There is a Forum on the United Ostomy Association's website (www.UOAA.org
). You'll have to register but I think they'd have awesome hands on parent info...
It sounds like this was recent surgery. If it is, know that things will settle down, as time goes on, and the output will be more predictable and smell shouldn't be as bad.
You've already received a lot of good information...sorry I don't have first hand info for a little one. Hopefully Katiesmommy will be checking in and can help out.
Lastly, have you tried to find a WOC Nurse who specializes in pediatrics? www.wocn.org
may be able to help.
Welcome to the forum, too
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!