DiGeorge & GERD

Hello i have a beautiful 4 month old daughter with Digeorge Syndrome. She has gone through 1 heart surgery and will be going thru 2 more. She has severe GERD which sems to be here her biggest problem right now. When she does reflux it is obvioiusly painful to her! it always ends up coming out her nose along with her mouth. she does not have an apparent cleft palate – I’m wondering if any of u have had to deal with this?

My son had the same problem. He was placed on a G/J tube at 6 months. We fed him by pump and bolus feeds until he was about 18 months. He was also given Zantac along with Pepcid. This combination seemed to help and continued for about 1 year. We went into a feeding program and once my son was able to eat solid foods the GERD went away within 6 months. Our son is now 5yrs and has no symptoms of GERD and eats and tolerates everything. I would ask about a J tube until she can tolerate feeds without aspiration. Hope this helps out a little. Best of Luck!!!

wow, for so long i thought no one else was having this problem. my son is 21 months also has digeorge and severe gerd. he takes prevacid and zantac but we are pushing to have a fundoplacation, i am probably spelling that wrong but they will make him a muscle in his tummy because his is not working or not there. he had a g-tube placed at 6 months, because he kept pulling out the ng tube in his nose. he also had heart surgery at 3 months. he is on solids but does not eat or gain well. he was doing ok for a while but just recently we took him in for a weight check and he had not gained in three months, totally devastating. he is 32 in tall and weighs 24 pounds. he is our little guy. he appeared to have no cleft issue but when our ent did a broncoscopy she found he had a type 4 way in the back. we are waiting to see if it will close itself. he also has to have everything thickened to syrup before he can eat it.i am looking for a support group that meets do you know of any?

I have a daughter who is 9 months old and had really bad reflux. She has a g-tube and a nissan. We also found out that she had an ulcer in her duodenum. She is on prevacid. Before going through any surgeries make sure that you child does not have an ulcer. For the first three months we had a problem with my daughter gagging and wretching. Because of the nissan she is not able to throw up or burp. Also make sure you get as much information about the g-tube. It seemed that the doctors only told us what we wanted to hear so we would get the g-tube put in.