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Patience

11-08-2008 - 04:07 am

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by , 11-08-2008 at 03:07 AM (321 Views)
cameronhas 48,XXXY syndrome. Which is where he was born with two extra female chromosomes. Everything about him is all boy I just contain two extra chromosomes. On top of that he had a PDA(Patent Ductus Arteriosus) in May of 2005. He also suffers from severe Eczema and just recently found out he is allergic to Peanuts, Milk, eggs, dogs, cats, wheat, walnuts, soy. We are going to be seeing a gastroenterologist since he is having so many other issues. he is on Neocate JRr. due to severe allergies and we are struggling at keeping his weight up. so we hope before too long we know what is causing this and he can be over the majority of his issues. He was recently diagnosed with Job's Syndrome and he gets reoccuring boils and mrsa infections on his skin. He gets repeated infections in his lungs and his eczema is horrible and he has numerous food allergies. Living with a child with Hyper IGE and hypereosinophilia and jobs syndrome where to turn next..im baffled..Job's syndrome is very rare and he has his followup appointment with his pediatrician on wednesdya and he sees a different dermatologist on the 9th of dec keep us in your prayers ladies..
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  1. Cathy's Avatar
    You have a very full plate. My son has high functioning autism and can't eat anything with gluten or dairy so if I can help you with diet stuff please let me know. He also has a mild sensitivity to eggs and is not supposed to have them more than once a week so any baking I do for him I use an egg substitute made by Ener-G. There are others though besides that product that you can use.

    Do you belong to any kind of a support group for parents of kids with special needs?
    A friend of mine and I are planning to start a prayer group for parents of kids with special needs.
  2. CathyNY's Avatar
    That sounds as if it could be overwhelming at times. My son has a number of medical issues and it's very tough to juggle everything. Hugs, hugs, hugs.
  3. Patience's Avatar
    i have found some support groups but job's syndrome is so rare i have found a few that have it. i would love to belong to a prayer group for parents of special needs..
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