Guest guest Posted October 6, 2002 Report Share Posted October 6, 2002 This is the first I've heard of this with a cf patient, but my mother had it for many years as an adult. She now has no colon, it got so bad. That's an extreme case, though. As to the esophageal sphincter, that's the " acid reflux " often mentioned in the list. Seems to be very common in cf patients. Dori Ownbey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Hello , There are some silimilarities in our children. It tooks us several months to find out what was going on with our 4 year old before we were sent to a Specialist. For awhile it was an allergy to Milk and Soy. We bought a diet book on MISI.... Milk Interolant, Soy Interolant. Ella loved milk. They put us on rice milk. Still her symptoms wouldn't go away. We learned a lot about reading labels and that so many foods have soy in them. It seem like we couldnt get any progress. Bloody stools persisted and grew more frequent. However, we noticed the day she had primarily bananas and bacon she actually had the most formed stool she'd ever had. She's been on iron supplements for months now and still very anemic--they weren't working. After our referral to a Ped GI specialist, Ella was diagnosed with UC on Oct 16, 2005. Biopsies came back indicating granuloma formation so they put her in the Crohns camp a few weeks later. Her ulcers were in her Colon however. The GI Dr. prescribed Prednisolone for her acute symptoms right away. We learned about the SCD also on that same day coincidently enough thru a Symposium by the CCFA. A dietician spoke of the success stories of two kids on a Stanford Study. Our GI is indifferent to it and says the " safe " things. He's not paid to be a Dietician. We started the diet and drugs together and found she could tolerate many foods on the diet--even fresh fruit and cooked veggies. Her appetite (due to the prednisolone) was huge and she'd eat anything really within SCD and do well. A month later we weaned off the prednisolone and a couple weeks later she started showing reactions to foods. Her stools where now 1/2 formed instead of fully formed. Still she was going once or twice a day. We elminated all dairy and even the cooked veggies. Things firmed back up again. We are now on a very high protein low carb form of the diet without the yogurt. Ella eats eggs, hamburger, steak, chicken in cooked down tomato juice, bananas, bacon, and drinks water and diluted 1/4 grape juice with 3/4 water, She also gets a daily dose of a highly concentrated chicken broth/soup recipe from BTVC and the Freeda SCD Multi Vitamin. We have a few bumps in the road with our own mistakes in implementation and the common colds thru the winter. However, this diet has given Ella great advances in her health. She's gained 1.5 lbs in the last month. She's happy and having normal formed stools. Thanks to Elaine's SCD, Great support from folks here, and another acquaintance whose daughter went thru this before us. I am a firm believer and am so thankful that people spend their time answering my questions here and thru emails and phone calls. Ella has a ways to go to broaden her diet. We are only 3.5 months into this. I have read Life without Bread by Dr. Lutz which is very helpful as well. He has charts on how his patients faired on a low carb diet that showed great progress in months 4,5,6. I believe hope this diet will help your child immensely like it has ours. Peace and Good health to you and your daughter, Brent Father of Ella, Crohns 4yrs old. SCD near 4 months. No Medications except Freeda SCD Multi Vitamin. > > SCD parents, > > We stopped giving our daughter Pedisure and started her on rice milk two > years ago. She has major gastro problems, and we are waiting for the > results of Dr Krigsman's biopsy's to put her on medicine for ulcerative > colitis. She's 4 1/2 and is no longer failure to thrive and medically > fragile, thanks to Dr Kartzinel getting her daily injections and monthly > IVIG with Dr Gupta. > > She is GF/CF/SF/DF I don't understand what I can give her to drink > except water and broth and juice (is Naked Mango juice ok?) She eats > ingredients (fresh fruits, veggies, meats, nuts and beans) not recipes, > but I know she'll miss French fries. I have a juicer, mixer and > Cuisinart. Do I need a yogurt maker? What type? What can I use for > the starter? > > The photo's of her upper and lower GI looked so bad, that I have to > learn from you people and try the SCD. She still wakes up in the middle > of the night crying for her bottle of milk. Any suggestions? I've > wanted to try this for over a year. I have Breaking the Vicious > Cycle... Will cold turkey work? I have less than a days worth of rice > milk, and I don't want to me like the moms who say they can't restrict > their child diet in order to help them heal. > > Sincerely, > > 4dayna@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Hello , There are some silimilarities in our children. It tooks us several months to find out what was going on with our 4 year old before we were sent to a Specialist. For awhile it was an allergy to Milk and Soy. We bought a diet book on MISI.... Milk Interolant, Soy Interolant. Ella loved milk. They put us on rice milk. Still her symptoms wouldn't go away. We learned a lot about reading labels and that so many foods have soy in them. It seem like we couldnt get any progress. Bloody stools persisted and grew more frequent. However, we noticed the day she had primarily bananas and bacon she actually had the most formed stool she'd ever had. She's been on iron supplements for months now and still very anemic--they weren't working. After our referral to a Ped GI specialist, Ella was diagnosed with UC on Oct 16, 2005. Biopsies came back indicating granuloma formation so they put her in the Crohns camp a few weeks later. Her ulcers were in her Colon however. The GI Dr. prescribed Prednisolone for her acute symptoms right away. We learned about the SCD also on that same day coincidently enough thru a Symposium by the CCFA. A dietician spoke of the success stories of two kids on a Stanford Study. Our GI is indifferent to it and says the " safe " things. He's not paid to be a Dietician. We started the diet and drugs together and found she could tolerate many foods on the diet--even fresh fruit and cooked veggies. Her appetite (due to the prednisolone) was huge and she'd eat anything really within SCD and do well. A month later we weaned off the prednisolone and a couple weeks later she started showing reactions to foods. Her stools where now 1/2 formed instead of fully formed. Still she was going once or twice a day. We elminated all dairy and even the cooked veggies. Things firmed back up again. We are now on a very high protein low carb form of the diet without the yogurt. Ella eats eggs, hamburger, steak, chicken in cooked down tomato juice, bananas, bacon, and drinks water and diluted 1/4 grape juice with 3/4 water, She also gets a daily dose of a highly concentrated chicken broth/soup recipe from BTVC and the Freeda SCD Multi Vitamin. We have a few bumps in the road with our own mistakes in implementation and the common colds thru the winter. However, this diet has given Ella great advances in her health. She's gained 1.5 lbs in the last month. She's happy and having normal formed stools. Thanks to Elaine's SCD, Great support from folks here, and another acquaintance whose daughter went thru this before us. I am a firm believer and am so thankful that people spend their time answering my questions here and thru emails and phone calls. Ella has a ways to go to broaden her diet. We are only 3.5 months into this. I have read Life without Bread by Dr. Lutz which is very helpful as well. He has charts on how his patients faired on a low carb diet that showed great progress in months 4,5,6. I believe hope this diet will help your child immensely like it has ours. Peace and Good health to you and your daughter, Brent Father of Ella, Crohns 4yrs old. SCD near 4 months. No Medications except Freeda SCD Multi Vitamin. > > SCD parents, > > We stopped giving our daughter Pedisure and started her on rice milk two > years ago. She has major gastro problems, and we are waiting for the > results of Dr Krigsman's biopsy's to put her on medicine for ulcerative > colitis. She's 4 1/2 and is no longer failure to thrive and medically > fragile, thanks to Dr Kartzinel getting her daily injections and monthly > IVIG with Dr Gupta. > > She is GF/CF/SF/DF I don't understand what I can give her to drink > except water and broth and juice (is Naked Mango juice ok?) She eats > ingredients (fresh fruits, veggies, meats, nuts and beans) not recipes, > but I know she'll miss French fries. I have a juicer, mixer and > Cuisinart. Do I need a yogurt maker? What type? What can I use for > the starter? > > The photo's of her upper and lower GI looked so bad, that I have to > learn from you people and try the SCD. She still wakes up in the middle > of the night crying for her bottle of milk. Any suggestions? I've > wanted to try this for over a year. I have Breaking the Vicious > Cycle... Will cold turkey work? I have less than a days worth of rice > milk, and I don't want to me like the moms who say they can't restrict > their child diet in order to help them heal. > > Sincerely, > > 4dayna@... > Quote Link to comment Share on other sites More sharing options...
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