Help in diagnosing SMA Syndrome (conflicting reports)

[dekabe]

My daughter is very sick (1 1/2 years).  Recently lost over 20 lbs in 2 1/2 weeks.  I asked a local radiologist to tell me how I would know if anything was wrong with her celiac or mesenteric arteries.  He looked at her recent CT scan and saw that her SMA was angled at 17-18% -which is narrow and suggestive of SMA Syndrome.  He completed an UGI - standing and it was abnormal.  Barium backwashed at the duodenum with only a small trickle going through.  Solid food did not pass at all.  She went to a major univeristy medical center and they repeated the UGI series - but did it routinely (lying down) and took hourly pictures.  It was normal.  The radiololgist from the previous facility said she needed to be standing.  All other tests at the major university were normal - except a sitting GES.  When repeated lying down, it was normal.  Is it possible that she would need to be standing to see this SMA Syndrome?  I need some help from someone that specializes in SMA Syndrome and may know more about it.  Apparently, not many people are familiar with it.  Can you offer insight?  

[Mouse6719]

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.

[skinnymomma]

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. --