We've made an effort to document our struggle with MSPI, and to collect online resources and to give advice to people who have written to us. Hardly a week goes by without someone telling me how lost and scared they were when their child was diagnosed with MSPI, and how helpful this blog has been. This response has been wonderful, but it has also made me realize that a blog is not necessarily the ideal setup for creating a community that can offer support and advice.
With that in mind, I have created a wiki where people can join, add their stories, questions, recipes and what ever else they can think of. A wiki is only as good as the people who use it, all you MSPI parents out there PLEASE JOIN!!!!!
http://milkintolerance.wetpaint.com
1 comment:
This seems to require registration and maybe a fee, but FYI this seems to be relevant online help and commiseration for MSPI under another name
Parents of Children with FPIES
"NEW! Support for families with a child who has (or is suspected of having) Food Protein-Induced Enterocolitis Syndrome (FPIES). FPIES includes those diagnosed with Milk (MPIES), Soy (SPIES), and Milk/Soy Protein-Induced Enterocolitis (MSPIES). Join other parents for information and support related to the FPIES diagnosis."
From here
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