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.
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