Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 , My son is 13 months old and has a g-tube for feeding. He has more issues than just PMG, though. Ethan is also missing a portion of chromosome 13, has severe reflux, and a bad oral aversion. He got a NG tube when he was 3 months old due to minor aspirations and failure to thrive. Then he switched to a NJ tube a month later, and finally got a g-tube at 8 months of age. At that time they also did a nissem fundoplication to help control the reflux. I don't think Ethan's feeding issues are all due to the PMG but more due to the chromosome deletion. I do know that they wanted to wait until he was bigger before doing the surgery. A good GI doctor would give you the information you need to make an informed decision. Also, there is a great group here at Yahoo Groups for tube fed kids. It is " feeding_g-tubes " . > Hi Guys, > Just wondering if lots of you have had to resort to naso gastric tube feeding with your little ones or is this uncommon? > Also what sort of age do they normally agree to do a gastrostomy > Any feed back would be great! > mum to 5 months. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 My daughter got a g-tube at age 2 for supplemental night feeding. We started for a few months with the naso tube to make sure it would work. It did. And it does indeed get easier putting the tube in as you do it more. Amazing the things we can do for our kids! was on the tube for about 4 years and then went off the g-tube and onto growth hormones (which she is doing splendidly on. She's 10 now and solidly on the growth chart). She refers to her stoma (the hole left behind) as her second belly button. I know this is an incredibly hard decision, one that we agonized over for a long time. Then grew an inch and gained a pound in her first 2 weeks on the tube. The new felt guilty for waiting so long. You can't win for trying... > Hi Guys, > Just wondering if lots of you have had to resort to naso gastric tube > feeding with your little ones or is this uncommon? > Also what sort of age do they normally agree to do a gastrostomy > Any feed back would be great! > mum to 5 months. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 , My son held his own up until about 11 months, at which point we resorted to an NG tube. He had his g-tube placed at roughly a year. It was the best thing we ever did for him. Once he was getting good nutrition with a minimum of effort on his part, he was able to devote his energies to interacting with us and developing what skills he has. Looking back, I wish I had gotten his g-tube much earlier. , mom of boys, the youngest, , is now 4! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi , My baby had to have g-tube placement along with nissen when she was seven months old. I was fortunate to be able to breast feed her up until then. She had severe reflux and was not wanting to eat. The doctors would look at her and state that she does not look like she is not eating. She was and still is pretty chunky. She would jerk away from my breast because of pain. She is g-tube dependant and does not want anything near her mouth. She keeps her mouth shut pretty tight. I do exercises on her face but she gets really mad. She is 22 months now. She is unable to do much. She only wants to lay on her back. She has a nurse three times a week. She is on Valproic Acid, Ativan, Lamictal, Keppra, Vitamin B6, Reglan, and Tagamet. I have read somewhere that most kids with PMG will develop reflux and will eventually need a g-tube with possible nissen placement. Elena, Leah 22 months severe PMG, spastic quadraplegia, cerebral palsy, and reflux, 16 yrs, and Emilio 10yrs healthy. tube feeding Hi Guys, Just wondering if lots of you have had to resort to naso gastric tube feeding with your little ones or is this uncommon? Also what sort of age do they normally agree to do a gastrostomy Any feed back would be great! mum to 5 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Carly is now two and has been g-tube dependent since 3 months. We had the nissen and g-tube done at three months because of reflux and aspiration. We had no idea about the PMG until she had a second MRI done at a year old. The gtube saved her life and has made her a happy and healthy two year old. She is still delayed but therapy is doing good things for her. Thank God for the gtube, because without it we would not have her. Christy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.