Assuring Pediatric Nutrition in the Community
 

FREQUENTLY ASKED QUESTIONS:
Specific Diagnoses - Short Bowel Syndrome


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Does anyone know of a support group for parents of children surviving necrotizing enterocolitis (NEC) with short bowel syndrome (SBS)?

There does not appear to be a specific support group for children who had NEC as infants resulting in SBS. However, there is a foundation called the Oley Foundation which is national and is a support group for kids on long term TPN. Within this group, there are many children who have SBS resulting from NEC. The Oley foundation has a newsletter as well. The number for the Oley foundation is 1-800-776-OLEY. After calling this number, the family will be directed to the closest group in their region. Most of the families involved have children with SBS who had NEC as infants. There is an annual conference for the families where MD's and RD's present the newest research and treatments for sequlae from SBS.

 
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