Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hi everyone, I have a question for all of you about my daughter, Abby (18 months). She has had a g-tube since she was 2 months old. In January she passed her swallow study for purees and nectar-thick foods! Yea!!! She is interested in trying any foods that she is offered...the problem is that she really doesn't want more than a few bites of anything. She doesn't like baby food at all, but she will eat a little bit of mashed potates, pureed sweet potatoes, and anything with strong salty tastes. She also LOVES cheese puffs. My thought is that she really isn't hungry (since she is still tube fed)and doesn't associate food with hunger. How do you start the process of increasing the amount taken by mouth when your child is still using a feeding tube? I would appreciate any input you could give me....thanks!! Kimesha Northway Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hi, my daughter is 9 monthes and she just passed her feeding study too and I'm going through the same problem. Shes got at GJ tube and is on a continous feed. Shes never hungry . Who wants a mouth full of food on a full stomack. I don't get it either and I don't think my dietion does either. Please keep me up to date on your progress and if you come up with anything and I'll do the same. > > Hi everyone, > > I have a question for all of you about my daughter, Abby (18 months). > She has had a g-tube since she was 2 months old. In January she > passed her swallow study for purees and nectar-thick foods! Yea!!! > She is interested in trying any foods that she is offered...the > problem is that she really doesn't want more than a few bites of > anything. She doesn't like baby food at all, but she will eat a > little bit of mashed potates, pureed sweet potatoes, and anything with > strong salty tastes. She also LOVES cheese puffs. My thought is that > she really isn't hungry (since she is still tube fed)and doesn't > associate food with hunger. How do you start the process of > increasing the amount taken by mouth when your child is still using a > feeding tube? I would appreciate any input you could give > me....thanks!! > > Kimesha Northway > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Eva is 10 months old and she was 8 months old when she passed her swallow study. We are still working on getting her to take more by mouth. Is your daughter on an overnight slow feed? Eva just stopped hers and is taking alittle more by mouth. Its going to take awhile for them to learn whats its like to be hungry. Their body is so use to the feeding all the time when it was time to feed them. So they dont know what to do when they get hungry. Eva had a scoping done and she did not eat for 9 hours and she didnt show anything that said she was hungry. Its just anther thing they need to learn and will take time. Just keep working on it!! Hugs, Crystal and Eva (10 month charger) > > Hi everyone, > > I have a question for all of you about my daughter, Abby (18 months). > She has had a g-tube since she was 2 months old. In January she > passed her swallow study for purees and nectar-thick foods! Yea!!! > She is interested in trying any foods that she is offered...the > problem is that she really doesn't want more than a few bites of > anything. She doesn't like baby food at all, but she will eat a > little bit of mashed potates, pureed sweet potatoes, and anything with > strong salty tastes. She also LOVES cheese puffs. My thought is that > she really isn't hungry (since she is still tube fed)and doesn't > associate food with hunger. How do you start the process of > increasing the amount taken by mouth when your child is still using a > feeding tube? I would appreciate any input you could give > me....thanks!! > > Kimesha Northway > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 I'm trying to remember how we did this. I recall agonizing over it with the speech therapist. She and I were dedicated to making it happen, but the doctors didn't seem to share our passion. I recall in the spring getting permission from the pediatrician to go for it. We expected some weight loss through the transition so we timed it with her healthiest time of the year -- rather than losing weight during illness in the winter. I remember reducing the overnight feeds slowly. We fed her by mouth before starting the tube feeding so she'd begin to connect oral feeding with that fullness in her tummy. At some point, we had to stop the overnight feeds altogether and hope she'd make enough gains during the day quickly. I'd have to go back to my journals for details. For me, the key was finding a speech therapist who was dedicated to the task and who brainstormed with me to figure out something that made sense to us. Then we just worked and worked at it. It felt like to took forever, but she had her tube removed at age 1.5 years so it must have gone relatively quickly. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 I'm trying to remember how we did this. I recall agonizing over it with the speech therapist. She and I were dedicated to making it happen, but the doctors didn't seem to share our passion. I recall in the spring getting permission from the pediatrician to go for it. We expected some weight loss through the transition so we timed it with her healthiest time of the year -- rather than losing weight during illness in the winter. I remember reducing the overnight feeds slowly. We fed her by mouth before starting the tube feeding so she'd begin to connect oral feeding with that fullness in her tummy. At some point, we had to stop the overnight feeds altogether and hope she'd make enough gains during the day quickly. I'd have to go back to my journals for details. For me, the key was finding a speech therapist who was dedicated to the task and who brainstormed with me to figure out something that made sense to us. Then we just worked and worked at it. It felt like to took forever, but she had her tube removed at age 1.5 years so it must have gone relatively quickly. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 I'm trying to remember how we did this. I recall agonizing over it with the speech therapist. She and I were dedicated to making it happen, but the doctors didn't seem to share our passion. I recall in the spring getting permission from the pediatrician to go for it. We expected some weight loss through the transition so we timed it with her healthiest time of the year -- rather than losing weight during illness in the winter. I remember reducing the overnight feeds slowly. We fed her by mouth before starting the tube feeding so she'd begin to connect oral feeding with that fullness in her tummy. At some point, we had to stop the overnight feeds altogether and hope she'd make enough gains during the day quickly. I'd have to go back to my journals for details. For me, the key was finding a speech therapist who was dedicated to the task and who brainstormed with me to figure out something that made sense to us. Then we just worked and worked at it. It felt like to took forever, but she had her tube removed at age 1.5 years so it must have gone relatively quickly. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 hey werhe are you from im from aus ellen > > I'm trying to remember how we did this. I recall agonizing over it with > the > speech therapist. She and I were dedicated to making it happen, but the > doctors didn't seem to share our passion. I recall in the spring getting > permission from the pediatrician to go for it. We expected some weight > loss > through the transition so we timed it with her healthiest time of the year > -- rather than losing weight during illness in the winter. > > I remember reducing the overnight feeds slowly. We fed her by mouth > before > starting the tube feeding so she'd begin to connect oral feeding with that > fullness in her tummy. At some point, we had to stop the overnight feeds > altogether and hope she'd make enough gains during the day quickly. I'd > have to go back to my journals for details. For me, the key was finding a > speech therapist who was dedicated to the task and who brainstormed with > me > to figure out something that made sense to us. Then we just worked and > worked at it. It felt like to took forever, but she had her tube removed > at > age 1.5 years so it must have gone relatively quickly. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 has been tube fed since birth and she just turned 3 last month. She passed her swallow test this past summer when she was 2.5 yrs and is now eating everything by mouth. Prior to that she was cleared for purees and nectar thick and we started feedings then. It was like a year that she could have those, so we have been working on this a long time. She is still on her tube for liquid intake. 's eating habits were exactly the same in the beginning. We had her on feeds at night and would try oral feedings during the day. I gradually decreased the amount she was getting at night as she increased what she was eating during the day. It took a long time and she still does not seem to know what hunger is. For her, eating is a social thing, not a needed thing. She just turned three in Feb and started school. She was still getting her nutritional supplement through her tube when she started school, but is now only needing liquid. We tried to do bolus feeds after oral feeds, but she didn't tolerate it. She has some trouble with digestion so we went back to night feeds. If you can do bolus feeds, it might help to stretch the stomach a little. I know that with , part of the problems were lack of smell so she doesn't taste most foods. Try using Mrs. Dash to sprinkle on the foods that you offer. We also put ketchup or ranch dressing on some things. She also likes steak sauce or BBQ sauce on foods. Sometimes the things we mix together for her are not things we would eat, but she does so we just do it. Also, remember that they have not done this for a long time, if ever and the muscles that they need to swallow are not built up like in another child. They will tire easier, but that will get better. Try to make it fun and encourage them to take just one more bite when they say finished. That way they don't think they win and don't have to do it. When would tell us finished, we would not let her up until she took that one more bite. She would get really mad sometimes, but it really worked and then she just did it with no tantrum. Try to keep track of how many bites they are taking each time and gradually increase the bites, even if it is only by one bite. It takes time, but they will get there. Keep trying and remember that sooner or later they will get it and start doing more. Hope this helps. Mom to 3 yrs CHARGE kibest wrote: Hi everyone, I have a question for all of you about my daughter, Abby (18 months). She has had a g-tube since she was 2 months old. In January she passed her swallow study for purees and nectar-thick foods! Yea!!! She is interested in trying any foods that she is offered...the problem is that she really doesn't want more than a few bites of anything. She doesn't like baby food at all, but she will eat a little bit of mashed potates, pureed sweet potatoes, and anything with strong salty tastes. She also LOVES cheese puffs. My thought is that she really isn't hungry (since she is still tube fed)and doesn't associate food with hunger. How do you start the process of increasing the amount taken by mouth when your child is still using a feeding tube? I would appreciate any input you could give me....thanks!! Kimesha Northway CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 has been tube fed since birth and she just turned 3 last month. She passed her swallow test this past summer when she was 2.5 yrs and is now eating everything by mouth. Prior to that she was cleared for purees and nectar thick and we started feedings then. It was like a year that she could have those, so we have been working on this a long time. She is still on her tube for liquid intake. 's eating habits were exactly the same in the beginning. We had her on feeds at night and would try oral feedings during the day. I gradually decreased the amount she was getting at night as she increased what she was eating during the day. It took a long time and she still does not seem to know what hunger is. For her, eating is a social thing, not a needed thing. She just turned three in Feb and started school. She was still getting her nutritional supplement through her tube when she started school, but is now only needing liquid. We tried to do bolus feeds after oral feeds, but she didn't tolerate it. She has some trouble with digestion so we went back to night feeds. If you can do bolus feeds, it might help to stretch the stomach a little. I know that with , part of the problems were lack of smell so she doesn't taste most foods. Try using Mrs. Dash to sprinkle on the foods that you offer. We also put ketchup or ranch dressing on some things. She also likes steak sauce or BBQ sauce on foods. Sometimes the things we mix together for her are not things we would eat, but she does so we just do it. Also, remember that they have not done this for a long time, if ever and the muscles that they need to swallow are not built up like in another child. They will tire easier, but that will get better. Try to make it fun and encourage them to take just one more bite when they say finished. That way they don't think they win and don't have to do it. When would tell us finished, we would not let her up until she took that one more bite. She would get really mad sometimes, but it really worked and then she just did it with no tantrum. Try to keep track of how many bites they are taking each time and gradually increase the bites, even if it is only by one bite. It takes time, but they will get there. Keep trying and remember that sooner or later they will get it and start doing more. Hope this helps. Mom to 3 yrs CHARGE kibest wrote: Hi everyone, I have a question for all of you about my daughter, Abby (18 months). She has had a g-tube since she was 2 months old. In January she passed her swallow study for purees and nectar-thick foods! Yea!!! She is interested in trying any foods that she is offered...the problem is that she really doesn't want more than a few bites of anything. She doesn't like baby food at all, but she will eat a little bit of mashed potates, pureed sweet potatoes, and anything with strong salty tastes. She also LOVES cheese puffs. My thought is that she really isn't hungry (since she is still tube fed)and doesn't associate food with hunger. How do you start the process of increasing the amount taken by mouth when your child is still using a feeding tube? I would appreciate any input you could give me....thanks!! Kimesha Northway CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 I am in a little bit of a different situation, but a similar one. My son is almost 9 and just beginning to eat. He was cleared 2 years ago to eat honey thick, but couldn't eat enough because the swallow wasn't strong enough, almost like they need practice and repetition before they will want to do more, that's the first part. The second part is the hunger. When my son became 10 pounds over weight and was at a good place with his abilities, which was recent, we cut the tube feeding where he was getting almost 2,000 calories (about 200 oral and 1800 tube - he was actually getting too many calories by tube), to 1300 calories by tube. He became hungry for the first time. He didn't know what the feeling was at first, he actually thought he was sick. Then he ate icecream and said " wow, I feel much better, guess all I needed to do was eat " . Now he knows what hunger is, but still doesn't always recognize fullness, but is getting better at it. My suggestion to you, is if you think your daughter is a good weight to stand to loose a few pounds, let her get hungry but not all at once, because she won't understand that. Talk to your GI (if they are useful, some are not), or your feeding therapist and start with things she will definitely eat. With my son, I can reason with him and he understands the process and what he is suppose to do, it's harder with a little one, and I never had the opportunity at that age to be able to do it. You can start replacing calories with water to keep her hydrated, but seek the advice of your GI or nutritionist to do it. Get a starting weight and monitor her closely. You can't push. Believe me, she will do it when she is good and ready. You can just encourage her by cutting the calories by tube and offering her a meal schedule. If you push her to do it she will most likely resist. Keep me posted on your progress. I'll be curious. My son just decided he was good and ready to do it, 2 years after he was actually able to do it. Good Luck Debbie Matasker mom to w/charge almost 9, 11, andra 6 weaning from g-tube Hi everyone, I have a question for all of you about my daughter, Abby (18 months). She has had a g-tube since she was 2 months old. In January she passed her swallow study for purees and nectar-thick foods! Yea!!! She is interested in trying any foods that she is offered...the problem is that she really doesn't want more than a few bites of anything. She doesn't like baby food at all, but she will eat a little bit of mashed potates, pureed sweet potatoes, and anything with strong salty tastes. She also LOVES cheese puffs. My thought is that she really isn't hungry (since she is still tube fed)and doesn't associate food with hunger. How do you start the process of increasing the amount taken by mouth when your child is still using a feeding tube? I would appreciate any input you could give me....thanks!! Kimesha Northway CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 I am in a little bit of a different situation, but a similar one. My son is almost 9 and just beginning to eat. He was cleared 2 years ago to eat honey thick, but couldn't eat enough because the swallow wasn't strong enough, almost like they need practice and repetition before they will want to do more, that's the first part. The second part is the hunger. When my son became 10 pounds over weight and was at a good place with his abilities, which was recent, we cut the tube feeding where he was getting almost 2,000 calories (about 200 oral and 1800 tube - he was actually getting too many calories by tube), to 1300 calories by tube. He became hungry for the first time. He didn't know what the feeling was at first, he actually thought he was sick. Then he ate icecream and said " wow, I feel much better, guess all I needed to do was eat " . Now he knows what hunger is, but still doesn't always recognize fullness, but is getting better at it. My suggestion to you, is if you think your daughter is a good weight to stand to loose a few pounds, let her get hungry but not all at once, because she won't understand that. Talk to your GI (if they are useful, some are not), or your feeding therapist and start with things she will definitely eat. With my son, I can reason with him and he understands the process and what he is suppose to do, it's harder with a little one, and I never had the opportunity at that age to be able to do it. You can start replacing calories with water to keep her hydrated, but seek the advice of your GI or nutritionist to do it. Get a starting weight and monitor her closely. You can't push. Believe me, she will do it when she is good and ready. You can just encourage her by cutting the calories by tube and offering her a meal schedule. If you push her to do it she will most likely resist. Keep me posted on your progress. I'll be curious. My son just decided he was good and ready to do it, 2 years after he was actually able to do it. Good Luck Debbie Matasker mom to w/charge almost 9, 11, andra 6 weaning from g-tube Hi everyone, I have a question for all of you about my daughter, Abby (18 months). She has had a g-tube since she was 2 months old. In January she passed her swallow study for purees and nectar-thick foods! Yea!!! She is interested in trying any foods that she is offered...the problem is that she really doesn't want more than a few bites of anything. She doesn't like baby food at all, but she will eat a little bit of mashed potates, pureed sweet potatoes, and anything with strong salty tastes. She also LOVES cheese puffs. My thought is that she really isn't hungry (since she is still tube fed)and doesn't associate food with hunger. How do you start the process of increasing the amount taken by mouth when your child is still using a feeding tube? I would appreciate any input you could give me....thanks!! Kimesha Northway CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hi- My daughter still gets pediasure through her tube for calories, but she eats all meals by mouth. We started off by taking her off night feeds. For a child to feel hungry they must have an empty belly. Before Makenna was even ready for foods we had her on bolus only. She now eats meals first and gets a bolus of pediasure after breakfast and after dinner. It is important to offer the food first because she is full after the tube feeding. She over ate for thefirst time two weeks ago. She just couldn't seem to get enough food. When I went to tube feed her she cried and pointed to her belly. So I stopped the tube feed. She just laid on the couch for awhile moaning and rubbing her belly. We have a hard time getting her to eat a well balanced meal, so we have opted to stay with bolus feeds for awhile. Plus she is 5 and only weighs 30lbs. , mom to Makenna -- In CHARGE , " kibest " wrote: > > Hi everyone, > > I have a question for all of you about my daughter, Abby (18 months). > She has had a g-tube since she was 2 months old. In January she > passed her swallow study for purees and nectar-thick foods! Yea!!! > She is interested in trying any foods that she is offered...the > problem is that she really doesn't want more than a few bites of > anything. She doesn't like baby food at all, but she will eat a > little bit of mashed potates, pureed sweet potatoes, and anything with > strong salty tastes. She also LOVES cheese puffs. My thought is that > she really isn't hungry (since she is still tube fed)and doesn't > associate food with hunger. How do you start the process of > increasing the amount taken by mouth when your child is still using a > feeding tube? I would appreciate any input you could give > me....thanks!! > > Kimesha Northway > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hi- My daughter still gets pediasure through her tube for calories, but she eats all meals by mouth. We started off by taking her off night feeds. For a child to feel hungry they must have an empty belly. Before Makenna was even ready for foods we had her on bolus only. She now eats meals first and gets a bolus of pediasure after breakfast and after dinner. It is important to offer the food first because she is full after the tube feeding. She over ate for thefirst time two weeks ago. She just couldn't seem to get enough food. When I went to tube feed her she cried and pointed to her belly. So I stopped the tube feed. She just laid on the couch for awhile moaning and rubbing her belly. We have a hard time getting her to eat a well balanced meal, so we have opted to stay with bolus feeds for awhile. Plus she is 5 and only weighs 30lbs. , mom to Makenna -- In CHARGE , " kibest " wrote: > > Hi everyone, > > I have a question for all of you about my daughter, Abby (18 months). > She has had a g-tube since she was 2 months old. In January she > passed her swallow study for purees and nectar-thick foods! Yea!!! > She is interested in trying any foods that she is offered...the > problem is that she really doesn't want more than a few bites of > anything. She doesn't like baby food at all, but she will eat a > little bit of mashed potates, pureed sweet potatoes, and anything with > strong salty tastes. She also LOVES cheese puffs. My thought is that > she really isn't hungry (since she is still tube fed)and doesn't > associate food with hunger. How do you start the process of > increasing the amount taken by mouth when your child is still using a > feeding tube? I would appreciate any input you could give > me....thanks!! > > Kimesha Northway > Quote Link to comment Share on other sites More sharing options...
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