Home sweet home

We are back!

It was a great week in Ohio at the Cincinnati Children's Hospital and we feel like we are moving in the right direction. His patch test was negative for everything, so we were disappointed. Then, after talking with the docs, we found out only about 10-30% tested have a reaction :( We were bummed but happy with our choice of treatment. So here is where we stand...

* We are removing milk and soy from his diet because those are the top 2 allergens that are most likely the culprit

* We are continuing to exclude corn (but he can have many things again--like corn syrup--because the corn protein is not in them!!). The docs said we were the first they knew of to try this at home (of course!) and the corn did not show up on their test. One reason is that we used real corn and they used a corn flour paste. We are going to try again once his back is not red from the tape and see what happens this time...

* We are discontinuing his medication

* We will go back for a scope and another test for GERD (reflux) in 3-4 months. After that, if he is clear, we will begin to reintroduce one of the eliminated foods.


In looking to take out more foods, milk is going to be the tricky one... No milk, cheese, butter....YIKES!! I had gotten used to making everything from scratch and those were staples in our diet. The soy is not that big of a deal because we had taken out so much before, most of that was oovered. BREAD is my next issue. In Ames there is a natural food store and they have something he can have, so I will be making a little trip soon :)

Otherwise, things are great. We all got a bug as we arrived home last night, so I apologize if this is too short. I will continue to update as we get started on all this! Thank you for all your thoughts and prayers. :)

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!!!