Wednesday, October 26, 2011

Let's start at the beginning.



I am going to write this blog from the prespective of Connor, so when you read the words I, or me just imagine that Connor is telling you about himself. The reason that this blog has come about is that there is so much misconception about the difference between kids with allergies and th condition that Connor has. To fully understand what life is like for a child who has severe allergiie and Eosinophilic Esophagitis (EE from here on out) it is important to go back to where it all began.It is my goal that others who are traveling down this path will find some answers, some understanding and some comfort that though the road is long, the payoff is worth it all. Not a day goes by that I don't hug Connor and appreciate him for the strong and sweet boy he is. Everyone who knows him loves him, and he loves them right back. He is smart, funny and brave. He is also allergic to almost every food in the world. So from here on out you will be reading Connor's story, as I believe Connor would tell it.



I was born as a tiny baby,just over 5 lbs., even though my Mom had gestational Diabetes. The Dr. thought this was strange but never really worried too much about it. From the time I was born I was known for being a very "spitty" baby. I spit up evertime my Mommy fed me, but the Dr.'s said not to worry, just reflux, and gave me some medicine. This continued for 6 months until I started eating Solid foods. My tummy did not like this, I started vomiting up everything I ate. after losing several pounts (remember I was already small) the Dr. decided to run some allergy tests and told my Mommy to cut out dairy from my diet and hers, so she did. This didn't help, in fact I got worse. By the time I was 9 months old I had lost around 4 pounds, and was back to being solely breastfed. This is when my Mom decided it was time to see a special Dr. She loaded my brother (Colin) and I up in our car and we made a really long trip to visit Grandma, and see a Dr. who knew all about tummy problems. After meeting with him, he thought I might have a condition called celiac, which meant no gluten, but he wanted to run a scobe down my throat to look at my insides( an endoscopy). Boy was he surprised when what he found was a rare condition (EE) that he had never seen in person before. At 1st my Mom was so relieved to have a diagnosis, it didn't matter what I had, at least now we knew. As the reality of EE set in though my Mom realized how serious EE can be. The Dr. prescribed a special formula that I loved, and devoured because for so long I had been so hungry! I quickly started gaining weight. The Dr. also sent me for more allergy testing, this time they had to scratch my back to see how I reacted. I was allergic to wheat, soy, dairy, eggs, and peanuts. ok, we could deal with that, just have to watch what he eats my Mom thought. We were lucky enough to find a specialist in EE just 3 hours away, and lucky that my Daddy is a Marine and our insurance paid for the many tests and medicines that were to come for me! When we got back to CA, the specialist told my parents that I could do food trials to see what I could handle, and then every 3 months I would need to come back for an endoscopy. This was a year and a half ago. I have tried chicken, turkey, potatoes, apples, bananas, quinoa, and beef, all with no success. Right now I am on a diet of formula alone while the Dr.'s try to figure out what is next. After more intense allergy testing they have discovered I am allergic to over 25 things, and even if I am not "allergic" that doesn't mean my body will tolerate it. In 2 weeks I will go under anesthesia for the 12th time in 2 years to have another endoscopy and if my esophagus looks good I will get to try lamb!






1 comment:

  1. My adorable little nephew, know that though i have never met you, i love you so much. I pray for you often, and wish there were something i could do to help you feel better. I cant wait to finally meet you, and hug you, and show you how much you are loved by me and all your cousins. You are the bravest, most loveable, happy little boys i know, and lots of big people could learn so much from you.

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