Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Dianne, I'm not sure what to suggest for Em. I do know this. My Tanis (2 yr old CHARGEr) is 37 " tall and only weighs 26 lbs. He never even got on his weight curve until he was 2 years old and that was at 24 lbs. Now at 33 months, he is in the 3-5 percentile. He is oral on all his foods and meds, with no g-tube. He eats as many as 5-6 times a day and nothing has helped his weight gain. I hope Em can improve to what the doctor's want not only for her sake, but yours also. Carolyn Mother of Tanis 2 CHARGE and Dennis 2 1/2 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Diane My son had difficulty gaining and maintaining weight. I know how frustrating it is .. We consulted a nutritionist who was able to give me the scoop to water ratio for up to 30 cal per oz formula. My son was always on Portagen (at the time it was very expensive) it had the predigested fat so my son could process it better. The nutritionist said she had other ideas if the 30 cal did not work. Lucky for us it did...You might be able to find a pediatric nutritionist at the hospital your use..We were lucky she was part of the team in the NICU and we were able to keep in touch with her for as long as we needed. I fed my son during the day...he was too active to be fed overnight...no matter what we tried....So I set a timer and bolus fed his 10 cc every 15 minutes for an hour, waited an hour and started the feeding hour again...over maybe 3 or 4 weeks he became comfortable so I was able to increase to 20 cc 4 times an hour.. slowly increasing ..all the way up to 60 cc every 15 minutes for an hour... This process too a long time but my son gained enough weight to keep his doctors happy... He is almost 7 years old, 45 inches tall and 39 pounds....had his g-tube removed last year and loves to eat... Good luck Ellen ....mom to almost 7 (CHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Ellen wrote: He is almost 7 years old, 45 inches tall and 39 pounds....had his g-tube removed last year and loves to eat... Aubrie is also nearly 7 (Nov 29). She weighs about 38 lbs and is about 42.5 inches tall. She's getting taller but hasn't gained weight in over a year it seems like. She is at about the 3rd percentile so the ped is not concerned about her growth. Aubrie has been oral since about age 1.5 yrs. She eats everything and in reasonably good amts. She is a better eater than many of her peers who are picky and eat less. It just seems like CHARGE kids don't use their nutrition efficiently or something. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 I don't think tim an oral eater--has ever been on the curve--he's had his own curve and as long as he maintained that curve they were ok with it. maria mom to timmy 47 1/2 " and 43 pds. 9 on 8/15, keegan 6, liam 3 wife to pat Re: Ideas for feeding? > Dianne, > > I'm not sure what to suggest for Em. I do know this. My Tanis (2 yr old > CHARGEr) is 37 " tall and only weighs 26 lbs. He never even got on his weight > curve until he was 2 years old and that was at 24 lbs. Now at 33 months, he is > in the 3-5 percentile. He is oral on all his foods and meds, with no g-tube. > He eats as many as 5-6 times a day and nothing has helped his weight gain. > > I hope Em can improve to what the doctor's want not only for her sake, but > yours also. > > Carolyn > Mother of Tanis 2 CHARGE and Dennis 2 1/2 months and wife to Chris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 I don't think tim an oral eater--has ever been on the curve--he's had his own curve and as long as he maintained that curve they were ok with it. maria mom to timmy 47 1/2 " and 43 pds. 9 on 8/15, keegan 6, liam 3 wife to pat Re: Ideas for feeding? > Dianne, > > I'm not sure what to suggest for Em. I do know this. My Tanis (2 yr old > CHARGEr) is 37 " tall and only weighs 26 lbs. He never even got on his weight > curve until he was 2 years old and that was at 24 lbs. Now at 33 months, he is > in the 3-5 percentile. He is oral on all his foods and meds, with no g-tube. > He eats as many as 5-6 times a day and nothing has helped his weight gain. > > I hope Em can improve to what the doctor's want not only for her sake, but > yours also. > > Carolyn > Mother of Tanis 2 CHARGE and Dennis 2 1/2 months and wife to Chris > > > Quote Link to comment Share on other sites More sharing options...
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