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Post by IPH NET on Dec 10, 2009 19:33:51 GMT -6
Please, if you know doctors, hospitals, articles, medications, things that may help others....put them here!
IPH-NET
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Post by bearstate on Dec 21, 2012 15:09:42 GMT -6
First of all IPH NET, thank you so much for setting this up for all of us!
Just to let everyone know, my 9 year-old daughter, Annabella (Bella), has NOT had a bleeding episode since OCTOBER 2011, thank God! A combination of bi-monthly IVIG and Azathiaprine (Imuran) and a lot of praying is doing the trick. She's seeing 8 specialists at Lucile Packard Children's Hospital at Stanford.
I'll be more than happy to answer any question anyone has so that we may better understand this insidious disease. Our children are counting on us parents to be their advocates!
God bless your children!
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