Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Dianne: Just one more thought. Have a nutritionist look at the calorie and nutrient content of Boost (dietary supplement). started on it a few years ago and I wish we'd found it sooner. We went from nearly 2 quarts of 24 calorie milk daily (and overnight on pump) to 3 cans of Pediasure. Then started to eat orally. I think she just didn't have enough stomach capacity for anything else before then. Then she was having to intake 3 cans of Pediasure a day, and she didn't want to eat anything else by mouth. (And they were talking about possibly adding a fourth can!) We consulted a nutritionist and she suggested Boost because with 2 cans could get the same nutritional balance as she was with the 3 cans of Pediasure. When she wasn't so fluid filled, she started eating more by mouth. We ended up using Boost with protein because still doesn't eat enough of those types of foods. Doesn't sound like you're trying the oral route yet; but if you can get the same calories into on a lower fluid amount, it might be worth checking into. I don't know how early they will want to use something like Boost versus Pediasure. It could be that Boost is harder to break down than Pediasure. was 8 or 9 years old when we made this change. Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Thanks everyone Thanks everyone for your suggestions and advice.. I do realize the CHARGE kids have problems gaining. This doctor was her pediatrican from the naval hospital. She sees her genetist next month. She tolerates 90 to 100 cc's every 3 hours. I put her down between 11 and 12 and let her sleep till 6 am. She totally wakes up everytime i go for her button. She know's it is time to eat.I think he was concerned because this is the first time she has fallen off her weight curve. To be honest emily is very very active during the day. She rolls around , kicks, scoots and etc throughout the day. She is on pediasure and it does have more calories than her formula did. The pediasure is a whole lot thicker than her formula was. I think that's why she tolerates less. I think seeing a nutrionist is great idea. I'm sure her genetist will agree with that and they have everyone she needs at wolfsons and nemours. She looks really healthy and happy. She gets real fussy and hostile when i try to put more in her tube. She sorta knows when she is full, I don't know if that makes sense or not. But today I slowed her feed down and broke it up into 15 minutes apart. I have been able to get 110 in. They want 120 though. I can't see that happening for a while. All it will do is come out of her nose. Then she really gets hostile. Let me thank everyone again. I appreciate everyones help and advice. As always i wish everyone health and happiness... Take care Dianne and 14month CHARGER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Oh, ! I still find it hard to believe it will soon be 2 years since na left us! You don't know what it means to me that you still hang in here and offer your thoughts and wisdom. You and Debbie T. are much stronger than I think I could ever be. Bless you! Friends in CHARGE, Marilyn Ogan Mom of Ken (14 yrs., ADD) and (11 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: Thanks everyone Dianne, Not a problem, most dr's at wolfson's and Nemours are great. We live in ville. We had a daughter with charge(http://home.comcast.net/~briannacampanale). August 13th will be 2 yrs since she has been gone. We still touch base with some of her doctors. Campanale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Marilyn - From the keyboard of Rick Ogan: > Oh, ! > I still find it hard to believe it will soon be 2 years since na left > us! ... That was my thought as well! >...You don't know what it means to me that you still hang in here and > offer your thoughts and wisdom. You and Debbie T. are much stronger than I > think I could ever be. Bless you! Thanks for that. It brought tears to my eyes. But I don't feel that way at all. I'm very grateful that Sara didn't suffer but as I read posts from all of you, it makes me pause to consider how different our lives would be if she'd lived. We only experienced 13 days of that medical intesity that you've lived for so many years. I truly feel that all of the CHARGErs and their families are the truly strong ones. Hugs, Debbie -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Marilyn - From the keyboard of Rick Ogan: > Oh, ! > I still find it hard to believe it will soon be 2 years since na left > us! ... That was my thought as well! >...You don't know what it means to me that you still hang in here and > offer your thoughts and wisdom. You and Debbie T. are much stronger than I > think I could ever be. Bless you! Thanks for that. It brought tears to my eyes. But I don't feel that way at all. I'm very grateful that Sara didn't suffer but as I read posts from all of you, it makes me pause to consider how different our lives would be if she'd lived. We only experienced 13 days of that medical intesity that you've lived for so many years. I truly feel that all of the CHARGErs and their families are the truly strong ones. Hugs, Debbie -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
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