Post by Amy Lombardi on Mar 30, 2009 9:32:23 GMT -5
Subject: Feeding Tubes
Name: Glenda Flatt
Date Posted: Aug 25, 08 - 5:11 PM
Message: I know that this subject is kind of worn out...but we are considering the tube. Our son is somewhat active. He walks a little (with assistance only), crawls/moves around in the floor. He is 15. Works with his hands alot making things. Pretty alert. Is having more and more trouble eating and losing weight. What kind of tube would be better?
Subject: Re: Feeding Tubes
Name: Peggy D.
Date Posted: Aug 26, 08 - 9:32 AM
Message: My son had LINCL, but was still able to crawl around on the floor when we had to have a feeding tube placed. We had the jpeg first, but when that came out sometime in the middle of the night about 7 monthslater,it was replaced with a mickey-button. It was so much easier, and we replaced it every 3 months at home ourselves. Christopher never tried to pull it out, he was an easy child like that. But the jpeg was a pain in the neck for us because it was more in the way when dressing and bathing and WE were afraid of pulling it out by accident. When the tube was first placed, we were amazed at how much strength he gained back and how much more alert and active he was. Good luck. the gastro should be able to discuss with you even if you are not opting for it at this moment.
Name: Glenda Flatt
Date Posted: Aug 27, 08 - 3:29 PM
Email: Click here to Email
Message: We are really considering doing a feeding tube with our son, we're really scared to actually do it. We hate to put him through the pain. If someone can email me with phone #'s we would be glad to call someone for advice.
Please help!!
Name: Bonnie Thompson
Date Posted: Aug 27, 08 - 7:39 PM
Email: Click here to Email
Message: Please feel to call us in Michigan. We will be home Sept. 3. Evenings are a better time to reach us.
734-242-5171.
Steve and Bonnie Thompson
Name: Glenda Flatt
Date Posted: Aug 28, 08 - 1:28 PM
Message: Thanks for your support!
Name: Roger Crane
Date Posted: Aug 29, 08 - 4:03 AM
Email: Click here to Email
Message: Hey Glenda,
This subject, and any other subject that concerns a parent is never "worn out". This is exactly what this board is all about. We who have been there, and indeed are still there need to support each other and may we always continue to do so. Our sons got buttons fitted and never looked back. Perhaps the biggest danger is nodding off on the middle of a bolus feed and pouring Jevity (or whatever) all over the place. A real sticky clean up job but always good for a laugh later.
Love you all lots,
Roger Crane.
Toowoomba, Queensland, Australia
Name: Glenda Flatt
Date Posted: Aug 25, 08 - 5:11 PM
Message: I know that this subject is kind of worn out...but we are considering the tube. Our son is somewhat active. He walks a little (with assistance only), crawls/moves around in the floor. He is 15. Works with his hands alot making things. Pretty alert. Is having more and more trouble eating and losing weight. What kind of tube would be better?
Subject: Re: Feeding Tubes
Name: Peggy D.
Date Posted: Aug 26, 08 - 9:32 AM
Message: My son had LINCL, but was still able to crawl around on the floor when we had to have a feeding tube placed. We had the jpeg first, but when that came out sometime in the middle of the night about 7 monthslater,it was replaced with a mickey-button. It was so much easier, and we replaced it every 3 months at home ourselves. Christopher never tried to pull it out, he was an easy child like that. But the jpeg was a pain in the neck for us because it was more in the way when dressing and bathing and WE were afraid of pulling it out by accident. When the tube was first placed, we were amazed at how much strength he gained back and how much more alert and active he was. Good luck. the gastro should be able to discuss with you even if you are not opting for it at this moment.
Name: Glenda Flatt
Date Posted: Aug 27, 08 - 3:29 PM
Email: Click here to Email
Message: We are really considering doing a feeding tube with our son, we're really scared to actually do it. We hate to put him through the pain. If someone can email me with phone #'s we would be glad to call someone for advice.
Please help!!
Name: Bonnie Thompson
Date Posted: Aug 27, 08 - 7:39 PM
Email: Click here to Email
Message: Please feel to call us in Michigan. We will be home Sept. 3. Evenings are a better time to reach us.
734-242-5171.
Steve and Bonnie Thompson
Name: Glenda Flatt
Date Posted: Aug 28, 08 - 1:28 PM
Message: Thanks for your support!
Name: Roger Crane
Date Posted: Aug 29, 08 - 4:03 AM
Email: Click here to Email
Message: Hey Glenda,
This subject, and any other subject that concerns a parent is never "worn out". This is exactly what this board is all about. We who have been there, and indeed are still there need to support each other and may we always continue to do so. Our sons got buttons fitted and never looked back. Perhaps the biggest danger is nodding off on the middle of a bolus feed and pouring Jevity (or whatever) all over the place. A real sticky clean up job but always good for a laugh later.
Love you all lots,
Roger Crane.
Toowoomba, Queensland, Australia