Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Penny-- You are right that Pediasure is LOADED with sugar. Another thing you might try as you bide time to start the diet is Compleat Pediatric (by Novartis), which is a blenderized food formula of beef and veggies in an apple juice base. It's not low-carb by any standard, but some dieticians are adamant that it is a much healthier option than Pediasure. I would agree wholeheartedly--AND it gets completely away from dairy, which could be a possible trigger? Our Rett darlings are certainly known as a group to have dairy sensitivities... Here are some stats: RCF straight-up is a 1.8:1 ratio. 1000cc of it would give her 808Kcal and ~0g carbs; it is basically a protein/fat combo. It is concentrated and needs to be watered down as per dietician's directions. As keto ratios go, the straight RCF ratio of 1.8:1 is very gentle, although it's a big change to a little system used to Pediasure. Also, you really don't want a child having NO carbs without medical supervision, because the body needs a minimum amount to function. It might not be enough to get is into ketosis (or, then again, it might over time. maintains strong ketosis at 2:1, but then she started at 4:1 and worked down). Families who use RCF add in other ingredients to bring the ratio to the prescribed level. Fat is added, often as MicroLipid (handy because it stays suspended rather than floating to the top, which is important in a night drip). Carbs are either apple juice or Polycose powder (we chose apple juice because can drink it at mealtime by mouth, and it's easier to measure and mix in than Polycose, which we actually did use as a calorie booster pre-diet). Someone mentioned that you need a prescription for RCF--that is true. I know you are eager to get started. Your frustration level is extreme, I know. There are families who have managed the diet without much support. But I'm grateful we've had good medical support, as we have had some big bumps along the way that would otherwise have been pretty terrifying. I would hesitate to recommend just jumping in, especially since is has such a challenging seizure history. If things got out of whack with the diet, then you would really be in a major pickle. It sounds like your local ped is willing to support you, which is really important. Is there any way you could contact or travel to a keto center and get started under good supervision, and then your ped would have a strong foundation to work from? Man, oh man, I do wish your hospital team could get their act together! Wishing you the (speedy) best, Rose-Marie, mom to , age 7 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 hi thanks for the help we are still working it all out in the meantime alexis is one drop seizure after the other which is enough in itself to send me over the edge,, i just want her to be ok. anyway the hospital is still working on it but should only need another week at the most to get the ball rolling,,, biggest problem i have now is i still wanted to be able to give alexis at least one drink per day to keep her swallowing ,,, but the thick it powder we use is loaded to the hilt with carbs and i cant find another thickner...... 7gms per two tbls.....it takes 3 tbls to thicken 8 ounces and her med trileptol is going to be all the carbs she is allowed ughghgh penny PENNY S. HORSFALL is -Maries.... NANA MECP2 positive,3/02 Rett Syndrome 966_967 ins A 994_996 del ins T 1015_1099 del is-Marie FOUR! 7/08/99 Maine clubfred12@... _________________________________________________________________ Find high-speed ‘net deals — comparison-shop your local providers here. https://broadband.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 hi thanks for the help we are still working it all out in the meantime alexis is one drop seizure after the other which is enough in itself to send me over the edge,, i just want her to be ok. anyway the hospital is still working on it but should only need another week at the most to get the ball rolling,,, biggest problem i have now is i still wanted to be able to give alexis at least one drink per day to keep her swallowing ,,, but the thick it powder we use is loaded to the hilt with carbs and i cant find another thickner...... 7gms per two tbls.....it takes 3 tbls to thicken 8 ounces and her med trileptol is going to be all the carbs she is allowed ughghgh penny PENNY S. HORSFALL is -Maries.... NANA MECP2 positive,3/02 Rett Syndrome 966_967 ins A 994_996 del ins T 1015_1099 del is-Marie FOUR! 7/08/99 Maine clubfred12@... _________________________________________________________________ Find high-speed ‘net deals — comparison-shop your local providers here. https://broadband.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 hi thanks for the help we are still working it all out in the meantime alexis is one drop seizure after the other which is enough in itself to send me over the edge,, i just want her to be ok. anyway the hospital is still working on it but should only need another week at the most to get the ball rolling,,, biggest problem i have now is i still wanted to be able to give alexis at least one drink per day to keep her swallowing ,,, but the thick it powder we use is loaded to the hilt with carbs and i cant find another thickner...... 7gms per two tbls.....it takes 3 tbls to thicken 8 ounces and her med trileptol is going to be all the carbs she is allowed ughghgh penny PENNY S. HORSFALL is -Maries.... NANA MECP2 positive,3/02 Rett Syndrome 966_967 ins A 994_996 del ins T 1015_1099 del is-Marie FOUR! 7/08/99 Maine clubfred12@... _________________________________________________________________ Find high-speed ‘net deals — comparison-shop your local providers here. https://broadband.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 I have no idea whether this would work and haven't tried it myself. I use psyllium husks for fibre to fight constipation. I don't calculate it into the diet because I believe that it is 100% fibre. I know that it absorbs a lot of water. I get it in large bags at the health food store for $10. Bill penny horsfall wrote: > hi thanks for the help we are still working it all out in the meantime > alexis is one drop seizure after the other which is enough in itself to send > me over the edge,, i just want her to be ok. > > > anyway the hospital is still working on it but should only need another week > at the most to get the ball rolling,,, > > biggest problem i have now is i still wanted to be able to give alexis at > least one drink per day to keep her swallowing ,,, but the thick it powder > we use is loaded to the hilt with carbs and i cant find another > thickner...... 7gms per two tbls.....it takes 3 tbls to thicken 8 ounces > > and her med trileptol is going to be all the carbs she is allowed > > > ughghgh > penny > > > PENNY S. HORSFALL > is -Maries.... NANA > MECP2 positive,3/02 Rett Syndrome > 966_967 ins A > 994_996 del ins T > 1015_1099 del > is-Marie FOUR! 7/08/99 Maine > clubfred12@... > > _________________________________________________________________ > Find high-speed ‘net deals — comparison-shop your local providers here. > https://broadband.msn.com > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 I have no idea whether this would work and haven't tried it myself. I use psyllium husks for fibre to fight constipation. I don't calculate it into the diet because I believe that it is 100% fibre. I know that it absorbs a lot of water. I get it in large bags at the health food store for $10. Bill penny horsfall wrote: > hi thanks for the help we are still working it all out in the meantime > alexis is one drop seizure after the other which is enough in itself to send > me over the edge,, i just want her to be ok. > > > anyway the hospital is still working on it but should only need another week > at the most to get the ball rolling,,, > > biggest problem i have now is i still wanted to be able to give alexis at > least one drink per day to keep her swallowing ,,, but the thick it powder > we use is loaded to the hilt with carbs and i cant find another > thickner...... 7gms per two tbls.....it takes 3 tbls to thicken 8 ounces > > and her med trileptol is going to be all the carbs she is allowed > > > ughghgh > penny > > > PENNY S. HORSFALL > is -Maries.... NANA > MECP2 positive,3/02 Rett Syndrome > 966_967 ins A > 994_996 del ins T > 1015_1099 del > is-Marie FOUR! 7/08/99 Maine > clubfred12@... > > _________________________________________________________________ > Find high-speed ‘net deals — comparison-shop your local providers here. > https://broadband.msn.com > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 I have no idea whether this would work and haven't tried it myself. I use psyllium husks for fibre to fight constipation. I don't calculate it into the diet because I believe that it is 100% fibre. I know that it absorbs a lot of water. I get it in large bags at the health food store for $10. Bill penny horsfall wrote: > hi thanks for the help we are still working it all out in the meantime > alexis is one drop seizure after the other which is enough in itself to send > me over the edge,, i just want her to be ok. > > > anyway the hospital is still working on it but should only need another week > at the most to get the ball rolling,,, > > biggest problem i have now is i still wanted to be able to give alexis at > least one drink per day to keep her swallowing ,,, but the thick it powder > we use is loaded to the hilt with carbs and i cant find another > thickner...... 7gms per two tbls.....it takes 3 tbls to thicken 8 ounces > > and her med trileptol is going to be all the carbs she is allowed > > > ughghgh > penny > > > PENNY S. HORSFALL > is -Maries.... NANA > MECP2 positive,3/02 Rett Syndrome > 966_967 ins A > 994_996 del ins T > 1015_1099 del > is-Marie FOUR! 7/08/99 Maine > clubfred12@... > > _________________________________________________________________ > Find high-speed ‘net deals — comparison-shop your local providers here. > https://broadband.msn.com > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
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