and gagging, egg would be a huge food for Nathan to add to his "safe" list! So as with all things EoE, we'll just have to be patient and wait for these three weeks to move along and if his sinus infection clears, we will try the egg again.

Worth EVERY Minute...

Appointment With Dr. Williams...

We saw Dr. Williams today for a routine GI check up, I was ever so thankful we had this appointment scheduled so long ago since Nathan has been having problems for the last two weeks. Ever since trialling eggs March 10 - March 20, Nathan has been coughing and gagging all night long and has lost his interest in food. Some days are good with his eating and some days not so much. A good day would consist of eating a pear or banana a few raisins, and 4-5 bites of chicken throughout the entire day plus drinking 15-20 ounces of his EleCare. A not so good day would consist of Nathan drinking 24 ounces of EleCare (which is only 50% of his daily calorie requirement), but picking at or flat out refusing any food presented to him.

So the plan right now is to switch nasal sprays (he's been on Nasonex since October 2011) and see if that helps. Dr. Williams is hoping that part of the problem is environmental allergies since they are so bad this time of year. He was supposed to contact Dr. Irani, Nathan's allergist to collaborate with her about which nasal spray to switch him to. I am hoping I get a call tomorrow that the decision has been made and I can go pick up his new Rx from the pharmacy.

We will then give it two weeks to see if Nathan's symptoms clear completely or greatly improve, if so we will continue on like we have been doing and move on to our next food trial, if not we will schedule a scope immediately and they will take a look and see what his esophagus looks like and do more biopsies. If we end up doing the scope and the biopsies come back with eosinophil counts I'm not sure what we'll do (well, I am, but I don't want to think about it... Nathan will be losing foods and it's not going to be easy on any of us). He's already so tired of eating the same foods day in and day out and so sad when he sees us or someone eating something that he can't have. I don't blame him, but how do you explain this to a two year old? We try, but he just doesn't understand right now. 

I'll be sure to post an update once we know more... we are praying for good news! Thanks to everyone who continues to pray for Nathan and our family! 

What a Year it's Been...

So, I've been a terrible blogger since my post back in November. In fact, I've not been a blogger at all. The Thanksgiving, Christmas, & New Year holidays were wonderful to us! Blogging was an extremely therapeutic outlet for me in the beginning of Nathan's diagnosis and I guess it still could be if I would just do it, but my hands stumbled upon quilting and sewing last fall and they haven't stopped since they started. It's my new therapy and escape from dealing with all things food and EoE.

Another reason for the lack of posts unfortunately, is the fact that Nathan has been doing so well! I am ashamed for not sharing good news with all my readers. We tried a few foods since my last post and some worked and some haven't. Wheat was Nathan's first fail and it devastated me. But I quickly remembered how blessed we were for going so long without a fail. Eggs are being trialled right now (we're on day 8) and there has been coughing and sneezing and a bit of a runny nose... typical fail signs, but we will continue on and see what happens. Has hasn't started refusing to eat them yet, so that's a positive sign. These days this lucky little guy is able to eat: chicken, pork, beef, apples, pears, green beans, carrots, raisins, potatoes, rice, marshmallows, and a variety of Enjoy Life cookies. We are beyond blessed for this! I know way too many other children out there with this that have fail, after fail, after fail, and have zero safe foods after months and years of trying to find one. My heart breaks for each of them. Nathan still has his feeding tube, but we only use it occasionally. He drinks 24 ounces of EleCare a day to supplement his nutrition. Typically he does great and gets it all in on his own, but there have been a few weeks he has not felt well due to a food or an illness and he looses interest in eating and drinking. So we increase the number of ounces of EleCare during those times and hook him up to his feeding pump while he sleeps to keep his calories consistent. We are so thankful for the peace of mind his tube give us when he doesn't feel like eating. 

I can't believe it's been almost ONE year since we got that phone call from Dr. Williams on Friday, March 24, 2011, at 1:30pm. Yes, I still remember the exact time of that life changing phone call. It has certainly been a year of ups and downs full of unexpected twists and turns. But it has been wonderful all at the same time thanks to the many friends we have made along the way from around the country! We have become especially close to a family in Arizona and now consider them quite literally "family"!

Nathan and I flew out to meet our new found "family" and visit with their precious Tyler (Nathan's EoE buddy) and their five other kids the first week in February this year! It was as if we were visiting with old friends, we had an amazing time with them! We are so gracious for their love and support for our family. They have made the last 12 months so much easier for us than they would have been without them! It makes all the difference in the world to be able to talk to someone else who walks in the same shoes you do.

The two sweetest boys ever!

Bath time buddies.

(EleCare) Drinking buddies.

Hiking buddies.

Most days are good days for us all, Nathan has a hard time understanding why he can't eat things that we or other "normal" people eat from time-to-time. It's hurts me terribly to tell him no. But typically I am armed with safe foods for him to try and divert his attention. Last week Nathan's daycare had a class party for St. Patrick's Day. I thought it would have been done and over with before we arrived that afternoon, but it was just beginning as we got there. It was the first time I wasn't prepared with food for Nathan and it was terrible! All of his classmates greeted him by running up to him and telling them about all the green cookies and cupcakes. It took all I had not to grab him and run out of there and head back home. The two year olds in his class meant no harm, and Nathan didn't seem phased, but it made me realize that as this does get easier to get used to living with, it still has a horrible way of sneaking up on me at times and it makes me want to scream! I despise the fact that life revolves around food. I was in a funk the remainder of the evening at work because of how terrible I felt for not having a fun food for Nathan at his class party. I felt like I let Nathan down, and it was a rotten feeling. A radiologist I work with came into the department that night upset over how he and his wife just discovered that their three year old had a skin reaction to peanuts.  He was devastated at how they had to rearrange their grocery shopping and all the snack foods that they have in their house. He went on and on about how it's just not fair for a three year old to be on such a restricted diet by avoiding peanuts. I just sat there in silence and actually had to get up and leave the department. Honestly, I do feel terrible for them and I know it stinks. Food allergies are inconvenient and worse, terrifying if they are life threatening. But that wasn't the night for my sympathy. Typically, I would have handled the situation much better and it wouldn't have gotten to me like it did, but it was just one of my not so good days I guess. Thankfully I don't have many of them like that.

Below are some more photos to catch you up on the last few months. Enjoy!

Nathan's first snow (that he was old enough to play in)!
We kept him up past his bedtime to play in it!

Nathan holding his new best friend, Sterling.

Nathan and his Mini Buddy, BearBear! He has a
feeding tube in his tummy just like Nathan!

  

Nathan clapping after we sang "Happy Birthday!"

Nathan's dairy free, wheat free,
soy free, egg free birthday cake!

Nathan's birthday airplane! He had a blast flying it!

Taking a break from flying!

Peek-a-boo!

Feeding the goats at Maymont.

Such a big boy!

Brushing his teeth and being silly!

Nathan's 2nd Birthday!

Ingredients

Just wanted to share the recipes I used to make Nathan's safe birthday cake and cookies this year! They're free of all the top 8 allergens and were pretty good! I might try switching up some of the "flours" in the future to see if I can make it even better! The sugar cookie recipe was a hit and everyone loved them! So thankful to have alternative options for baking for our sweet boy who deserves a yummy treat like these from time to time! :o) All recipes are from www.eatingwithfoodallergies.com.

Test cookie was a success! Check out that smile!

The Mickey & gang toppers made the cake!

Wheat Free Sugar Cookies

Ingredients:

1/2 c. butter or "safe" margarine (I used Earth Balance dairy-free, soy-free butter)
1/2 c. "safe" shortening (I used Spectrum Organic Butter Flavor palm oil shortening)
3/4 c. sugar

Iced and ready to go!

1 T. egg replacer + 2 T. warm water, whisk together until fluffy
1 tsp. vanilla
1 T. soy or rice milk (I used Rice Dream Vanilla Rice Milk)
2 c. wheat-free all-purpose flour mix
1 tsp. xanthan gum
2 tsp. baking powder
1/4 tsp. salt

Directions:
1) Preheat oven to 375 degrees

2) Combine butter or margarine, shortening and sugar in mixer until creamy; mix in egg replacer, vanilla and milk. In a separate bowl, combine flour, xanthan gum, baking powder and salt. Gradually add flour mixture to the margarine mixture until combined. Cover dough and refrigerate for 1 hour.

3) Remove dough from refrigerator and divide in half. Put half of the dough back in the refrigerator. Place the other half of the dough on a floured surface (rice flour works well). Cover it with a piece of plastic wrap to prevent it from sticking to the rolling pin. Roll it out to about 1/4 inch thickness. Cut out shapes using cookie cutters. Use a small turner or spatula to transfer cut-outs to an ungreased cookie sheet. Repeat with remaining dough.

4) Bake at 375 for 6-8 minutes. Edges should be firm but not browned. Remove from cookie sheet and transfer to cooling racks.

Allergy Free Birthday Cake

Ingredients:
1 cup white rice flour
1/3 cup potato starch
3 tablespoons tapioca starch
1/2 teaspoon xanthan gum
1 cup sugar
1/4 cup cocoa powder
1/2 teaspoon salt
1 teaspoon baking soda
1 teaspoon pure vanilla extract
1 tablespoon vinegar (any variety will do)
5 tablespoons canola oil
1-1/4 cup cold water

Directions:
1) Preheat oven to 350 degrees.

2) Combine the rice flour, potato starch, tapioca starch, xanthan gum, sugar, cocoa powder, salt and baking soda in a mixing bowl. Add the vanilla extract, vinegar, canola oil and water. Mix well.

3) For cake: Pour batter into an ungreased square cake pan. Bake at 350 degrees for 30-35 minutes or until a toothpick inserted in the middle comes out clean.

For cupcakes: Pour batter into a muffin tin with paper liners. Bake at 350 degrees for 20-25 minutes or until a toothpick inserted in the middle of a cupcake comes out clean. Remove from the pan immediately and place on a cooling rack. Makes 12 cupcakes.

Sugar Cookie Frosting

I liked this frosting so much I used it for both the cookies and the cake! Just added a bit more rice milk for the cake so it would stay softer)

Ingredients:4 cups powdered sugar, sifted
1/3 cup shortening (I used Spectrum Organic Butter Flavor palm oil shortening)
4 tablespoons soy or rice milk (I used Rice Dream Vanilla Rice Milk)
1 teaspoon vanilla extract

Directions:1) In large bowl, combine the sugar and shortening until creamy. Mix in milk and vanilla until combined well.
2) If desired, divide frosting into bowls and add your choice of food coloring for decorating.