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Need help in diagnoses of SMA Syndrome
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Need help in diagnoses of SMA Syndrome

I am looking for an expert in SMA Syndrome to ask a question.  My daughter has been sick for  1 1/2 years.  She is recently married with a new baby.  She has been sick throughout her pregnancy and even had her gallbladder removed during her 5th month because they thought her symptoms resembled cholescytitis.  She had several periods of dehydration during the pregnancy due to her inability to eat/drink appropriately and had to be hospitalized.   She was finally diagnosed at a major university hospital (very well known) as having cyclic vomiting syndrome and abdominal migraines.  I tried not to doubt the diagnosis, but truly did - but did not tell my daughter.  I needed her to be optimistic.  The medications did not help, and she continued to worsen.  About a month and 1/2 ago, she got to where she couldn't hold anything down and started losing weight.  She lost about 20 lbs in  2 1/2 weeks.  I was very concerned and knew I had to get her some help.  I went to a radiologist at the facility that I work and asked him how I would know if anything was wrong with her celiac or mesenteric arteries.  He pulled up her most recent CT Scan and found that her Superior Mesenteric Artery was angled at 17-18% and should have been higher.  He then ordered an upper GI series and asked that it be completed himself - so that he could do it a special way.  He had her stand during the UGI series and she drank the barium.  It passed through the stomach, but stopped at the duodenum - exactly where he had predicted it would stop.  It sort of "back-washed" (lack of a better term).  Small amounts did trickle through at intervals, but nothing great.  He then gave her solid foods, which never did pass - she vomited it back up later.  He diagnosed her with SMA Syndrome.  She was admitted and sent to a major medical university (very well known).  They repeated the UGI series, but did it routinely and had her lay down taking pictures at hourly intervals.  It was negative.  All of the tests they completed were negative except for one GES scan where she was sitting.  When they repeated it lying, it was normal.  Is it possible that this is SMA Syndrome and that it is only showing up when she's in a standing position?   I need help with this and need to know where to take her for help.  They physician that she saw at the major univerisity was very smart and one of approximately five in country in her specialty.  They would not, however repeat the UGI standing nor would they do an arteriogram (which I'm not sure if the arteriogram would have shown anything anyway).  The radiologist still feels certain that it is SMA Syndrome.  Would appreciate hearing from someone with any experience in this or knowledge in this area.  Thanks so much (I am desperate to help my daughter).  
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