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another child with an autoimmune diagnosis today

Discussion in 'Parents of Children with Type 1' started by dqmomof3, Sep 27, 2012.

  1. dqmomof3

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    My 18 year old son was diagnosed today with eosinophilic esophagitis. Another autoimmune disease :(. He had no food allergies at all until he was a teenager...it's like he grew into them instead of out of them. And now, we have this. Allergists and GI specialists and dieticians will become the new normal. How in the world is my son, who is a freshman in college with no car on campus, ever going to be able to do food elimination diets and allergist and dietician visits? I am exhausted just thinking about it.

    Another new normal...another diagnosis of something to which there is no cure, only treatment. So very frustrating.
     
  2. 22jules

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    I'm so sorry. Hopefully the adjustment will go smoothly.
     
  3. Jenneve93

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    :( I'm so sorry.
     
  4. Jordansmom

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    So sorry to hear it. My non-d children have recently had a number of autoimmune disease dxs as well. I understand how devastating it is. Hang in there. Good luck to you and your son with the adjustment.:cwds:
     
  5. Kaylas mom

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    My 9 year old was just recently dx with this as well. He has EE and EG. Are they putting him on any meds? We just had blood allergy testing on Monday and will be getting the full skin prick testing done soon.
     
  6. mom2Hanna

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    I'm so sorry he is dealing with this
     
  7. Darryl

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    Sorry to hear that, Jennifer.
     
  8. dqmomof3

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    Thanks, everyone. Kayla's Mom, he has another GI appointment on Wednesday, and one with an EoE specialist/allergist on October 16th. She will be testing him for everything. He's on Prilosec two times a day now, and they are discussing a steroid on Wednesday once the biopsy results are back.

    I found a journal article that you might be interested in reading. It explains a lot of things in detail that I didn't know or understand. Here is a link:

    http://www.jacionline.org/article/S0091-6749(11)00373-3/fulltext
     
  9. lisanc

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    I am so sorry!
     
  10. dodgecty

    dodgecty New Member

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    Support for Eosinophilic disorders

    Hi Jennifer
    I am sorry to read of your son's new diagnosis. A friend that I met at CWD brought your message to my attention. Eosinophilic disorders can be a difficult beast to treat and that unknown world can be difficult to navigate. Your son CAN do this:) If you are interested, I can send you in the direction of some strong support as well!

    My daughter Madi is 17 and was dx'd with type 1 diabetes at age 5. At age 13 she was diagnosed with eosinophilic gastroenteritis... had major food restrictions, and then was taken off of all foods, fed an elemental formula through an nj/ng tube for a year.... and has been going through the gruelling process of food trials. She has endoscopies with surgical biopsies every 12 weeks and takes a pelthora of medications. She was then diagnosed with eosinophilic ulcerative colitis and then they added eosinophilic esophagitis most recently. She has high uncharacterized blood eosinophilia, and unfortunately a growing host of auto immune diseases and neurological disorders. You would not ever know this to see her. She remains highly active, positive and is anxiously awaiting college acceptance:) She deals with daily pain and incredible food restrictions (She can have 10 fruits, 8 vegetables, dairy, and is trialing peanuts.) but she does it with a grace and determination I can only admire. I know that your son can do the same. It is not easy on anyone, and I will never pretend that it is. But, it is doable.
    Please let me know if I can help in any way. Where was he diagnosed and where will he receive his care?
    Wendy
     
  11. dqmomof3

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    Hi Wendy! I just started following Madi's CaringBridge page...what an amazing young lady you are raising :). We are headed to Atlanta for a week toward the end of this month for more testing, nutrition counseling, etc.. It is a process! I would love to communicate more with you, though. May I contact you through Madi's page?

    Thanks for your reply. Sorry I didn't see it sooner.
     
  12. denise3099

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    Sorry but welcome to another club. My dd with D also has EE. It was a real pain but they put her on swallowed flovent and it helped a lot. We could never pinpoint the food and never did an elimination diet. Eventually I started weening her off and she is doing well now. She needs another endoscopy soon though.

    Sorry about another dx. :(
     
  13. kirsteng

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    So sorry you have so much on your plate... hugs. :(
     

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