Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 , Couldn't you just use a formula, and mix it with less water to boost the calories? We used to do that for Kennedy once upon a time. Right now she is Vivonex Pediatric, mixed regular strength which has 0.8 cal per ml. We used to use Carnation Good Start when she was quite young mixed with my expressed breast milk to boost the cals. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 High-Calorie Formula I am curious, does anyone know of a 30 cal. formula ordrink that does not contain oil? My daughter needs ahigh calorie formula, but she hasn't been able totolerate the regular formula with oil and sugar addedor the pedia-sure drink. If you know any other recipesfor making 30 cal. formula or know of something thatis already made but is easy to tolerate let me know.Thanks! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 POLYCOSE !!!!!!!!!!!!!!!! This stuff is great and it's recommended by the nutritionist at our hospital. It definitely puts on the pounds and doesn't have the nasty side effects of oil. If you need any feel free to ask, as I have a TON of it. My boys are both " FAT " now and I definitely don't need to use any of it anymore. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Hi , I know it's been a long time huh? I have been so busy with the boys (but they have been relatively healthy) and my other kids and getting ready for our move to Virginia, that I haven't really had time to write (and barely get time to read some of the letters on the list). Zak is getting ready for his heart surgery on Feb. 6 and then we move. The other 2 major surgeries he will need are going to be done in Virginia (but I have a great hospital there so they are both going to be in good hands). Hope everyone is doing good. Both my boys are getting so fatttttt, Tryny now weighs 58 and Zak weighs 26. They look so cute with all their fat rolls. Keep in touch and I will try to write back, Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Debra, It's good to hear from you, how are the boys doing? We also used polycose for Kennedy way back when I just forgot about it! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 Re: High-Calorie Formula POLYCOSE !!!!!!!!!!!!!!!!This stuff is great and it's recommended by the nutritionist at our hospital. It definitely puts on the pounds and doesn't have the nasty side effects of oil. If you need any feel free to ask, as I have a TON of it. My boys are both "FAT" now and I definitely don't need to use any of it anymore. Debra"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 It's funny that no doctors have ever told me about this stuff for a year and a half!!! Especially with all her problems with weight gain. Thanks for the offer but I just ordered some from the pharmacy plus it will cost a lot to ship them. One question though, will insurance pay for these??? I don't have medicaid or any of those just private insurance. Thanks-- __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 We used to use concentrated Similac mixed with breast milk. We used one oz of concentrate to 3 oz of milk to make 30 calories. G, Mom to , almost 5, wow! ----Original Message Follows---- From: Gerholt Reply-To: CHARGEegroups To: chargeegroups Subject: High-Calorie Formula Date: Fri, 19 Jan 2001 19:07:44 -0800 (PST) I am curious, does anyone know of a 30 cal. formula or drink that does not contain oil? My daughter needs a high calorie formula, but she hasn't been able to tolerate the regular formula with oil and sugar added or the pedia-sure drink. If you know any other recipes for making 30 cal. formula or know of something that is already made but is easy to tolerate let me know. Thanks! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Debra, Well I will be thinking of sweet Zaky on the 6th, and I hope you are still planning on attending the conference, I want to see my little man Tryny again! Give them a big kiss from Kennedy and I hope all goes well with the surgery and also with the move (that's a big job with the size of your family!!!!!) Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 Re: High-Calorie Formula Hi ,I know it's been a long time huh? I have been so busy with the boys (but they have been relatively healthy) and my other kids and getting ready for our move to Virginia, that I haven't really had time to write (and barely get time to read some of the letters on the list). Zak is getting ready for his heart surgery on Feb. 6 and then we move. The other 2 major surgeries he will need are going to be done in Virginia (but I have a great hospital there so they are both going to be in good hands).Hope everyone is doing good. Both my boys are getting so fatttttt, Tryny now weighs 58 and Zak weighs 26. They look so cute with all their fat rolls.Keep in touch and I will try to write back,Debra"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 , You got that right, just figuring out who is driving which vehicle is a chore (we have the U-Haul, my van - and I can't drive - my husbands pickup and my daughters car). And we have to stop 1/2 way through because of Zak's oxygen, so it will take us 2 days instead of the usual 1. And getting all the medical equipment and supplies in the van takes up all the room for feet. But we have moved so many times that I'll get it accomplished in a heart beat. But I will keep you all informed as to how it goes, and when we get to actually leave. As for the conference, we are going to try really hard to make it, I want to see everyone again. I doubt I can bring Zak though as he requires too much constant medical attention and I would never be able to see any speakers. But I will definitely bring Tryny and probably my oldest daughter Stephani. But I have to see how things go between now and then. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 Debra, I'll be thinking of Zacky and hope all goes well. Take care. Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Debra, Best of luck with the move, you're a brave woman!!! Make sure if you don't bring Zak to the conference you bring LOTS of pics, I can imagine he's changed so much since those first pics we saw of him! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 Re: High-Calorie Formula ,You got that right, just figuring out who is driving which vehicle is a chore (we have the U-Haul, my van - and I can't drive - my husbands pickup and my daughters car). And we have to stop 1/2 way through because of Zak's oxygen, so it will take us 2 days instead of the usual 1. And getting all the medical equipment and supplies in the van takes up all the room for feet. But we have moved so many times that I'll get it accomplished in a heart beat. But I will keep you all informed as to how it goes, and when we get to actually leave. As for the conference, we are going to try really hard to make it, I want to see everyone again. I doubt I can bring Zak though as he requires too much constant medical attention and I would never be able to see any speakers. But I will definitely bring Tryny and probably my oldest daughter Stephani. But I have to see how things go between now and then.Debra"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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