rose doran
10-04-2006, 03:14 PM
Hello all, here is my story,
My beautiful daughter was diagnosed with reflux and a hernia at 3 months. Years of medication, a PH study at 10 months at pre school on renitadine and cispiride. Things settled and although she continued to regurgitate she managed in class, went through primary school and tried to live a normal life as possible. Had a barium meal at 8 showing reflux and a hernia.Had a first ever bout of bronchitis at 11 and afterwards her reflux became out of control. Could not keep anything down admitted to hospital weight loss and eventually had a naso gastrric tube. Had a nissen fundoplication in September 2005 success normal life minimum reflux lasted six months and then gradually failed. Then readmitted for revision of nissens to tighten the area result no difference.
We have had two years of our child having numerous investigation hospital admissions and two operations. At the moment we are totally lost. The consultants don't seem to know what to do next she is on maximum medication without any effect. She had a barium swallow after surgery and they are telling us she is now not refluxing as she did no reflux during the procedure yet every night she will eat regurgitate eat regurgitate. Her stomach contents comes up totally effortless yet it should be physically impossible to reflux after surgery.She has accepted psychological support to help her cope and the psychologists are saying they have nothing to offer her. She is a totally grouded and intelligent girl who is responding appropriately to a physical difficulty.Then have said she has a eating difficulty not an eating disorder and they have never come across a child like her.
We all struggle through each day and feel we are at the end of the line.
Any suggestion on what to do next?
My beautiful daughter was diagnosed with reflux and a hernia at 3 months. Years of medication, a PH study at 10 months at pre school on renitadine and cispiride. Things settled and although she continued to regurgitate she managed in class, went through primary school and tried to live a normal life as possible. Had a barium meal at 8 showing reflux and a hernia.Had a first ever bout of bronchitis at 11 and afterwards her reflux became out of control. Could not keep anything down admitted to hospital weight loss and eventually had a naso gastrric tube. Had a nissen fundoplication in September 2005 success normal life minimum reflux lasted six months and then gradually failed. Then readmitted for revision of nissens to tighten the area result no difference.
We have had two years of our child having numerous investigation hospital admissions and two operations. At the moment we are totally lost. The consultants don't seem to know what to do next she is on maximum medication without any effect. She had a barium swallow after surgery and they are telling us she is now not refluxing as she did no reflux during the procedure yet every night she will eat regurgitate eat regurgitate. Her stomach contents comes up totally effortless yet it should be physically impossible to reflux after surgery.She has accepted psychological support to help her cope and the psychologists are saying they have nothing to offer her. She is a totally grouded and intelligent girl who is responding appropriately to a physical difficulty.Then have said she has a eating difficulty not an eating disorder and they have never come across a child like her.
We all struggle through each day and feel we are at the end of the line.
Any suggestion on what to do next?