Thank you for the facebook link!! My 18 yr old was just diagnosed after 2 yrs of daily vomitting and being told she was anorexic when we knew she wasnt!! She has been in the hospital for 9 days on a feeding tube with no weight gain and is in excruciating pain!! Any and all ideas for help are welcome.
Hi there. So sorry to hear about your daughter being diagnosed with SMA Syndrome. Please check out the SMAS Group on Facebook... you'll find over 100 survivors there... some have already surgery for it (laparoscopic duodenojeujenostomy) while others are still going through tests, feeding tubes, etc... The group is an amazing source of information, especially the discussion boards on there. They are also a wonderful support group and offer friendship. Here is the link: http://www.facebook.com/topic.php?topic=24897&post=191564&uid=170641319067#!/group.php?gid=170641319067. These folks "get" it because they "have" it. Wishing you much luck and sending prayers your way. --