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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Friday, June 8, 2012

Disclaimer

I've said it before but I wanted to say it again,

Just because John reacted to the list of foods below and did not react to the other foods we tested for does NOT mean that the other foods are "safe". We will not know what is safe and what is not until John literally ingests them. It is NEVER okay to give my son ANY food with out asking me or Doug first.


One example is Corn. John reacted to corn on his first allergy test when he was 11 months old. He did NOT react to it this time. When John eats anything with corn starch or corn syrup in it, like dumdums suckers, Neocate Chocolate, and Neocate Splash, he throws up and starts gagging and coughing. Classic EoE symptoms. 
He IS allergic to corn. 
It just goes to show how weird these EoE kids test and how unpredictable this disease is.
Regardless, we are super excited about starting food trials. It's going to be nerve wracking and probably a little emotional but we are more than ready. So bring it on!! 

4 comments:

  1. Hi, I was wondering which G.I. dr and allergist you use? and how your son got the diagnosis. My G.I. dr did an endoscopy and took biopsies and we later found out that she never tested for EOS, even though my son shows all symptoms and many other doctors agree with me.We live in chicago and we're trying to find an educated dr in this area.

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    Replies
    1. Cincinnati had Good clinic. Also, I don't know where your experience is, but Lurie Children's Hospital has an eoe clinic.

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  2. Our son was diagnosed by a GI specialist at Georgia Medical College in Augusta GA. They did an endoscopy and took a biopsy from different parts of his esophagus, stomach, and intestines. He now sees a GI specialist in Greenville, SC. At the Greenville Children's Hospital and an allergist at Carolina Allergy and Asthma in Greenwood SC. If you go to www.apfed.com you can search for Drs familiar with EGIDs near you. I hope this helps! Good luck and thanks for reading!

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  3. Below is a list from APFED of 7 self-reporting facilities in the Chicago area that treat EGIDs:

    [For any of these, I do not know if your son must be diagnosed first or not.. We considered travelling to Cincinnati Children's Center for Eosinophilic Disorders and the admissions paperwork requested when the patient was diagnosed with EOS and what the concentration of eosinophils was.]


    Northwestern Medical Faculty Foundation
    676 N. ST CLAIR STREETSUITE 1400, IL
    (312) 725-6175

    Nirmala Gonsalves, MD - Northwestern University- The Fe...
    675 N. ST CLAIRE, SUITE 17-250, IL
    (312) 695-5620

    Food Allergy Center Of Illinois
    690 E TERRA COTTA AVE STE C, IL
    (847) 888-8802

    Food Allergy Center Of Illinois
    1530 N RANDALL ROAD STE 222 ELGIN, IL 60123
    (847) 888-8802

    Food Allergy Center Of Illinois
    350 SURRYSE ROAD STE 100, IL
    (847) 888-8802

    Ikuo Hirano, M.D., Northwestern University School Of Me...
    NORTHWESTERN MEMORIAL FACULTY FOUNDATION, IL
    (312) 695-5620

    Allergy & Asthma Physicians
    908 N ELM STREET SUITE 205, HINSDALE, IL 60521
    (630) 455-0456

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