Severe GERD from birth, former FTT, major feeding difficulties, dysphagia, episodic pseudo-obstruction, SID, developmental delays, sensory ataxia, areflexia, muscle weakness and fatigue, hypotonia, arrhythmia and bradycardia (pacemaker 10/6/09), autonomic issues...
So our GI and Surgeon seem a bit perplexed. Because Maggie isn't taking anything orally, the swallow study isn't indicated. The upper GI seemed to indicate that her fundo is intact, and the fact that she can swallow liquids and throw-up makes them think it is loose enough. He still feels it could be emptying, so one step would (reluctantly) be Reglan. Another would be to repeat the Endoscopy, PH Probe to see if anything has changed, and possibly an MRI to see if there is something there triggering a nausea/vomiting type response. We are going to do a trial of the Reglan, low doseage and vigilantly watch for side effects. Sometimes she retches and throws up on an "empty" stomach and gets up quite a bit of clear liquid (maybe 20-30ml). He also brought up the GJ tube, but she is gaining weight right now, just not progressing with oral feeds so that is very low on my list. Is there anything out there where the babies make excess stomach fluid or saliva? Feedback????
We started Maggie on Reglan Monday. Are going to repeat Endoscopy, PH Probe and possibly do an MRI in two weeks if this doesn't help. Also discussed GJ Tube and continuous feeds. I really don't want to take that step until we have exhausted all possibilities.
Don't be afraid of the GJ and continuous feeds...it really is a good thing to help control the vomiting! I'm glad they're repeating the scope...it's really the only way to actually get in and see if the fundo is intact.
Severe GERD from birth, former FTT, major feeding difficulties, dysphagia, episodic pseudo-obstruction, SID, developmental delays, sensory ataxia, areflexia, muscle weakness and fatigue, hypotonia, arrhythmia and bradycardia (pacemaker 10/6/09), autonomic issues...