Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 Susiecue, Gosh, with all of us having female problems and our daughters too, I really wonder if there is a connection. Guess we will never know, or at least not for awhile. I told the 3 drs working with the Foundation the we would all be happy to take surveys or answer any questions that might be of any help in their research. I might just bring this up to them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 My 8 year old daughter has either Crohn's or ulcerative colitis. (all her damage is in her colon) She has had a horrible year with 9 hospital stays between sept., and Jan. for weeks each time. She went down to 38 pounds from malnutrition and dehydration. She has been on every med available for these diseases and not one has helped. In Jan. she was placed on tube feedings which helped her gain 20 pounds in 2 months. Now that she is eating food during the day again I have put her on the SCD. It's been 2 weeks, but she needs to stay on the tube feedings which include things in it that go against this diet. (soy, fos, corn syrup solids) Does anyone have any advice or experience that they could offer me? I feel like I am the only Mom in this position. I want to do what's best for her and when she was on the feeding alone she was the healthiest she had been in years. I don't think her body could afford to end the tube feedings completely. DEBBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Hi Debbie, I can't say I have been in the same position you're in now. But I have a friend who's daughter has a G-tube, and in fact, takes all of her nutrition via the tube. My friend has done a completely home-cooked, pureed food diet for her daughter, and given it through the tube. She does not give her any commercially prepared formula now. I know it can be done... it's a matter of getting the consistency right and, of course, you have other concerns such as calories and ratio of carb, fat and protein. I'm sorry to say that with the current formula she's getting, which has all the non-compliant ingredients, she won't be getting the benefits of healing that SCD can give. So, she's not truly " on SCD " , as long as those things are present. I wish your daughter's doctors could help you figure out a way to still give her all the extra nutrients she needs without the illegal components. Seems like a nice goat yogurt smoothie with pureed fruit (Maybe with additional fat? Avacado, or??) would give great nutrition and a nice calorie boost.... and could be thinned and strained to go down the tube properly. Not sure that helped at all... Patti, mom to Katera, former SCD kid for 18 months... two years off... and now SCD again since 5/27. My daughter My 8 year old daughter has either Crohn's or ulcerative colitis. (all her damage is in her colon) She has had a horrible year with 9 hospital stays between sept., and Jan. for weeks each time. She went down to 38 pounds from malnutrition and dehydration. She has been on every med available for these diseases and not one has helped. In Jan. she was placed on tube feedings which helped her gain 20 pounds in 2 months. Now that she is eating food during the day again I have put her on the SCD. It's been 2 weeks, but she needs to stay on the tube feedings which include things in it that go against this diet. (soy, fos, corn syrup solids) Does anyone have any advice or experience that they could offer me? I feel like I am the only Mom in this position. I want to do what's best for her and when she was on the feeding alone she was the healthiest she had been in years. I don't think her body could afford to end the tube feedings completely. DEBBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 You go girl. my daughter I have a meeting with the school superintendent, not sure I spelled that right. She is a very nice lady, used to be a Principal. So keep my in your thoughts and prayers that this meeting will go good. She is trying to keep us from appealing, so is offering up other options. I've thought a lot about what I should of said during the school year, but didn't, so now I will. Thank you all for your words of encouragement, and your prayers, I appreciate them so much. Marla Quote Link to comment Share on other sites More sharing options...
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