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Our new addition :)

Wow...time flies

I cannot believe I haven't updated this for so long! I guess with Facebook, I figure no one looks here. But now that I am a SAHM, one of my goals is to support EE more, so I will work on this...

Since the last post...
We have made 2 more trips back to Ohio. Last summer (2010) we spent a night at the hospital to rule out reflux for good. After they scoped him that afternoon, they inserted an NG tube (in his nose) to monitor the level of acid he was having at meals, etc. We never believed that he had this, so were not surprised to find nothing out from this test. His scope that day was negative for eosinophils, which was great because we had cut out milk, soy and corn at that point and it was working.

We went back again this summer for another scope. 3 months before the appointment, we reintroduced soy so that we could rule that out. It was a very quick trip with dad and grandpa because I was 35 weeks pregnant at that point! The scope was CLEAN again, so we ruled out soy.

Where are we now?
Well, we are continuing the milk and corn-free diets. IF we want, we can reintroduce one of them and then 3 months later go back for another scope OR we can wait a few years to go back for a check-up and keep on keeping on. At this point, Andy has started kindergarten, so we are going to wait until closer to summer to make a decision. We are confident it is both of these foods, so we continue on.

My hope is that we could find a level of milk or corn that is tolerable for Andy. Milk is a HARD allergy to avoid. I have found ways to work around most foods, but CHEESE is impossible to find. He wants pizza so badly, but I cannot find cheese that is like cheese (taste, texture, etc.). But we did find some awesome ice cream treats that he LOVES!

One of my goals is to list foods (brands) that he can have because that was the most challenging part of all this. Now that we know, we are good to go (most days!).
Check back soon!!

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!!!

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.

Eosinophilic esophagitis -- huh???

It took awhile for me to be able to pronounce, but after doing some research EE made all the sense in the world with our experiences. Basically, our little guy was having an allergic reaction in his esphogus. The allergen was causing his esphagus to become irritated and inflamed, which caused it to be less flexible for the food to travel down. Then when he ate, the food would get "stuck" and vomiting was the solution. This is obviously in my own words, so for more specific info visit: http://www.mayoclinic.org/eosinophilic-esophagitis/ or http://www.chop.edu/consumer/jsp/division/generic.jsp?id=83825 .

EE is a fairly new concept, so there is not a ton of information out there. We discovered doctors weren't that familiar either. So, now we had a diagnosis, but not a cause. Allergies can range from environmental to food related and everywhere in between. The GI doc started him on a treatment with an asthma inhaler. He swallowed 2 puffs twice each day. This was intended to coat the esphagus, therefore blocking the contact of the allergen. He started with an 8 week treatment and within days, no vomiting! His appetite returned and he finally began gaining weight!

How it all began...

It all began shortly after our little guy turned 1. He was growing just fine, but started vomiting during his meals. It would happen several times a week, but no fever or other symptoms. We spoke to the doctors, but we weren't too concerned at this point. Our daughter was a BIG spitter-upper when she was born, so this wasn't such a big deal for us...

As he closed in on his 2nd birthday, we started to get more concerned. He was so skinny and long and the vomiting was more frequent. After a little pushing with the docs, we discovered that he was also WAY behind on his growth chart (he had been charted on the girl's chart--which can vary a lot!). So after discovering this, we found out he was not even on the weight chart! This drew concern from the docs; we were asked to increase his calorie intake, the did many blood and stool tests, then we were referred to a Pediatric GI...

The GI meeting went well, although the doc felt he wasn't sick enough to warrant further invasive testing. We scheduled an appointment for closer to his bday for a weight check and to debrief how the calorie upping was going.

Upon meeting back with the GI doc, we discovered virtually no weight gain (which also meant he was falling further off the growth chart...). We decided to allow the doc to perform a scope as this was the only way to get some possible answers.

The morning of the scope was NOT fun. He had to be put out, plus they wanted to do some upper GI x-rays after the scope. The procedure didn't take too long and he came through it better than his mom :) He did not, however, cooperate with the x-rays and was not willing to swallow the contrast. The scope did lead us to some answers, though, and we were introduced to eosinophilic esophagitis.

There is corn in that??

The day we realized our little guy had a corn allergy was a relief and terrorizing all at the same time! We finally had some answers and hoped that he would start to thrive, but we knew it would be an uphill battle. I am hoping this can be a spot to offer some suggestions to anyone else in our shoes and to have a place to hear other's ideas on living with corn allergies!