Posted By Posting
Nov 21, 2004
Nikki in Indy
Esophageal Dismotility
My son, Zach age 4, had his fundo when he was 10mo old.(he was a 27 weeker at birth) He developed an oral-motor dysfunction and defensiveness as a result of GERD and is to this day a g-tube dependent, non-eater. We have worked with OT's and SLP's who specialize in feeding issues since day one, and just recently his GI doc ordered an esophagram to check his esophageal motility, although the doc told me there was no way to treat this condition. Well surprise, surprise Zach definetly has esophageal dismotility, which is making po feeding progress REALLY difficult, there is no way to treat it just work around it, and hopefully it will improve as he takes more by mouth. Anyone have any experience, strength, and/or hope to share with me??? Thanks, Zach's mom (Nikki) P.S. We have tried Reglan in the past with no progress
Nov 21, 2004
Anonymous
Esophageal Dysmotility
Nikke, Hi & Welcome. I'm sorry Zach is having so much trouble though it really isn't uncomon. My son also has esophageal dysmotility but the cause of his is different. He had his esophagus replaced with small intestine. It is now very long and things don't move through very well at all. Reglan will not do anything to help esophageal motility. Propulsid (only available through a limited access protocol) and Domperidone (not available in US unless your GI will presribe) can help but even that can be limited. My son's esophageal dysmotility is severe. He had less than 1/2 of the barium that he had for a UGI clear in more than 30 minutes. Things should move prompty through the esopahgus and into the stomach. I hope you are able to find something that helps your son. I wish I had something more to say that would help. Patti
Dec 15, 2004
Heather
I was actually happy to see that there are other older children out there battling esophageal motility issues. My daughter is 12 and was born with EA which was repaired twice and has had two nissens. She had a couple of decent motility years but has degenerated as she has gotten older. She is completely dependant on her G and J tubes. Very frustrating situation but I am happy to hear we are not alone!
Dec 16, 2004
Anonymous
Esophageal repairs
Heather, You are definitely not alone in this. My son didn't have EA but he had multiple Nissens and ended up with a short, severely damaged esophagus which was partially replaced with jejunum 4 years ago. He has poor esophageal motility and is very dependent on his J-tube also. He will most likely be having a revision done in the next several months due to aspiration. If you want to talk, e-mail me at sknmom@comcast.net
Nov 21, 2004
ptyler
Esophegeal dysmotility
My name is Pam Tyler I am a PAGER volunteer, an SLP that evaluates and treats children with feeding disorders and mother of a 7 year old refluxer. I just attended a conference this past week in which esophageal dysmotility was discussed so I may have some insights that may be helpful. Treatment of dysmotility may depend on the type or cause of the dysmotility. Prolonged GERD can cause esophegeal strictures (narrowing) in portions of the esophegus casuing dysmotility and treatment for this would be continued treatment of the GERD and sometimes surgery to dialate the stricture is considered. Also a fundo that is too tightly wrapped may cause dysmotility and surgery to loosen the wrap can help. Reglan would not be appropriate for an upper GI dysmotility. There are other types and causes for dysmotility but the two I mentioned seem most likely in your son's case. The other types would be esophageal spasm which would only cause intermitten dysmotility , Achalasia which can be treated with medication, an esophageal ring which is highly assoicated with hital hernia and systemic sclerosis which would have many more obvious symptoms. What might be helpful to have your SLP or refer you to one in a hospital setting that can do a FEES or fiberoptic endoscopy of his swallow. The SLP may be able to see that not only is food slow to move down the espohagus but that not much is able to get through the fundo This may support the theory that the fundo is wrapped too tightly. Take care and let us know how he is doing I would be interested in knowing the outcome, Pam
Check with your
doctor first!