Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 You might try Polycose. It is a powder that may be added to food and frinks to add calories without changing the taste. Your pharmacist will probably have to order it for you. , Mom to 11wocf, Nikki 9wocf, Luke 6 wocf, 4wcf > Adam is 10 months old but barely weighs 14 pounds. He has acid reflux > (prilosec twice daily and urecholine three times a day) -- we make > sure not to freak out when he throws up, so now when ever he does it > he just smiles at us as we clean him up and then cries as we change > his clothes AGAIN! He has now been on Urso 250mg, half a tablet every > morning for his liver for almost two months. He also takes three > ultrase enzyme capsules with each feeding (thank heaven/scandipharm > for CAREFIRST for CF). He hates the #3 baby foods. He acts like he's > choking on those tiny peices of carrots and potatoes, but he LOVES my > cream of chicken soup! > > What do I do? Any suggestions on how to put the pounds on him? The > nutritionist at the clinic suggested in November that we mix his > formula 24cal/oz and we add 1/4 tsp of veggie oil to his solids (2-3 > times a day). Still it doesn't seem to be making a lot of difference. > > He's at the 10th percentile for length but falling farther and > farther away from the weight charting. I put him in clothes that are > 6-9 or 12mo sizes and they fit great in the legs (length) but barely > stay up at his waist! > > I'm so frustrated!! Please advise! > > Thanks in advance, > Crystal > mom to Adam 10mo wcf, le 3yr nocf. > > p.s. maybe I'm a little touchy about weight too, since le > weighed in at 42 lbs at her 3 yr checkup in November. She's going to > be an athlete the way she's built! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Crystal have you tried mashed potatoes made with half n half and butter.Very fast and loaded with calories and fat it tastes good too kind of sweet.The texture of #3 foods is like (excuse me here) barf Maybe starting on mashed table foods macaroni/butter,veggies w cream or cheese sauce(cheese soup) would help.Rebekah used pregestimil 24cal with a scoop of powder pregestimil added to each 3 oz bottle and 2 -3 teaspoons of polycose or scandical.Rebekah regularly had 40 to 45 cal. per ounce of formula plus breastfeeding full time.Have the doctors talked about a nissen fundoplication for reflux? I have 8 kiddos and have been thru lots let me know if I can help.BeckyB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Crystal have you tried mashed potatoes made with half n half and butter.Very fast and loaded with calories and fat it tastes good too kind of sweet.The texture of #3 foods is like (excuse me here) barf Maybe starting on mashed table foods macaroni/butter,veggies w cream or cheese sauce(cheese soup) would help.Rebekah used pregestimil 24cal with a scoop of powder pregestimil added to each 3 oz bottle and 2 -3 teaspoons of polycose or scandical.Rebekah regularly had 40 to 45 cal. per ounce of formula plus breastfeeding full time.Have the doctors talked about a nissen fundoplication for reflux? I have 8 kiddos and have been thru lots let me know if I can help.BeckyB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Hi Crystal, I have a 2 1/2 year old daughter with CF and acid reflux. Your description of how Adam reacts to stage 3 food is exactly how Emma reacted/reacts to these foods. I've told her story a million times now so I will make the details as brief as possible (not real good at this). I like to give some details so you can draw parallels and hopefully use our experience to your benefit. If you have questions, just e-mail me back. Emma was diagnosed with silent reflux, given meds, had no affect. Slowly over several months her food and fluid intake decreased to the point that she finally refused to eat or drink. She was hospitalized and given an NG tube. During the time she was slowly eating less and less, she continued to gain weight (just not in any large volume) although she was not on any of the weight charts (she was underweight at birth so she had a lot of catching up to do anyway). We added one tablespoon of margarine to every four ounces of meat or veggies she ate and a tablespoon of Scandical for every four ounces of yogurt, fruit or desert. We did not use oil as we were told not to for fear that it would aspirate into her lungs when she vomits. We also increased her formula to what I believe was either 32 or 36 cal/oz (it's been a while but I know it was around there as she was drinking so little that the 24 calorie/oz formula didn't do much). This was at our doctors direction. After she was hospitalized and all her meds switched and given the NG tube, she started eating again. That's when we actually started to see the vomiting but this was fine with us as this meant she was actually getting food and she started gaining weight. It's a year and a half later and fatso (I say this lovingly and with great pride) is now at the 50% percentile and in comparison to my older daughter is growing much more quickly and growing out of her clothes like mad (my older daughter was still wearing 2T pants at the age of four until I finally passed them onto to Emma who fit into them right away). Does she still have problems with eating? You betcha. Her biggest problem is textures. She gags (which ultimately leads to vomiting) anytime we give her something which is thick or if we give her something with has small pieces of food in it. How have we dealt with this issue? Emma has been regularly going to see the feeding team at our hospital (Children's Hospital of Philadelphia). This past summer, we put our lives on hold for three weeks so she could have extensive food therapy. In a nutshell, their advise is the following: 1. Don't use the stage 3 baby foods. Many kids with feeding problems have difficulties eating these due to the thickness and pieces of food in it. 2. They recommended that we discontinue the use of all jarred baby foods and make our own. Why? The jar baby foods are very bland and children with eating problems have difficulties adjusting to the taste of regular food. Keeping them on the jar foods, may mean further difficulties down the road. As a result, we now puree all of Emma's food ourselves. Her list of foods isn't extensive because introducing her to new foods is difficult. It generally leads to gagging and puking. It takes a long time for her to adjust to a new food. 3. When feeding her, we are not supposed to react to any negative behavior which includes vomiting. No comments at all positive or negative. It sounds like this is what you are doing already. 4. Continue to add margarine to her meat and veggies. We add nothing to her fruit and yogurt since she has been gaining weight so well, we were able to take her off the Scanidcal and Duocal (we used this for a brief period of time ... it adds more calories than the Scandical) about six to nine months ago. 5. Use whole milk, half and half or heavy cream for pureeing. Heavy cream adds a ton of calories. Emma's weight shot up like a rocket when we started using this to puree her foods. However, it also caused her to vomit a lot more often than usual (her baseline is around once ever two days). I felt the pain of her vomiting constantly wasn't worth the weight gain. The same thing happened when we used half and half. We now use whole milk and this works well. She still vomits here and there but we haven't been able to stop that totally. 6. We were also told to give her yogurt at least once a day. They indicated that this can help decrease the vomiting due to the acidipholis (make sure any yogurt you use has live active yogurt cultures which is what acidipholis is/resides). I believe the reason is the same reason that is used when your child is put on antibiotics. It helps restore good bacteria in the gut which acid and/or antibiotics can destroy. These good bacteria in turn help settle the stomach. The brands of yogurt they recommend are Le Creme which has the highest calories and is very smooth (no chunks of anything) or the YoBaby yogurt (slightly less calories than Le Creme), both of which are made with whole milk and not 2% or fat free milk like the rest of the yogurts out there. If these aren't available in your area, just look for a whole milk yogurt. 7. Originally, Emma had problems when we feed her more than four ounces of food. More than that and she would vomit. As a result, in order to get enough calories in her, we scheduled her meals so she had a minimum of three hours between the start of each meal. This was to allow her stomach time to empty out properly between meals. If we feed her any sooner, it was almost 100% guaranteed, she would vomit. As a result, we feed her four times a day, four ounces at each meal. During that time, she was also being supplemented at night with night feeds to insure she got enough calories and fluids. Emma now eats 5 1/2 ounces of food at a sitting and 2 1/2 ounces of Carnation Instant Breakfast. Her calorie intake is so good, we could take her off night feeds but her fluid intake still isn't high enough. If we take her off, she shows signs of dehydration so we continue to give her peptamen junior at night. All of her food is still pureed. We have had very little success graduating onto normal solid food but she is slowly showing signs that she is changing. She can now eat stick pretzels and goldfish (the crackers) without vomiting. This is quite a change from this summer when she would always vomit when eating any of this type of food. I am hoping that the presence of her older sister and the fact that she is now at the age when she wants to emulate her will help. We'll see what happens. Good Luck!!! Don't let it get you down. I cried almost every day about Emma's eating until she was finally hospitalized. I haven't cried once about this since. The NG tube really helped take the pressure off and let us focus on just letting her learn how to eat rather than trying to force her to eat just to keep her weight up. This was the best thing we did. She now has a regular G tube. Anyway, I wrote a lot more than I thought I would. I hope this is helpful. Talk to you later, - mom to Emma 2 1/2 years w/cf and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Hi Crystal, I have a 2 1/2 year old daughter with CF and acid reflux. Your description of how Adam reacts to stage 3 food is exactly how Emma reacted/reacts to these foods. I've told her story a million times now so I will make the details as brief as possible (not real good at this). I like to give some details so you can draw parallels and hopefully use our experience to your benefit. If you have questions, just e-mail me back. Emma was diagnosed with silent reflux, given meds, had no affect. Slowly over several months her food and fluid intake decreased to the point that she finally refused to eat or drink. She was hospitalized and given an NG tube. During the time she was slowly eating less and less, she continued to gain weight (just not in any large volume) although she was not on any of the weight charts (she was underweight at birth so she had a lot of catching up to do anyway). We added one tablespoon of margarine to every four ounces of meat or veggies she ate and a tablespoon of Scandical for every four ounces of yogurt, fruit or desert. We did not use oil as we were told not to for fear that it would aspirate into her lungs when she vomits. We also increased her formula to what I believe was either 32 or 36 cal/oz (it's been a while but I know it was around there as she was drinking so little that the 24 calorie/oz formula didn't do much). This was at our doctors direction. After she was hospitalized and all her meds switched and given the NG tube, she started eating again. That's when we actually started to see the vomiting but this was fine with us as this meant she was actually getting food and she started gaining weight. It's a year and a half later and fatso (I say this lovingly and with great pride) is now at the 50% percentile and in comparison to my older daughter is growing much more quickly and growing out of her clothes like mad (my older daughter was still wearing 2T pants at the age of four until I finally passed them onto to Emma who fit into them right away). Does she still have problems with eating? You betcha. Her biggest problem is textures. She gags (which ultimately leads to vomiting) anytime we give her something which is thick or if we give her something with has small pieces of food in it. How have we dealt with this issue? Emma has been regularly going to see the feeding team at our hospital (Children's Hospital of Philadelphia). This past summer, we put our lives on hold for three weeks so she could have extensive food therapy. In a nutshell, their advise is the following: 1. Don't use the stage 3 baby foods. Many kids with feeding problems have difficulties eating these due to the thickness and pieces of food in it. 2. They recommended that we discontinue the use of all jarred baby foods and make our own. Why? The jar baby foods are very bland and children with eating problems have difficulties adjusting to the taste of regular food. Keeping them on the jar foods, may mean further difficulties down the road. As a result, we now puree all of Emma's food ourselves. Her list of foods isn't extensive because introducing her to new foods is difficult. It generally leads to gagging and puking. It takes a long time for her to adjust to a new food. 3. When feeding her, we are not supposed to react to any negative behavior which includes vomiting. No comments at all positive or negative. It sounds like this is what you are doing already. 4. Continue to add margarine to her meat and veggies. We add nothing to her fruit and yogurt since she has been gaining weight so well, we were able to take her off the Scanidcal and Duocal (we used this for a brief period of time ... it adds more calories than the Scandical) about six to nine months ago. 5. Use whole milk, half and half or heavy cream for pureeing. Heavy cream adds a ton of calories. Emma's weight shot up like a rocket when we started using this to puree her foods. However, it also caused her to vomit a lot more often than usual (her baseline is around once ever two days). I felt the pain of her vomiting constantly wasn't worth the weight gain. The same thing happened when we used half and half. We now use whole milk and this works well. She still vomits here and there but we haven't been able to stop that totally. 6. We were also told to give her yogurt at least once a day. They indicated that this can help decrease the vomiting due to the acidipholis (make sure any yogurt you use has live active yogurt cultures which is what acidipholis is/resides). I believe the reason is the same reason that is used when your child is put on antibiotics. It helps restore good bacteria in the gut which acid and/or antibiotics can destroy. These good bacteria in turn help settle the stomach. The brands of yogurt they recommend are Le Creme which has the highest calories and is very smooth (no chunks of anything) or the YoBaby yogurt (slightly less calories than Le Creme), both of which are made with whole milk and not 2% or fat free milk like the rest of the yogurts out there. If these aren't available in your area, just look for a whole milk yogurt. 7. Originally, Emma had problems when we feed her more than four ounces of food. More than that and she would vomit. As a result, in order to get enough calories in her, we scheduled her meals so she had a minimum of three hours between the start of each meal. This was to allow her stomach time to empty out properly between meals. If we feed her any sooner, it was almost 100% guaranteed, she would vomit. As a result, we feed her four times a day, four ounces at each meal. During that time, she was also being supplemented at night with night feeds to insure she got enough calories and fluids. Emma now eats 5 1/2 ounces of food at a sitting and 2 1/2 ounces of Carnation Instant Breakfast. Her calorie intake is so good, we could take her off night feeds but her fluid intake still isn't high enough. If we take her off, she shows signs of dehydration so we continue to give her peptamen junior at night. All of her food is still pureed. We have had very little success graduating onto normal solid food but she is slowly showing signs that she is changing. She can now eat stick pretzels and goldfish (the crackers) without vomiting. This is quite a change from this summer when she would always vomit when eating any of this type of food. I am hoping that the presence of her older sister and the fact that she is now at the age when she wants to emulate her will help. We'll see what happens. Good Luck!!! Don't let it get you down. I cried almost every day about Emma's eating until she was finally hospitalized. I haven't cried once about this since. The NG tube really helped take the pressure off and let us focus on just letting her learn how to eat rather than trying to force her to eat just to keep her weight up. This was the best thing we did. She now has a regular G tube. Anyway, I wrote a lot more than I thought I would. I hope this is helpful. Talk to you later, - mom to Emma 2 1/2 years w/cf and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Hi Crystal, I have a 2 1/2 year old daughter with CF and acid reflux. Your description of how Adam reacts to stage 3 food is exactly how Emma reacted/reacts to these foods. I've told her story a million times now so I will make the details as brief as possible (not real good at this). I like to give some details so you can draw parallels and hopefully use our experience to your benefit. If you have questions, just e-mail me back. Emma was diagnosed with silent reflux, given meds, had no affect. Slowly over several months her food and fluid intake decreased to the point that she finally refused to eat or drink. She was hospitalized and given an NG tube. During the time she was slowly eating less and less, she continued to gain weight (just not in any large volume) although she was not on any of the weight charts (she was underweight at birth so she had a lot of catching up to do anyway). We added one tablespoon of margarine to every four ounces of meat or veggies she ate and a tablespoon of Scandical for every four ounces of yogurt, fruit or desert. We did not use oil as we were told not to for fear that it would aspirate into her lungs when she vomits. We also increased her formula to what I believe was either 32 or 36 cal/oz (it's been a while but I know it was around there as she was drinking so little that the 24 calorie/oz formula didn't do much). This was at our doctors direction. After she was hospitalized and all her meds switched and given the NG tube, she started eating again. That's when we actually started to see the vomiting but this was fine with us as this meant she was actually getting food and she started gaining weight. It's a year and a half later and fatso (I say this lovingly and with great pride) is now at the 50% percentile and in comparison to my older daughter is growing much more quickly and growing out of her clothes like mad (my older daughter was still wearing 2T pants at the age of four until I finally passed them onto to Emma who fit into them right away). Does she still have problems with eating? You betcha. Her biggest problem is textures. She gags (which ultimately leads to vomiting) anytime we give her something which is thick or if we give her something with has small pieces of food in it. How have we dealt with this issue? Emma has been regularly going to see the feeding team at our hospital (Children's Hospital of Philadelphia). This past summer, we put our lives on hold for three weeks so she could have extensive food therapy. In a nutshell, their advise is the following: 1. Don't use the stage 3 baby foods. Many kids with feeding problems have difficulties eating these due to the thickness and pieces of food in it. 2. They recommended that we discontinue the use of all jarred baby foods and make our own. Why? The jar baby foods are very bland and children with eating problems have difficulties adjusting to the taste of regular food. Keeping them on the jar foods, may mean further difficulties down the road. As a result, we now puree all of Emma's food ourselves. Her list of foods isn't extensive because introducing her to new foods is difficult. It generally leads to gagging and puking. It takes a long time for her to adjust to a new food. 3. When feeding her, we are not supposed to react to any negative behavior which includes vomiting. No comments at all positive or negative. It sounds like this is what you are doing already. 4. Continue to add margarine to her meat and veggies. We add nothing to her fruit and yogurt since she has been gaining weight so well, we were able to take her off the Scanidcal and Duocal (we used this for a brief period of time ... it adds more calories than the Scandical) about six to nine months ago. 5. Use whole milk, half and half or heavy cream for pureeing. Heavy cream adds a ton of calories. Emma's weight shot up like a rocket when we started using this to puree her foods. However, it also caused her to vomit a lot more often than usual (her baseline is around once ever two days). I felt the pain of her vomiting constantly wasn't worth the weight gain. The same thing happened when we used half and half. We now use whole milk and this works well. She still vomits here and there but we haven't been able to stop that totally. 6. We were also told to give her yogurt at least once a day. They indicated that this can help decrease the vomiting due to the acidipholis (make sure any yogurt you use has live active yogurt cultures which is what acidipholis is/resides). I believe the reason is the same reason that is used when your child is put on antibiotics. It helps restore good bacteria in the gut which acid and/or antibiotics can destroy. These good bacteria in turn help settle the stomach. The brands of yogurt they recommend are Le Creme which has the highest calories and is very smooth (no chunks of anything) or the YoBaby yogurt (slightly less calories than Le Creme), both of which are made with whole milk and not 2% or fat free milk like the rest of the yogurts out there. If these aren't available in your area, just look for a whole milk yogurt. 7. Originally, Emma had problems when we feed her more than four ounces of food. More than that and she would vomit. As a result, in order to get enough calories in her, we scheduled her meals so she had a minimum of three hours between the start of each meal. This was to allow her stomach time to empty out properly between meals. If we feed her any sooner, it was almost 100% guaranteed, she would vomit. As a result, we feed her four times a day, four ounces at each meal. During that time, she was also being supplemented at night with night feeds to insure she got enough calories and fluids. Emma now eats 5 1/2 ounces of food at a sitting and 2 1/2 ounces of Carnation Instant Breakfast. Her calorie intake is so good, we could take her off night feeds but her fluid intake still isn't high enough. If we take her off, she shows signs of dehydration so we continue to give her peptamen junior at night. All of her food is still pureed. We have had very little success graduating onto normal solid food but she is slowly showing signs that she is changing. She can now eat stick pretzels and goldfish (the crackers) without vomiting. This is quite a change from this summer when she would always vomit when eating any of this type of food. I am hoping that the presence of her older sister and the fact that she is now at the age when she wants to emulate her will help. We'll see what happens. Good Luck!!! Don't let it get you down. I cried almost every day about Emma's eating until she was finally hospitalized. I haven't cried once about this since. The NG tube really helped take the pressure off and let us focus on just letting her learn how to eat rather than trying to force her to eat just to keep her weight up. This was the best thing we did. She now has a regular G tube. Anyway, I wrote a lot more than I thought I would. I hope this is helpful. Talk to you later, - mom to Emma 2 1/2 years w/cf and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 My son also struggled with weight. He was 11 weeks premature and had the meconium ileus blockage. We went through so many things to try to get Ashton to gain weight. He breastfed most of the time (keep that up as long as you can!!) but some bottles with expressed milk to which we added pregestimil, polycose and canola oil. He didn't like it much at all. In fact, he stopped eating altogether and now is fed exclusively through a g-tube. Before that was put in, we gave him solids with margarine added as well as rice cereal to bulk it up. My son also hated the #3 foods. We gave him lots of avacado--tons of fat! My best advice--keep him excited about food. Don't force him to eat anything and if he enjoys breastfeeding, keep it up. I truly think if I hadn't tried so hard (too hard) to get him to eat, he would still enjoy food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 My son also struggled with weight. He was 11 weeks premature and had the meconium ileus blockage. We went through so many things to try to get Ashton to gain weight. He breastfed most of the time (keep that up as long as you can!!) but some bottles with expressed milk to which we added pregestimil, polycose and canola oil. He didn't like it much at all. In fact, he stopped eating altogether and now is fed exclusively through a g-tube. Before that was put in, we gave him solids with margarine added as well as rice cereal to bulk it up. My son also hated the #3 foods. We gave him lots of avacado--tons of fat! My best advice--keep him excited about food. Don't force him to eat anything and if he enjoys breastfeeding, keep it up. I truly think if I hadn't tried so hard (too hard) to get him to eat, he would still enjoy food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 I am not sure exactly what you mean when you say travel. My daughter has had a G tube since April and before that she had an NG tube for nine months. We only use the g-tube at night to feed her so travel during the day is not impacted. We have gone to visit my mother-in-law and driven back at night after doing therapy and putting her on her night feeds. Emma's pump is transportable so we just hooked her up and put her in her car seat and off we went. It worked fine. Carrying her back into the house when we got home was a two person job. This past summer, my parents rented a cabin (not a very rustic cabin mind you) and we brought everything with us and did it all there without any problems. We have other feeding issues that make it difficult to travel (we have to puree all of Emma's food). Dealing with the g-tube is actually the easier of the issues to deal with. Emma doesn't even notice that she has the G-tube while she is sleeping. When she had the NG tube, it seemed to open up quite often and she would have stomach juices and formula all over her and the bed. That bothered her. Actualy the ensuing bath is probably what bothered her the most. It's been months since this has occurred. She also had problems when she is having serious digestive problems as the night feeds have made her vomit in bed (Emma has acid reflux). When the reflux is under control, this is not a problem at all. Other than that, it may have gotten wrapped around her neck once and she didn't even notice since it was lightly wrapped around her neck. Hope this helps answer some of you questions. - mom to Emma 2 years w/cf and acid reflux and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 I am not sure exactly what you mean when you say travel. My daughter has had a G tube since April and before that she had an NG tube for nine months. We only use the g-tube at night to feed her so travel during the day is not impacted. We have gone to visit my mother-in-law and driven back at night after doing therapy and putting her on her night feeds. Emma's pump is transportable so we just hooked her up and put her in her car seat and off we went. It worked fine. Carrying her back into the house when we got home was a two person job. This past summer, my parents rented a cabin (not a very rustic cabin mind you) and we brought everything with us and did it all there without any problems. We have other feeding issues that make it difficult to travel (we have to puree all of Emma's food). Dealing with the g-tube is actually the easier of the issues to deal with. Emma doesn't even notice that she has the G-tube while she is sleeping. When she had the NG tube, it seemed to open up quite often and she would have stomach juices and formula all over her and the bed. That bothered her. Actualy the ensuing bath is probably what bothered her the most. It's been months since this has occurred. She also had problems when she is having serious digestive problems as the night feeds have made her vomit in bed (Emma has acid reflux). When the reflux is under control, this is not a problem at all. Other than that, it may have gotten wrapped around her neck once and she didn't even notice since it was lightly wrapped around her neck. Hope this helps answer some of you questions. - mom to Emma 2 years w/cf and acid reflux and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2002 Report Share Posted December 21, 2002 I am not sure exactly what you mean when you say travel. My daughter has had a G tube since April and before that she had an NG tube for nine months. We only use the g-tube at night to feed her so travel during the day is not impacted. We have gone to visit my mother-in-law and driven back at night after doing therapy and putting her on her night feeds. Emma's pump is transportable so we just hooked her up and put her in her car seat and off we went. It worked fine. Carrying her back into the house when we got home was a two person job. This past summer, my parents rented a cabin (not a very rustic cabin mind you) and we brought everything with us and did it all there without any problems. We have other feeding issues that make it difficult to travel (we have to puree all of Emma's food). Dealing with the g-tube is actually the easier of the issues to deal with. Emma doesn't even notice that she has the G-tube while she is sleeping. When she had the NG tube, it seemed to open up quite often and she would have stomach juices and formula all over her and the bed. That bothered her. Actualy the ensuing bath is probably what bothered her the most. It's been months since this has occurred. She also had problems when she is having serious digestive problems as the night feeds have made her vomit in bed (Emma has acid reflux). When the reflux is under control, this is not a problem at all. Other than that, it may have gotten wrapped around her neck once and she didn't even notice since it was lightly wrapped around her neck. Hope this helps answer some of you questions. - mom to Emma 2 years w/cf and acid reflux and Isabelle 4 years wo/cf ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2002 Report Share Posted December 22, 2002 The g-tube was the best thing we ever did for our son. He gained weight very well on it. All his medicine goes in the tube as well. We have a pump that is on a battery pack that we can take anywhere-- airplane, restaurant, on the road, etc. It is the size of a small book. When he sleeps, he is fed and doesn't even notice it. It is great. > My daughter, who is 18 months old, also struggles with weight.She only likes > drinking bottles with formula/milk.I am always worried that she will not get > enough vitamins etc. I guess we are also a potential candidate for a g-tube. I > don't know much about these tubes. How does it work for example if you travel? > And don't the kids mind the tube while sleeping? > > Greetings from rainy Germany > Tana w Chri 3 years wocf and Mira 18 months wcf > > > J. schrieb: > > My son also struggled with weight. He was 11 weeks premature and had > > the meconium ileus blockage. We went through so many things to try > > to get Ashton to gain weight. He breastfed most of the time (keep > > that up as long as you can!!) but some bottles with expressed milk to > > which we added pregestimil, polycose and canola oil. He didn't like > > it much at all. In fact, he stopped eating altogether and now is fed > > exclusively through a g-tube. Before that was put in, we gave him > > solids with margarine added as well as rice cereal to bulk it up. My > > son also hated the #3 foods. We gave him lots of avacado--tons of > > fat! > > > > My best advice--keep him excited about food. Don't force him to eat > > anything and if he enjoys breastfeeding, keep it up. I truly think > > if I hadn't tried so hard (too hard) to get him to eat, he would > > still enjoy food. > > > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
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