Posted By Posting
Apr 05, 2005
My son has Downs Syndrome and has suffered with reflux all 23yrs of his life. He has had 4 major operations his last one being a Gastric Interposition,I have now been told by specialist that they may not beable to operate again as scar tissue fron his last operation is attached to his Aortic Arch,this would mean a tube being inserted into his stonach for the rest of his life.I was wondering if you or anyone else have any information or any email addresses, be it in this country or abroad.I would very much appreciate any help of any kind. your very hopefully
Apr 19, 2005
Parts of our situations are similar
My son has had multiple surgeries to correct his reflux as well. With his last two surgeries, we looked at making things more liveable for him and not to correct his reflux. He had a jejunal interposition to replace the lower half of his esophagus and then had his stomach enlarged using colon. We were also told that further surgery would be very difficult if not disastrous. He is now 16 and has significant problems with reflux and aspiration as well as gaining weight/growing. Our goals now are working to help him along nutritionally and to prevent aspiration. We are doing OK with nutrition with the help of a GJ button for J-feeds but have not been as successful at preventing aspiration. My son hates his feeding tube but agrees that it needs to be here at least for now. I know it would be much more difficult for your son to understand since he has Downs syndrome. I wish I had something more to offer but wanted you to know you aren't alone. Patti
Jun 23, 2005
My son was born with EA/TEF (his esophagus was not connected to his stomach). At three days old they had to sew the two ends together to connect them. I have talked to several other parents of EA/TEF babies and have found out that babies that have a LONG gap are stretched and sewed together. Also, if the surgery keeps stricturing (like and hourglass) at the stitched site, they can cut that part out and stretch the non scared pieces together. Dr. Foker in Minneapolis is a pioneer in the stretching method. It is fairly new, but it works. He has even re-connected kids that are 5 years old and told that they would have to be g-tube fed for the rest of their lives. I'm sure they could cut out the bad part of the esophagus and stretch the good ends together. Here's some general info on a re-section: They say the hospital stay is short, 3-4 days. Hope this helps.
Check with your
doctor first!