Post by Amy Lombardi on Mar 30, 2009 9:36:17 GMT -5
Subject: question on feeding
Name: jocelyn
Date Posted: Aug 28, 08 - 10:32 PM
Message: Hi All,
I was wondering if anyone could give me any advice on a problem I have at the moment. I have 2 children 6 & 7 both with late infantile, they are both on g tubes and are both having alot of problems with tolerating their feeds. They are fine whilst not being fed with no secretions and no coughing. Not long after starting feeds they get conjested and seem to have alot of secretions which in turn make them vomit. They where both on bolus feeds but I have found changing to contiuous feeds is better but I have had to reduce the rate, so now I am unable to get them to tolerate both the amount of feed and water that the dietician has instructed me to give to them. They are both on motilium and glcopyrrolate for this but it is not giving me much help. It is very frustrating as I know they need the feeds but at the same time when they are not being fed they are much happier and don't have to be suctioned every 5 minutes. Has anyone else had the same problem? would love any advice.
Thanks
Jocelyn
Name: dawn
Date Posted: Aug 29, 08 - 1:23 PM
Email: Click here to Email
Message: We struggled with this with our 6 year old (LINCL) until about 2 months ago and we switched to a G/J tube and now all of his meds and feed are going to the J-tube and he has even gained 7 pounds and is doing much better. We have a Joey pump which goes in a backpack and is easy to take with us and to his school. He is probably off the feed for 4-5 hours a day.
Name: Anonymous
Date Posted: Aug 30, 08 - 12:50 PM
Message: It could be they are refluxing (the contents of the stomach come back up through the esophagus) which can cause secreations/coughing if they get into the lungs.
If it is reflux sometimes medications can help, but the other routes are either the g-tube being replaced with a j-tube/g-j tube or a stomach wrap, where a surgery is done to prevent the contents of the stomach from coming up. This does make the child unable to vomit though.
Name: Jeff Smoak
Date Posted: Aug 30, 08 - 5:43 PM
Email: Click here to Email
Instant Messenger: smoaksignal
Message: We had a similar problem. It may help (if you haven't already done this) to make sure the formula is a type that is completely broken down. We use Ellecare and it is broken down to where the stomach doesn't have to break it down at all. We also use reglan to help the stomach empty as well as zantac and Zegerid (like Prevacid but mixes better for feeding tubes.) These help with the reflux. Our girl now is struggling with reflux even with these meds, but it has cut down on the vomiting. Our vomiting is now from seizures. Otherwise, like the others mentioned, J-tube may be the answer to bypass the stomach altogether.
Take care.
Name: Marianne Nichols
Date Posted: Aug 31, 08 - 4:37 PM
Email: Click here to Email
Message: My daughter also has been having the same problem: trying to get the calories in every day that is suggested by the dietcian without vomiting. She was put on Reglan but I noticed that she began having more seizures. When I looked up Reglan in the PDR(Physician's Desk Reference), I was shocked to read that Reglan should not be given to anyone with a seizure disorder. I stopped the Reglan and the seizures are now back to "normal" (whatever that is!) and she is more relaxed and happier it seems. Now when she gets nauseated from the feeds, I rub Phenergan topical on her belly and it is working for us. I will be more careful in the future to investigate any medication before she is put on it!
Good luck with your kids!
Name: Nori
Date Posted: Aug 31, 08 - 5:16 PM
Email: Click here to Email
Message: Hi!
I am so happy to finally hear about someone who had the same experience with Reglan that we did. It seems that most GI doctors just put people who get a feeding tube on Reglan as a matter of course. The seizures that it caused in my son were not typical and nearly killed him before I figured it out for myself as you did. We had him to the ER twice and both times I asked about it because it was the only thing that was new and both times I was told that it wasn't the problem and the GI specialist said the same. In the PDR, not only does it say that it is contraindicated for people with seizure disorders, but for anyone with a nervous system disorder! I was apalled that so many physicians totally missed that. I learned a valuable lesson........always truth your insticts.
Name: jocelyn
Date Posted: Aug 28, 08 - 10:32 PM
Message: Hi All,
I was wondering if anyone could give me any advice on a problem I have at the moment. I have 2 children 6 & 7 both with late infantile, they are both on g tubes and are both having alot of problems with tolerating their feeds. They are fine whilst not being fed with no secretions and no coughing. Not long after starting feeds they get conjested and seem to have alot of secretions which in turn make them vomit. They where both on bolus feeds but I have found changing to contiuous feeds is better but I have had to reduce the rate, so now I am unable to get them to tolerate both the amount of feed and water that the dietician has instructed me to give to them. They are both on motilium and glcopyrrolate for this but it is not giving me much help. It is very frustrating as I know they need the feeds but at the same time when they are not being fed they are much happier and don't have to be suctioned every 5 minutes. Has anyone else had the same problem? would love any advice.
Thanks
Jocelyn
Name: dawn
Date Posted: Aug 29, 08 - 1:23 PM
Email: Click here to Email
Message: We struggled with this with our 6 year old (LINCL) until about 2 months ago and we switched to a G/J tube and now all of his meds and feed are going to the J-tube and he has even gained 7 pounds and is doing much better. We have a Joey pump which goes in a backpack and is easy to take with us and to his school. He is probably off the feed for 4-5 hours a day.
Name: Anonymous
Date Posted: Aug 30, 08 - 12:50 PM
Message: It could be they are refluxing (the contents of the stomach come back up through the esophagus) which can cause secreations/coughing if they get into the lungs.
If it is reflux sometimes medications can help, but the other routes are either the g-tube being replaced with a j-tube/g-j tube or a stomach wrap, where a surgery is done to prevent the contents of the stomach from coming up. This does make the child unable to vomit though.
Name: Jeff Smoak
Date Posted: Aug 30, 08 - 5:43 PM
Email: Click here to Email
Instant Messenger: smoaksignal
Message: We had a similar problem. It may help (if you haven't already done this) to make sure the formula is a type that is completely broken down. We use Ellecare and it is broken down to where the stomach doesn't have to break it down at all. We also use reglan to help the stomach empty as well as zantac and Zegerid (like Prevacid but mixes better for feeding tubes.) These help with the reflux. Our girl now is struggling with reflux even with these meds, but it has cut down on the vomiting. Our vomiting is now from seizures. Otherwise, like the others mentioned, J-tube may be the answer to bypass the stomach altogether.
Take care.
Name: Marianne Nichols
Date Posted: Aug 31, 08 - 4:37 PM
Email: Click here to Email
Message: My daughter also has been having the same problem: trying to get the calories in every day that is suggested by the dietcian without vomiting. She was put on Reglan but I noticed that she began having more seizures. When I looked up Reglan in the PDR(Physician's Desk Reference), I was shocked to read that Reglan should not be given to anyone with a seizure disorder. I stopped the Reglan and the seizures are now back to "normal" (whatever that is!) and she is more relaxed and happier it seems. Now when she gets nauseated from the feeds, I rub Phenergan topical on her belly and it is working for us. I will be more careful in the future to investigate any medication before she is put on it!
Good luck with your kids!
Name: Nori
Date Posted: Aug 31, 08 - 5:16 PM
Email: Click here to Email
Message: Hi!
I am so happy to finally hear about someone who had the same experience with Reglan that we did. It seems that most GI doctors just put people who get a feeding tube on Reglan as a matter of course. The seizures that it caused in my son were not typical and nearly killed him before I figured it out for myself as you did. We had him to the ER twice and both times I asked about it because it was the only thing that was new and both times I was told that it wasn't the problem and the GI specialist said the same. In the PDR, not only does it say that it is contraindicated for people with seizure disorders, but for anyone with a nervous system disorder! I was apalled that so many physicians totally missed that. I learned a valuable lesson........always truth your insticts.