Digestive/Gastroschisis

Posted By T. Bolthouse on May 12, 1998 at 10:54:12:







My daughter was born with gastroschisis (severe).  As a result, she lost 70% of her ileum and had approximately 5 surgeries as an infant.
It was not until my daughter turned 8 that she began experiencing problems as a result of her birth defect.  Specifically, she had she much
abdominal pain she found it difficult to eat and walk.  Her physicians at UCSF determined she experienced pancreatitis and had gallstones.  
During surgery, they removed her gallbladder (and seven stones).  However, upon the re-opening of her old incision, the surgeons discovered
that her entire abdominal cavity was filled with adhesions, which were subsequently lysised.  This occurred in October 1996.  My daughter
remained in the hospital for one month.  Thereafter, my daughter continued to experience severe pain and missed a great deal of school.  In
October 1997, after several tests were conducted (MRI's, scans, g.i's, etc.), the surgeons again operated and lysis of adhesions once again and
also removed mikeldiverticuli.  Presently, my daughter has been diagnosed as having chronic pain syndrome.  In April, 1998 she underwent surgery
to repair an abdominal wall defect.  She is taking prevacid and propulsid before meals and for pain management, she takes ultram (4/day) and 75mg of
elavil at bedtime.  Her sleep patterns have been disrupted due to her pain.  At times during the week, she must be carried to bed or to the car.
The pain has become so intolerable that she no longer is attending school.  The school district now provides a tutor 5 hours a week.
My questions and concerns are:  is there anything that can be done for these painful adhesions she suffers from?  It is my understanding that her
surgeons no longer want to perform surgery for these adhesions.  Please help!!