Virg Posted October 5, 2012 Share Posted October 5, 2012 (edited) *Son just diagnosed with EoE! Anyone have any experiences to share? ~Whoops, wasn't a question lol I know he was diagnosed DS12 was just diagnosed with EoE three weeks ago. In every biopsy the eosinophils were over 100 and there is scarring in his esophagus. A week later all of his allergy testing (skin and blood) came back negative. This didn't particularly surprise our allergist as his twin has an autoimmune allergy disorder. They have started him on the 6-food elimination diet. In the last three weeks he has lost 6 pounds. We saw a nutritionist and she helped us find some more fats to give him to try to keep his weight up. His weight has been steady for the last few days. We have also added in some Neocate powder into different foods to try to boost his calorie intake. However, it doesn't look like our insurance will pay for it at this point and we can't afford it without the insurance paying for it. I know he is definitely not a worst case, but I feel overwhelmed at this moment. He was my only healthy child. I am a realist and would love to hear someone else's story. I would like to know what to expect and to hear that we aren't alone in this. :) Hopefully someone can share! Edited October 5, 2012 by ds4159 Quote Link to comment Share on other sites More sharing options...
Tammi K Posted October 5, 2012 Share Posted October 5, 2012 My husband was diagnoses a few months ago, our good friend's son was diagnosed just a few weeks ago and I have a biopsy scheduled for next week to see how bad things are. It isn't as uncommon as you might think. :grouphug: Hugs to your ds as you adjust. Quote Link to comment Share on other sites More sharing options...
Virg Posted October 5, 2012 Author Share Posted October 5, 2012 Thank you for responding! Quote Link to comment Share on other sites More sharing options...
Random Posted October 5, 2012 Share Posted October 5, 2012 I'm sorry about the dx. APFED is good for information, and so is Cincinnati Children's Hospital. EE is one of those diseases where you are going to have to advocate for your child. You'll really need to be educated about what the treatment options are. Best wishes to you and your son! :grouphug: Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 5, 2012 Share Posted October 5, 2012 I'm so sorry. I can totally related to the "the one healthy child" feeling. I don't know too much about EE, but I have a friend whose son was in a very acute situation with this. The good news is that it resolved in a rather short time and he's doing fine. They don't know why it happened and while it was scary, the outcome was good. They did put him on a gluten free diet and there were relatives with celiac. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted October 5, 2012 Share Posted October 5, 2012 Check out the "kids with food allergies" support board (their site changed and i dont have the link). They have a eos disorders sub forum, formula feeding, insurance help, etc. They are to all food issues, what this board is to homeschooling. They are all wonderful. Quote Link to comment Share on other sites More sharing options...
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