Ohio!

We are here!

It was a great trip in and we had a nice stop in Bloomington, IL with Brian's brother and family. What a perfect halfway point to have! The only glitches: bathrooms and time...We stopped 1 time in the 5 hour drive to IL. When we left there for Ohio, the kids had to stop for bathroom breaks a LOT! Then we got close to the city (within 20 miles) and the GPS said we still had an hour.... We were very confused until we realized that we changed time zones somewhere! Missed that one in all my planning--nice! So, for future reference, the time change happens near the Indiana/Illinois border :)

Our hotel is great and close to everything....

Monday we spent awhile with the GI doctor, Dr. Franciosi. He was a great fit for us. We talked for over an hour! He took Andy's history and explained his thinking about what might work best. We decided not to do the scope that afternoon because it was so soon after the last and the medication he is taking probably is not a strong enough dosage to make a healing impact. (He is on 44 mcg -2 puffs/2 times per day. Apparently, the LOWEST dose he should have to make an impact is 110 2/2 times per day--way off!) It was great to talk to someone who truly understands this disease and we are planning to discontinue seeing our other GI and being treated for this here in Cincinnati.

Tuesday was allergy day. We spent a long while at the hospital and also talked for awhile with the allergist. (All of the docs here want to know Andy's full story and EE history!) They needed to do a prick test for allergies and because they also are doing the patch test, they did the pricks on his arms. He was such a trooper as they tested 45 separate allergens up and down his arms!! After nothing showed up, they applied the patch test to his back and sent us on our way. The patch tests consists of 30 foods on dime-sized aluminum disks on his back. There is surgical tape over top to keep it on tightly. Tomorrow at 1 we remove the patches and we visit with the allergy doc on Friday to create a plan.

Tomorrow we meet with the GI again to talk and on Friday the allergist and dietician. Looks like we will be taking out the big 6 allergens: wheat, milk, soy, fish, nuts and eggs. (and I thought corn was bad!!!) We'll see after Friday!


So...some questions are answered and we have decided to stay under the care of the staff here. What does that mean? Several trips here each year. That will be hard, but so worth it! We are frustrated with all the misinformation we recieved and are very grateful that Andy is new in this diagnosis so we can truly get things figured out before more damage is done.

Thanks for all your thoughts and prayers. We'll update again soon!!

What to expect in Ohio?

People have asked how things are going as we prepare. Good!! It is challenging packing for all of us for the week and bringing food items too. Our hotel will have a kitchenette, so that should help. But, I am not sure what stores are in the area, so we need to make sure to have things for Andy while we are there. Brian assured me he (and the rest of us) will not starve, so I am chilling out a little on that front (only a little, though!).

Also, several people have asked what will happen when we go for our visit, so here is a run-down (as I understand it at least!).

Monday - We visit with the GI team and we talk about what has been going on. They will do an upper GI scope (this will be his third!) and later that day a bone scan. I really do not love the part about putting him out, but we assume they will do biopsies again and gather new data since he has been back on the medicine for enough time that it should show a difference. The bone scan is to get baseline data because his medication is a swallowed steroid and they want to see where he is at. This should not be painful, but I am a little anxious about how long he will have to stay still. His is very active little guy!

Tuesday - We visit the allergist and they will apply the REAL patch testing. This will be slightly (ha ha ha) more controlled than our kitchen testing at home. He will have several large stickers on his back with food under them. I think there are 30 things they test for. He will have it on his back for 48 hours (at least).

Wednesday and Thursday - We meet with other members of the team and also have the follow-up with the GI doc once the biopsy results are in.

Friday - Is the "big" day in my mind. They will "read" the allergy test and then we will meet with the dietician/nutritionist about what his diet restrictions will be.

Crossing our fingers for some ANSWERS very soon :)

Off to OHIO

We are so excited to say that we are going to Ohio! (Don't take it personally, Ohio, but I never thought I'd say that!) After the scope in January, it was again confirmed that Andy has eosinophilic esophagitis. He is on the Flovent inhaler again, and life is good---he eats like a champ, sleeps like a rock and has a TON of energy. It is wonderful to see and sad to think about how different he is when he is feeling badly. We got all of our paperwork submitted and he was approved for the EE center there. We were hoping for a trip during spring break, but they were full. Even better, they have an opening sooner!! We can hardly wait!!!

So, why Cincinatti, you may wonder? There are 3 main centers for research for EE in the US: Denver, Philadelphia and Cincinatti. I spoke with each of the centers and felt that Cincinatti would be a good fit. Brian's parents are able to join us and will help with Kate while we are at the hospital with Andy, so we are truly thankful for that!

We will be there for a full week. They will do several tests including another scope, a bone scan (to get a baseline for the impact of the Flovent-steroid- he takes for this) and REAL patch allergy testing. We hope to finish the week with ANSWERS!!!

Thank you for all your thoughts and prayers--keep them coming and I will update soon after our trip! Cincinatti, here we come!!!

Where are we now?

So, it has been over a year since Andy’s diagnosis. We have removed virtually ALL corn and its derivatives from his diet. I have grown quite accustomed to making nearly everything from scratch (bread, dinner, lunch, breakfast…). His birthday was a challenge, but I did find corn-free powdered sugar and he had an awesome Diego/dinosaur cake. We do not go out to eat and the organic/natural stores are saving me even more work! Andy is gaining weight (in the 10-20th percentile!!!) and we have adjusted well to the healthier lifestyle. Things had been going well since the summer and his last Flovent treatment, until October.

In October one of my fears came to life. Andy got sick. Not the vomiting we were used to, but feverish sick. His temperature rose over a few hours time and rarely dropped below 100 for 6 straight days. Why was this so bad? Children’s Tylenol and Motrin are loaded with corn syrup. But, we knew the alternative of high fevers was not the route we wanted to take, so medicine it was. I felt as though I was poisoning him with each dose, but we made it through the week (finally!)

Well, it didn’t take too long for all that to catch up with us. By the middle of November he was vomiting weekly again and December was worse. This time around, though, Andy understood more of what was going on. He would say his throat hurt as he was eating and then a moment later told us he needed to throw up. After 2 times over the holiday weekend out of town, we called in our final refill for the Flovent and contacted our GI doctor after the weekend.

After talking with the GI’s office, we were able to set up another scope for this upcoming week. And, after the relapse in November, I began contacting EE centers for more information. My concern is that I don’t know how to manage this disease. We think it is corn because of our “testing” but is it really?? There is so much unknown about all this and we feel like meeting with people who specialize in all this will help Andy’s quality of life (now and in the long-term). So many things are making sense as we look back. The red cheeks he has in ALL of his baby pics were surely due to a food allergy. The rough nights of sleep are certainly connected to his episodes of vomiting.

Our greatest hope now: find more answers. Is it a corn allergy? If yes, what are we missing? Or was it just the medicines for the fever for a week? If not corn, then what?

As I said, Andy has been a trooper through all this. He knows corn makes his belly “icky.” He no longer questions why he can’t eat most things at the store. He didn’t complain on Halloween or his birthday or the holidays when he couldn’t have candy with the other kids. He is an amazing little guy and we know we will get him through this. Fingers crossed for next week!!

Corn Allergy...now what?

So once we discovered all of this right before around Christmas last year, we were a little overwhelmed. I didn't worry too much at first, I just thought no more corn with dinner and probably no popcorn. He loved those 2 things so much, so having them as often as we did surely wasn't helping the situation...After some online research, we found a different story.

Corn is in EVERYTHING!!! I was SHOCKED when I began to read The Corn-Free Cookbook & Survival Guide by Steele and Knott (which is a wonderful resource!). Corn, or corn derivatives, are a staple in most all processed foods. High fructose corn syrup and corn starch are in a crazy amount of foods. I met with a dietician at our local grocery store and she gave me some ideas on the organic items and allergy-free foods, but corn is such a prevalent "natural" ingredient, that very few items work for us.

As we were nearing the end of his 2nd treatment, we began to eliminate all corn products from our diet. This was a huge undertaking and involved a complete overhaul of our pantry, fridge and freezer. We started conservatively and took out all "corn" ingredients (corn syrup, starch, meal, etc.). Our little guy did better, but within a few weeks, the vomiting returned. After consulting with the GI doc, we agreed to another round of treatments as we worked to get out all of the corn possible. That list is MUCH more cumbersome and includes derivatives of corn like: dextrose, fructose, citric acid and caramel. There is a comprehensive list in the book or on websites like cornallergen.com .

"Experimental" testing at home...

My hubby and the allergist discussed some experimental testing going on around the country with EE. It essentially is an allergy test specifically for it. Patients would have a "typical" allergy test on his/her back, except that instead of a scratch, actual pieces of the allergen were placed on the back and left there for 48 hours. After that time, the bandages were removed and "read" for an allergy. The doc explained how this would probably become common practice around the nation in several years once the FDA approved. That was all we needed to hear and that night, we got to work.

Over the next week, we had cycles of food "tests" all over our little guy's back. Each time was the same: we gave him a bath, got out the foods, placed the bandages over them and labeled each item. We started with the list of most common allergens, but no results. We moved onto his favorite foods that we had often, and still nothing. Just as he was about to complete his 2nd round of inhaler treatment, we tried one more round. As we removed the bandages that final time, we were shocked to find the spot where a single cooked kernel of frozen corn had been was red and irritated. We had a winner...

First round of meds down, sick again...

We were so thrilled to have him gaining weight again and see his development skills flourish, but we knew we had to get to the bottom of the cause of his allergy. The docs suggested that few kids relapsed after a course of the inhaler treatment, so we did not change his diet. Within a week of finishing the treatment, the vomiting returned. We also made a connection with how red his cheeks were. There was a big possibility it was all connected, but to what we weren't sure...

After his relapse, we pushed for a visit with the Peds allergist. This testing came up negative to all, but after talking with the doc, we were not surprised. As he put it, EE is not like other food allergies where someone might have contact or ingest it and break out or worse. EE is an allergy that is a reaction after being exposed over a period of time. He likened it to a nickel allergy when someone wears jewelry and only breaks out after continuous wear over several days or more. Our allergy was something that was a continuous exposure over time. That was going to me much more tricky to narrow down.