Guest guest Posted April 13, 2012 Report Share Posted April 13, 2012 Just wanted to say thank you to everyone who wrote us back after we initially joined. It helped a lot. I contacted Dr. Pellegrini at the University of Washington and he turned me on to Dr. Waldhausen since he (Dr. Pellegrini) does not treat kids her age. Dr. Waldhausen agreed to look at 's HM and Dor and he knows the surgeon (Dr. Frieda Hulka) who did the job here in Reno. Which is good to hopefully get a second opinion on her condition shortly after Dr. Waldhausen gets her records. She is doing well with the occasional episodes of throwing up in the morning which I think after reading most of your posts that it must be spasm related do to being fed though the G/J tube all night. Though she is not able to convey exactly what is going on. Dr. Pellegrini said he has seen 2 cases of children in his career (a 1 and 4 year old) with Achalasia and has treated them both, which is more than the specialist we currently have. It has been 5 months since her Heller and Dor and she is eating well, they did a endoscopy and the LES is open. She is still on a cocktail of meds since leaving the hospital nexium, robinul, reglan, senokot, erythromycin, vitamin D, and iron, which seems to work for her. She does eat small portions of just about anything cut up, but her primary food intake is through her G/J tube still. The tracheotomy has helped too even though we were against it at first because in her case the esophagus was so enlarged that it cut off the airway and we do not have to deal with her gasping for air and turning blue anymore. Being fairly new to this whole disease, and knowing how recently I had to learn how to deal with the unknown of a disease that my daughter will never fully recover from, but will learn to live with, and may have to have to face future surgeries with... has been a very bitter, gigantic pill to swallow. But thanks to all of you and your daily posts, about your conditions, recommendations, etc. has helped me tremendously to glean just a little insight into what she is going though and what she may have to face in the future.. thank you all again. Chris Dad of 5 yrs old (1) dilatation, HM, Dor Fundo, tracheotomy, G/J Tube Quote Link to comment Share on other sites More sharing options...
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