Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hello to all, My daughter was born full term SGA 3#2oz 8-26-04. She was in the NICU for some time and sent home on the NG feeding tube. She was not gaining weight and was not a big fan of eating. Doctors switched her formula but didn't help. I could not deal with her not eating and looking to be in pain. Nothing worked so I begged for a referral to Children's Memorial Hospital. Sure enough the day before Thanksgiving she had surgery for malrotation of the intestines. The surgeons felt that this very well could be why she did not want to eat and did not digest her food, therefore always feeling full. While we were there the Genesists seen her and said they think she has RSS. This weight thing is killing me. She is now 3 months old and weighing 5# 2oz. Can anyone tell me how often they had to feed. Right now she is on 45 cc of 27 cal formula every 3 hrs. Most of the time we don't have to use the NG tube but feeding still seems like a battle. Also can anyone tell me approximately how much weight is usually gained? (Children w/o RSS usually gain an ounce a day) This is our first born and we are having a real difficult time dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi! First, welcome - you have found a really great group of people. Don't worry - you are not alone is the 2nd. My daughter Emerence is SGA possible mild RSS, born 2-14-03 at 4 lb 4 oz 14.25 " . Shis is my second child. Everyone here has been very helpful to me - I landed here last spring and went to the annual convention in July in Chicago. I recommend you save and make the trip or apply for a scholarship to help cover your funds. I learned quite a bit and got a consultation with Dr. Madeleine Harbison. I'm sure you will hear from a lot of others shortly! , mom to almost 5 and Emerence, 22 mo, 18 lb 11 oz, 28.5 " SGA, poss RSS > Hello to all, > > My daughter was born full term SGA 3#2oz 8-26-04. She was in the NICU for some time and sent home on the NG feeding tube. She was not gaining weight and was not a big fan of eating. Doctors switched her formula but didn't help. I could not deal with her not eating and looking to be in pain. Nothing worked so I begged for a referral to Children's Memorial Hospital. Sure enough the day before Thanksgiving she had surgery for malrotation of the intestines. The surgeons felt that this very well could be why she did not want to eat and did not digest her food, therefore always feeling full. While we were there the Genesists seen her and said they think she has RSS. > > This weight thing is killing me. She is now 3 months old and weighing 5# 2oz. Can anyone tell me how often they had to feed. Right now she is on 45 cc of 27 cal formula every 3 hrs. Most of the time we don't have to use the NG tube but feeding still seems like a battle. Also can anyone tell me approximately how much weight is usually gained? (Children w/o RSS usually gain an ounce a day) > > This is our first born and we are having a real difficult time dealing with this. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Marisa, My son Max is now 16, but at 8 months had the surgery for malrotated intestines, too. I wish I could say it helped his eating, but it did not. He had terrible reflux and had to be ng fed, then g-tube fed for years. I think that the malrotation was the beginning of a series of indications that he was having difficulty with the entire digestion process. Now, do I mean that this is the case for you? No. I just want you to be aware. Not many RSS kids have had malrotation, but it does pop up from time to time and Max's GIs for years have wondered if it is a possible minor trait of the syndrome. Welcome to our group. I'm glad you found us. You won't feel so lonely anymore. We may not have all the answers, but we do have great support and love. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi Marisa's mom, Welcome to our group. We can all relate to the frustration about poor weight gain with our kids. I wish I could say the same for myself - lol. I have an 11-year-old RSS son who wasn't officially diganosed until he was almost 10. He was born 12 weeks early weighing 15 oz. & was in the NICU for 7.5 months (longer than I was pregnant). It took him that long to get to an allowable discharge weight of 4.5 lbs. Your post brought back vivid memories of having to weigh him daily. I kept detailed records of how many calories we needed to give him at various weights, and I compared this to what you are giving Marisa now. was about her weight at 8 months old. Remember that we had no diagnosis for him at this time, other than failure to thrive. The doctors said he needed more calories to gain weight than the typical baby, especially due to the compromised breathing he had (he was on oxygen for 2.5 years). At Marisa's weight, needed 165 calories/kilo to gain weight. That amount gradually decreased over time, but it didn't get under 100 calories/kilo until he was 29 months old, weighing 20 lbs. When was the same size as Marisa, he was on continuous feeding via g-tube, consuming 460cc every 24 hours of 26 calorie formula (total of 399 calories per day). A month later, he went up to 28 calories/oz. formula for a total of 429 calories/day. His average weight gain at this time was less than .5 oz/day. Hope this information helped. was my first-born too. I have since had 2 more wonderful children who also have eating issues due to reflux and delayed emptying, but no RSS: - age 4 and - age 9.5 mos. is now 47 lbs. at 11 years old. Kim C. > Hello to all, > > My daughter was born full term SGA 3#2oz 8-26-04. She was in the NICU for some time and sent home on the NG feeding tube. She was not gaining weight and was not a big fan of eating. Doctors switched her formula but didn't help. I could not deal with her not eating and looking to be in pain. Nothing worked so I begged for a referral to Children's Memorial Hospital. Sure enough the day before Thanksgiving she had surgery for malrotation of the intestines. The surgeons felt that this very well could be why she did not want to eat and did not digest her food, therefore always feeling full. While we were there the Genesists seen her and said they think she has RSS. > > This weight thing is killing me. She is now 3 months old and weighing 5# 2oz. Can anyone tell me how often they had to feed. Right now she is on 45 cc of 27 cal formula every 3 hrs. Most of the time we don't have to use the NG tube but feeding still seems like a battle. Also can anyone tell me approximately how much weight is usually gained? (Children w/o RSS usually gain an ounce a day) > > This is our first born and we are having a real difficult time dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 How long was your son on the G tube? did he do better with solids? Kacey171 wrote: Hi Marisa's mom, Welcome to our group. We can all relate to the frustration about poor weight gain with our kids. I wish I could say the same for myself - lol. I have an 11-year-old RSS son who wasn't officially diganosed until he was almost 10. He was born 12 weeks early weighing 15 oz. & was in the NICU for 7.5 months (longer than I was pregnant). It took him that long to get to an allowable discharge weight of 4.5 lbs. Your post brought back vivid memories of having to weigh him daily. I kept detailed records of how many calories we needed to give him at various weights, and I compared this to what you are giving Marisa now. was about her weight at 8 months old. Remember that we had no diagnosis for him at this time, other than failure to thrive. The doctors said he needed more calories to gain weight than the typical baby, especially due to the compromised breathing he had (he was on oxygen for 2.5 years). At Marisa's weight, needed 165 calories/kilo to gain weight. That amount gradually decreased over time, but it didn't get under 100 calories/kilo until he was 29 months old, weighing 20 lbs. When was the same size as Marisa, he was on continuous feeding via g-tube, consuming 460cc every 24 hours of 26 calorie formula (total of 399 calories per day). A month later, he went up to 28 calories/oz. formula for a total of 429 calories/day. His average weight gain at this time was less than .5 oz/day. Hope this information helped. was my first-born too. I have since had 2 more wonderful children who also have eating issues due to reflux and delayed emptying, but no RSS: - age 4 and - age 9.5 mos. is now 47 lbs. at 11 years old. Kim C. > Hello to all, > > My daughter was born full term SGA 3#2oz 8-26-04. She was in the NICU for some time and sent home on the NG feeding tube. She was not gaining weight and was not a big fan of eating. Doctors switched her formula but didn't help. I could not deal with her not eating and looking to be in pain. Nothing worked so I begged for a referral to Children's Memorial Hospital. Sure enough the day before Thanksgiving she had surgery for malrotation of the intestines. The surgeons felt that this very well could be why she did not want to eat and did not digest her food, therefore always feeling full. While we were there the Genesists seen her and said they think she has RSS. > > This weight thing is killing me. She is now 3 months old and weighing 5# 2oz. Can anyone tell me how often they had to feed. Right now she is on 45 cc of 27 cal formula every 3 hrs. Most of the time we don't have to use the NG tube but feeding still seems like a battle. Also can anyone tell me approximately how much weight is usually gained? (Children w/o RSS usually gain an ounce a day) > > This is our first born and we are having a real difficult time dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 still has a g-tube at 11 years old. On top of having the RSS trait of not wanting to eat, he was severely traumatized in the hospital all those months and very sick, so he missed the crucial steps to oral motor skills. He got the g-tube when he was 6 months old. He doesn't like to eat by mouth at all, but has the ability to. He gets 95% of his calories via g-tube & eats small things here & there. Other than the g-tube, being small, and having kyphosis (wears a back brace which nobody can really tell), he is a typical kid & others don't know of all the problems he has had. Kim C. > How long was your son on the G tube? did he do better with solids? > > Kacey171 <capuano_k@p...> wrote: > Hi Marisa's mom, > > Welcome to our group. We can all relate to the frustration about poor weight gain with our > kids. I wish I could say the same for myself - lol. > > I have an 11-year-old RSS son who wasn't officially diganosed until he was almost 10. He > was born 12 weeks early weighing 15 oz. & was in the NICU for 7.5 months (longer than I > was pregnant). It took him that long to get to an allowable discharge weight of 4.5 lbs. > Your post brought back vivid memories of having to weigh him daily. I kept detailed > records of how many calories we needed to give him at various weights, and I compared > this to what you are giving Marisa now. > > was about her weight at 8 months old. Remember that we had no diagnosis for > him at this time, other than failure to thrive. The doctors said he needed more calories to > gain weight than the typical baby, especially due to the compromised breathing he had (he > was on oxygen for 2.5 years). At Marisa's weight, needed 165 calories/kilo to > gain weight. That amount gradually decreased over time, but it didn't get under 100 > calories/kilo until he was 29 months old, weighing 20 lbs. When was the same > size as Marisa, he was on continuous feeding via g-tube, consuming 460cc every 24 hours > of 26 calorie formula (total of 399 calories per day). A month later, he went up to 28 > calories/oz. formula for a total of 429 calories/day. His average weight gain at this time > was less than .5 oz/day. Hope this information helped. > > was my first-born too. I have since had 2 more wonderful children who also have > eating issues due to reflux and delayed emptying, but no RSS: - age 4 and - > age 9.5 mos. is now 47 lbs. at 11 years old. > > Kim C. > > > > > Hello to all, > > > > My daughter was born full term SGA 3#2oz 8-26-04. She was in the NICU for some time > and sent home on the NG feeding tube. She was not gaining weight and was not a big fan > of eating. Doctors switched her formula but didn't help. I could not deal with her not > eating and looking to be in pain. Nothing worked so I begged for a referral to Children's > Memorial Hospital. Sure enough the day before Thanksgiving she had surgery for > malrotation of the intestines. The surgeons felt that this very well could be why she did > not want to eat and did not digest her food, therefore always feeling full. While we were > there the Genesists seen her and said they think she has RSS. > > > > This weight thing is killing me. She is now 3 months old and weighing 5# 2oz. Can > anyone tell me how often they had to feed. Right now she is on 45 cc of 27 cal formula > every 3 hrs. Most of the time we don't have to use the NG tube but feeding still seems like > a battle. Also can anyone tell me approximately how much weight is usually gained? > (Children w/o RSS usually gain an ounce a day) > > > > This is our first born and we are having a real difficult time dealing with this. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Thanks for the information, I really do greatly appreciate you sharing. Sally Dattulo Mom to Marisa Kacey171 wrote: still has a g-tube at 11 years old. On top of having the RSS trait of not wanting to eat, he was severely traumatized in the hospital all those months and very sick, so he missed the crucial steps to oral motor skills. He got the g-tube when he was 6 months old. He doesn't like to eat by mouth at all, but has the ability to. He gets 95% of his calories via g-tube & eats small things here & there. Other than the g-tube, being small, and having kyphosis (wears a back brace which nobody can really tell), he is a typical kid & others don't know of all the problems he has had. Kim C. > How long was your son on the G tube? did he do better with solids? > > Kacey171 <capuano_k@p...> wrote: > Hi Marisa's mom, > > Welcome to our group. We can all relate to the frustration about poor weight gain with our > kids. I wish I could say the same for myself - lol. > > I have an 11-year-old RSS son who wasn't officially diganosed until he was almost 10. He > was born 12 weeks early weighing 15 oz. & was in the NICU for 7.5 months (longer than I > was pregnant). It took him that long to get to an allowable discharge weight of 4.5 lbs. > Your post brought back vivid memories of having to weigh him daily. I kept detailed > records of how many calories we needed to give him at various weights, and I compared > this to what you are giving Marisa now. > > was about her weight at 8 months old. Remember that we had no diagnosis for > him at this time, other than failure to thrive. The doctors said he needed more calories to > gain weight than the typical baby, especially due to the compromised breathing he had (he > was on oxygen for 2.5 years). At Marisa's weight, needed 165 calories/kilo to > gain weight. That amount gradually decreased over time, but it didn't get under 100 > calories/kilo until he was 29 months old, weighing 20 lbs. When was the same > size as Marisa, he was on continuous feeding via g-tube, consuming 460cc every 24 hours > of 26 calorie formula (total of 399 calories per day). A month later, he went up to 28 > calories/oz. formula for a total of 429 calories/day. His average weight gain at this time > was less than .5 oz/day. Hope this information helped. > > was my first-born too. I have since had 2 more wonderful children who also have > eating issues due to reflux and delayed emptying, but no RSS: - age 4 and - > age 9.5 mos. is now 47 lbs. at 11 years old. > > Kim C. > > > > > Hello to all, > > > > My daughter was born full term SGA 3#2oz 8-26-04. She was in the NICU for some time > and sent home on the NG feeding tube. She was not gaining weight and was not a big fan > of eating. Doctors switched her formula but didn't help. I could not deal with her not > eating and looking to be in pain. Nothing worked so I begged for a referral to Children's > Memorial Hospital. Sure enough the day before Thanksgiving she had surgery for > malrotation of the intestines. The surgeons felt that this very well could be why she did > not want to eat and did not digest her food, therefore always feeling full. While we were > there the Genesists seen her and said they think she has RSS. > > > > This weight thing is killing me. She is now 3 months old and weighing 5# 2oz. Can > anyone tell me how often they had to feed. Right now she is on 45 cc of 27 cal formula > every 3 hrs. Most of the time we don't have to use the NG tube but feeding still seems like > a battle. Also can anyone tell me approximately how much weight is usually gained? > (Children w/o RSS usually gain an ounce a day) > > > > This is our first born and we are having a real difficult time dealing with this. > > > > > > Quote Link to comment Share on other sites More sharing options...
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