27

A couple of weeks ago we went in for another round of Bryce's testing. As always he was such a brave kid. We were really hoping for some good news on some of his allergens. As a reminder, he has been peanut, tree nut, sesame, wheat, rice, rye and corn free for a couple of years now. He was coping pretty well with eliminating these foods. However, he was having flare ups more often than we felt he should have been. With school approaching this year, it was time to do some more testing. We really were not prepared for the results we got....

We checked in and were taken back to a room and he got comfortable, the skin prick tests are never pleasant, but he has been through it so many times, he knows what to expect. As usual, Jim and I snuck a look at the trays that they would be using so that we would have some idea as to what was coming up positive. I mean, who can really wait a whole thirty minutes for the test to be completed and the doctor tell us? :) The hope was that either corn or rice would have dropped off, making his diet and life so much easier. It never occurred to us that more than an item or two may be added.

As we sat there in the little room, watching despicable me, things took a turn. His little back begin to get red and swollen in too many spots to count. At the five minute mark, the doctor rushed in and removed several of the test spots, cleaning them off and saying it was too dangerous for him to continue those tests, they were obviously very positive. When she left the room, Jim and I began to compare the trays to the test sites. The biggest spots were our main concerns, we started checking off the things we already knew about. The corn was huge and inflamed, but wait, was that corn? No, it was just so close to another that we had been mistaken, it was actually chicken. We stood shocked, not chicken?! We've never had a meat allergen before and chicken is a staple in Bryce's diet. Another came up, potato, then it just got worse, egg, milk, carrots.... We just couldn't believe what we were seeing.

The doctor returned and starting checking all of the sites, she kept checking things off on her clipboard. I kept wanting to yell, no! Stop! That's enough already! About halfway through her evaluation she leaned down to him and said, 'Oh Bryce, I'm sorry.' I knew at this point that we had been right in our uneducated evaluations. Things were getting ready to change for our little man in a big way, again. She went over the results, answered the few questions we could think of, considering our shocked state, and we checked out.

We loaded the boys in the car and I looked at the sheet in my lap. 27. We had gone from 8 allergens to 27. Jim looked at me and said, 'Keep it together, it will be ok, we will figure it out, be strong for Bryce.' It was simply unbelievable. The week prior we had spent several days at the lake on our annual trip with friends and Bryce had been healthy the whole time we were there. That evening as I read the list off to my girlfriends, they said, but we fed him all those things last week. Oatmeal and eggs for breakfast, smoked chicken and potatoes. He had managed so well, how can it be so different now? Sometimes with allergies, there is no explanation other than, it just is.

I made a few calls, sent a few emails, posted a list of new allergens on Facebook and got to work. The meals  around here have changed drastically in the last couple of weeks, but for the better. Everyone is dealing with his changes well, including Bryce. He does miss potato chips, chicken and oatmeal. But, he has felt much better than he has in a long time. At this point we have cleared our two week healthy mark and began trialing potatoes. Hopefully one of his prior safe foods will be a false positive and he can have some of the things he loves! For now, we keep pushing forward, trialing foods and as always, hoping for the best.

Bryce's food allergens as of July 2013:
Peanuts         Garlic
Tree nuts       Chocolate
Pecan            Carrots
Cashew         Green pea
Almond        Potato
Sesame         Pineapple
Cows milk    Banana
Shrimp          Orange
Egg              Lobster
Corn             Crab
Oat               Catfish
Rice             Tuna
Rye              Chicken
Barley

Doctors, Doctors and more Doctors!

It is that time of year again where we start having all of our check ups. Next Monday we will see our allergist who we all love and is always very helpful. Bryce has had too many flare ups in too short a period of time. We would like to think that because of this crazy weather that Texas has been having, that these have been caused purely by environmental allergens. However, you can't be too safe! We are also happy to hear that our allergist may have found a new GI doctor for us! Our doctor seems to be out of his comfort zone with this rare disease and there are several procedures needing to be done in order to determine Bryce's number of eosinophils and the current state of his colon yet he does not seem to be as interested in doing them as we are. Hopefully we can find someone more specialized in eosinophilic diseases!
That is really all I have to report until next week when test results start coming in. We were very fortunate last weekend to be able to take the boys to their first Texas Rngers game! We have never felt comfortable taking Bryce before, but thanks to a wonderful cousin of mine, we were able to enjoy the game from a private suite with air conditioning and where we were able to take in Bryce's safe foods! The boys had a blast and it was so nice to see Bryce enjoying himself at a public event! Until next week, here are some pictures of the boys....

Rangers Game

Post win Fireworks!

Allergy Awareness

I opened my blogger site today and was shocked to see how long it had been since I last posted. Then I look at the six, yes SIX articles sitting in my draft folder and think, oh there's the problem. If you know me, you know that I am a little busy :) Three busy, crazy boys and a very busy husband will do that to you! Below is a post that I had started not long ago about an issue that I never would have imagined would be a real issue, unfortunately it is....I will do better to keep the updates coming! Or I will try ;) 

Bryce and cousin Payton

I recently read an article on 'food bullying,' and found it quite interesting. We have fortunately never had an issue with this and hope that we never do. However, it did make me think about how we are educating, not just Bryce, but all of our children on the seriousness of food allergies and their consequences. I believe that our children have simply learned over time how to deal with these issues. We do occasionally have to say, 'We haven't had this before but Bryce cannot have it, so please wash your hands when you're done.' But, we never really sit down and have a talk about it.

After reading this article, I decided maybe we should. Maybe all parents should. It is second nature to me to be asked by the other children in our lives whether or not Bryce can eat something, if he can be around it. For most this is not the case, yet when you ask someone if their child has any allergies they may say no, but then they remember 'But, my sisters/cousins/friends daughter does!' The number of children being affected by life threatening allergies is staggering and continues to grow. It is so simple for a child to share their food, not wash their hands, any number of things that would allow the allergen to reach your child. They now have classrooms that are peanut free, assigned seats in the cafeteria, and other such rules to protect the children with allergies. On top of this we should be teaching our kids why they are doing these things, what could happen if there was contact.

I began to read the comments on the article. My thinking behind this was that I might find some fun and creative ideas for awareness that i could share with everyone. However, I was SHOCKED to see the number of negative posts. People asking, why should I have to send something else with my child for lunch simply to accommodate yours? Peanut butter is cheap and easy, your child should just sit by themselves. This was deeply upsetting and surprising to me. I left the article feeling extremely angry and frustrated, and even more encouraged to teach my children and those around me to be supportive and accepting of other people's needs!

So I ask you all to be the kind, educated parent and pass it along to your children. Take the time to gain knowledge and be helpful and supportive to those around you! To start you off....I have included a couple of links below to some very helpful and informative websites for allergy awareness, enjoy!

-http://www.foodallergy.org/section/education
-http://www.kidswithfoodallergies.org/resourcesnew.php

-http://www.kidswithfoodallergies.org/resourcesnew.

5 Long days....

My little Bryce in pain Sunday night

 It has been awhile since we had a long period of time that Bryce was unable to go 'potty'.....until this week. Over the past five days Bryce's condition began to decline. He experienced allergies getting more severe as each day went on. On Sunday night, we were up all night, terrible allergies and excruciating stomach pain. His crying kept the whole house up and come Monday we laid around all day. I soon realized that we would have no choice but to put him back on his medicine, something I try to avoid at all costs, but his suffering became unbearable. Monday evening he had his first dose and a second again this morning. Though he slept all night last night it was obvious he was still in a lot of pain. Shortly after breakfast he went running to the bathroom, and was able to go!
The strange thing is we have been home since the symptoms started. So did he sneak something? Maybe, but I hadn't noticed it and usually stay on top of him pretty well. Have airborne allergans taken their toll? I am guessing this is the culprit. Our street has been torn up for construction and between the dust and this wonderful Texas weather, no one can stay well.
But for today he is happy again! As usual we will take it day by day. Hopefully it will be another several months before he has to go through this again, or maybe he won't! Hey, a mom can always hope :)

The after,
taken a mere 10 minutes after the previous picture

The before picture

The small circle stickers are for him being able to pee,
the larger fire truck is him pooping, it was his first one in five days :)

Venting...

I sit here at the computer today, having just finished my last post on Bryce and our new pups. I started to scan the internet, as I all too often do, for more information on his condition. Where did it come from? How long have people known about it? Why is there no one else in my area I can discuss it with? And why our child?

Honestly, sometimes I feel quite alone in the struggle. I am fully aware this is selfish on my part. We have a wonderful families, both mine and my husbands. Friends that go out of their way to make sure Bryce has a meal he can eat and enjoy when we go to their houses, birthday parties or on vacation, who quiz me on what new products I am finding so they can have them on hand at their homes as well. Friends and family who will even ask their child to wait on eating something they know is especially painful for Bryce to watch. For the support of these people, I am eternally grateful. However, as his mother, I feel I can never know enough, and I want to know it all. Unfortunatly, not only am I in the dark, it seems as if the doctors are as well.

As I begin to read the stories of other parents with children of similar diseases and of varying severity, I am struck my how lucky we really are. I suppose I am using this post as an outlet for my own emotional struggle through this and am not sure that I will ever even post this, but perhaps I will feel brave one day and do so.

I often search out the keywords involved in Bryce's disease. Eosinophils, eosinophilic, colon, colitis, lymphonodular hyperplasia. Usually to find very little information. Mostly medical studies and reports that as a 30 year old stay at home mom with two years of college, I shouldn't be able to read, but are making more and more sense.  There are a couple of wonderful food allergy sites, centralized around children. There is the American Partnership for Eosinophilic Disorders, MakingContact.org a site based out of the UK helping parents to find others in their situation and there is the Livestrong website which I am convinced covers any and all imaginable diseases. But, more often than not I find a blog, a post, a facebook page of a family struggling to keep their child healthy, happy, sometimes even alive. It's these times when I stop and say a little prayer for the good health that Bryce is currently in. Against my better judgment, I allow myself to think about what could have been had Jim and I not pushed forward with our crusade to diagnose him. Which has led me here.

I often write wonderful stories about Bryce being able to try something new, how he is gaining weight and progressing. But, there is another side to this struggle that while we are fortunate to have largely not experienced, is never far from my mind. I read a story just this morning of a 3 year old little girl who had just started an elemental diet via feeding tube. At breakfast she had told her mother she wanted a new mommy who was nice and that she hated her. I have had my ups and downs with Bryce, there have been many many days that he hasn't liked me much. But how you go through taking away all normal food from a child, knowing it will keep them alive, and try to explain that...I have no idea. I read multiple stories of children suffering from EC along side diseases I have never even heard of. Parents blogging from hospital rooms they had been in for a month.  More often than not, I find in my reading that children suffering also have siblings with varying cases of gastrointestinal issues, mothers having listed them...Son, 4 eosinophilic colitis, daughter 2 eosinophiloc esophogitis, etc...
This is a constant worry of mine. Why are so many cases of Eosinophilic Disorders affecting siblings? I wonder if my other sons with face these. I wonder if there is some genetic marker that my husband and or I are carrying that have led us here.

I am concerned for Bryce's long term health. If the question is posed to a healthcare professional the answer is always something to the effect of... This condition is so rare, that we are not only unsure of the natural history of it but also cannot predict the liklihood of the progression to other gastrointestinal diseases. Long term studies on the similar disease, eosinophilic esophogitis have shown decreasing quality of life, reoccurring symptoms and abnormal behavior socially during a 15 year time span. But such studies do not even exist yet for eosinophilic colitis.

We are currently off of all medications. It is often a struggle to get Bryce to eat and certainly a struggle to maintain a balanced diet that allows him to thrive and gain weight. But we are managing it, will he be more likely to develop Crohn's disease or ulcerative colitis? I would guess based on the condition he has, but there is no proof one way or another. Will his quality of life be adequate? Will he socially thrive? We are doing everything in our power to help him be as 'normal' a kid as possible. And for those of you that know him, the social aspect isn't an issue for him :) Unfortunately our learning experience will be just that for the doctors as well.

For now we can continue to pray that things continually improve or at least stay the same for Bryce. He has not been hospitalized for excessive periods of time. We have often done elimination diets, but he is not totally food intolerant. We have never had to feed him through a tube. I hope as well, that one day soon more will be known about these Eosinophilic Disorders and that in time, children who are suffering far worse than mine can find some peace and a nice hot meal, not sent through a tube.

Our new additions...

Toby and Lex

I am very happy to announce that about a month ago, we welcomed a new addition to the family....Actually....TWO new additions! No, we didn't have twins :) We have adopted two dogs, Toby and Lexy (aka Lex Luthor).

Sometime ago, due to Bryce's allergies, we made the extremely difficult decision to adopt out our Corgi, Bear. Bear had been with us since before our oldest, James, was born. In fact, Bear had been born on our exact wedding anniversary. He was a beloved member of the family and the night he left, I wasn't able to leave our bedroom. Even knowing that he was going to a good family, and it was the right thing for my child, I felt like I was failing him in some way and taking away my children's friend.

Bryce's health improved drastically and immediately. Mere days after his departure, my sister came by the house. At some point in the afternoon she reached in her pocket and found a tissue. She said, I have been here for two hours and have not had to use this on Bryce one time!

Time went by and we acquired fish, a lizard, another lizard, but nothing compared. Without even seriously discussing it, my husband and I slowly began looking into hypoallergenic breeds. We talked to our allergist, did all of our research online, but we were still skeptical. As fate would have it, on a hot Saturday afternoon we sat watching my husband, his dad and brothers race at Texas Motor Speedway. Just down the row from us a woman reached into her bag and pulled out a tiny Yorkie.

The children immediately flocked to it. I found myself telling her of our situation and recent research. She went on to say that she also suffered from severe allergies and had chosen this little guy due to them. Bryce hovered at the back of his group of brothers and cousins. I asked the others to step aside and give Bryce a turn. I said go ahead Bryce, pet the puppy. He looked at me as if I had just slapped him. But after some convincing and assurance that I thought he would be alright, he began to pet the puppy and he was fine.

As his Dad came off the racetrack he was bombarded by a four year old little boy, more excited than I had ever seen him. Was Bryce thrilled to have just watched his Dad drive behind the wheel of Jeff Gordon's race car? No! He had petted a dog and hadn't sneezed or anything Dad!!!

So...the hunt was on. Yorkie, we knew that worked.....Puppy, so it would be better with 3 little boys.....Not to spend a fortune, ok that one was a bit harder. Everything I found online was scam after scam. Pay the shipping and we will send you a puppy today for free! Um, no thanks.

Finally I spotted a picture, two adorable pups and I was drawn to them. I called, explained the situation and agreed to a meeting to see if Bryce had any reaction. The next call I had to make was to my husband at work. It went something like this. Hey would we consider a 3 year old dog that was good with kids? Sure, I guess. Ok, great I am going to meet her tomorrow to see how Bryce does. Great, hey send me a picture. So I did and immediately got a response back, which one is it? Well, honey, you see that's the catch, they are brother and sister and only come together. At this point our conversation moved from texts to an actual phone call. I think he was a bit surprised :) Yes, that's right, I had moved from NO DOGS, to one puppy, to a PAIR of three year old dogs.

We met the next day and it was love at first sight. Bryce did great and there was no doubt that he was not going to have any sort of reaction to them. He regularly rolls on the floor and cuddles with them. Every morning as he gets up and every evening as he goes to bed it makes my heart happy to hear him tell them how much he loves them :)

We thought that providing our boys the experience of having a dog was hopeless and now we have two that we couldn't imagine not being a part of our family.

Another milestone achieved for Bryce and two other little boys who are pretty happy :)

A little time away...

After a very busy start to the summer and many, many hours put in by my husband at work, we decided to escape :)
Escaping is easy right? You grab your two best couple friends, their kiddos and you make a break for the lake. All you have to pack is clothes, swimsuits, toiletries and towels for us and the five kids. Sleeping bags in case the bunks don't work out as planned, pillows... because really, who wants to use someone else's? Load the boat, jet skis, life vests, floating island, tubes, ropes, air compressor, smoker, extra propane, a million bags of ice, water bottles, sunscreen, fishing poles and gear..... ok...wait, why did we think this vacation house on the lake was a good idea?!
Actually, it was a great idea. We were able to finally relax for the first time in a long time. There were early mornings with the kiddos, but when you have nothing to do but lounge on the lake all day, no one really cares. The kids played in the water for hours on end. There was no nap time, although bath time and bedtime were reasonable every night, the adults needed our time too :) After dark there were drinks, games and guitars, couldn't have been better!

But, this wouldn't be my normal blog without an update on Bryce. He had a wonderful time! He had his own special ribs on the smoker with no seasoning, and enjoyed fresh fruit for snacks on the boat. It was so relaxing to be surrounded by friends who knew what he could and couldn't eat and made certain not to bring things that are dangerous for him.

Our one big breakthrough during this trip was S'mores night. Something that I have always dreaded. This time I was determined to make it work. I had 'special' cookies down and have recently discovered how easy  homemade marshmallows are! They come out a little different than the package kind, as do all things homemade, but they were still a hit! Instead of Hershey's bar for the chocolate I took Sugar Free Chocolate Icing and left it in the fridge until right before I needed it. This way it was still cold and hard when I smeared it on the cookie and added a nice toasted homemade marshmallow. The picture says it all..... :)