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Friday, February 25, 2011

EE

Grab-N-Go Basket of things my son CAN eat.
Our sons were recently diagnosed with Eosiniphilic Esophagitis. Don't try to pronounce it.....AND whateveryoudo.....do NOT Google search it like I did yesterday. Basically it is an allergic reaction to food that effects your esophagus...it put him in the hospital this past November. Thank goodness my younger son is in remission because I don't know if I could handle two of them at the same time. I am lucky enough to have a good friend who is a dietitian who came up with a plan to help my son eat 4,000 calories a day while observing the list of things (a mile long) that he is allergic to. Fun things like corn, soy, dairy, whey, nuts......He is lucky...some kids with this condition are on a ZERO food diet. I am so thankful to have friends that can help us through this! Insurance does NOT cover dietitians OR the formula that kids have to rely on. I swear I am ready to march on Washington right about now!!!

5 comments:

  1. I can certainly sympathize. I have a ton of foods I am allergic to...and environmental things too...and medicines etc. etc. And I have Barrett's Esophagus, which they called pre-cancerous. I hope your son will be ok and learn all he needs to know to cope with things like I have to. (My oldest daughter also has onion and garlic issues.) It makes it so hard to eat out anywhere. BUT...it is doable and just our lot in life.

    I am sorry for your frustrations...but as I said, I certainly can sympathize.

    Linda @ Truthful Tidbits

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  2. GREAT BLOG DEE.VERY INFORMATIVE.I THINK WE SHOLUD ALL WATCH OUR CHILDREN'S EATING HABBITS.ONE MIGHT AVOID FINDING THERE SELF'S IN THE E.R. IN THE WEE HOURS OF THE NIGHT.HAVING A SICK CHILD AND NOT KNOWING WHATS CAUSING THE ILLNESS CAN BE VERY FRUSTRATING.....SINCERLY TOM FROM TEXAS.1983.

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  3. Dee, I am confident that you will find a way to live with this. Think of how you worked on your time problem. Just know that teenage boys are not so compliant. Once you figure out what is tolerated, I know you will think up all sorts of ways make it palatable. An immune disease also has more than dietary causes, so think about the whole environment in your sons' lives. I would get organic sheets and towels and strip their rooms of any extra things. Good luck, Ann

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  4. I'm glad that you found me. You are in a great location to be dealing with disease! What docs R U seeing? It can be very overwhelming, especially at first.
    Most of the EE kids I know are younger and can't describe their symptoms. I would love to hear how your boys feel physically. What symptoms they have. How are they feeling after changing their diet?
    Look forward to reading more about their journey on your blog.

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  5. I'd like to contact you directly about EE. I wrote a story 10 years ago about a family with 5 sons who have the condition. I'd like to like to put you in touch with the mother, who also has EE.
    Please let me know how to contact you directly. My email is thisfullhouse@gmail.com

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