Today was an eventful day. We met with a new allergist who is somewhat familiar with Eosinophilic Gastrointestinal Disorders (EGID). EGID is pretty rare, and as a newly identified disease (1970s), we are learning that it is not easy to find medical professionals who are familiar with the unique issues inherent in this condition, or the treatment options. It is estimated that approximately 4 in 10,000 children, and and 1 in 10,000 adults suffer from EGID. Treatment is complicated and often only somewhat successful, so many families choose to travel to a specialized hospital in Denver, Chicago, or Cinncinati for treatment.
I was nervous about this appointment. There was a lot to cover, and so much we are still trying to understand. I didn't want to miss something important. But the doctor and his staff were wonderful. They explained everything well, and gave Andy and I plenty of time to ask questions. And despite my fatigue, a case of bronchitis, and a mind overwhelmed with all the research I've been doing, God blessed me with the ability to think clearly and ask a lot of important questions. We were there for three hours!
The skin prick test (SPT) identified fifteen new foods that Keandre is allergic to, up from the four foods that he was allergic to when we did the SPT in June of 2010. Oh, my. Still trying to wrap my mind around that! And unfortunately, the SPT is only 30% effective -- meaning it may catch only 30% of Keandre's allergies, and definitely only the ones he is hypersensitive to and reacts to immediately. Next week, we will start patch testing, which checks for delayed reactions. We are likely to identify even more foods that way.
Despite this bad news, we are hopeful. God is in this with us. He is answering our prayers! We prayed for answers, and a next step in this journey, and He we are well on our way.
My next post will be list of the foods Keandre can no longer eat. And a chance for you, our family and friends, to help me come up with a list of foods he CAN eat. :)
Spring Break 2014
10 years ago
3 comments:
Hugs, that is a lot to have on your plate! I know when we did IgG and IgE testing with Conner, those delayed reactions showed up STRONG. Sigh. I'll help you come up with foods he can eat :).
What allergist did you see?
Hey Jenny,
We saw Dr. Mark Rose. A new friend I connected with through a EE Yahoo group also sees him, so that was nice to hear. Who do you take E to?
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