cre, I'm sorry to hear your son has been dealing with C.Diff for so long. Have you tried other antibiotics, besides Vancomycin? My daughter had recurrent C.Diff and just recently managed to get rid of it. She had it twice after being diagnosed with Crohn's and both times, using antibiotics for another infection triggered it (sinus infection, throat infection). Both times we treated with Vancomycin and it went away.Meds are borderline, they keep him at bay most of the time (exterior, labs and colonoscopies say differently), I do not believe he has ever been in remission since diagnosed at 2 1/2 y/o. We can’t get rid of c.diff and been on vancomycin for years. If we can improve anything we will count it as a success. Thank you again!
Yikes Optimistic!! I had no idea your son had such a hard time with this at first. It's incredible that he has managed to stay with it through his teen years. I hope he'll try to stick with it in college...Having a young adult is hard!Compliance is the first hurdle. I do a lot of planning and he has to take that on as he ages. I’m sure there are hotels and restaurants with my picture as craziest visitor ever. Socially it is challenging bc some adults call attention (kids don’t seem to care) or they even challenge it which is last thing a kid wants.
Monitoring for growth and any signs of flare adds more complexity. The first few years he did quarterly FCP, labs and GI visits. He still has scopes and MRE every 12-18 months. For years a dietician tracked calories and made us keep weight and calorie logs. There were days I followed him around begging him to drink or use tube before all this became normal.
I don’t want to sound too negative. I’m well aware that Crohn’s is awful and many face difficult situations over and over. I really didn’t find anyone who religiously followed SCD under a drs guidance so didn’t know what to expect. I’m grateful, that’s for sure!
Thank you for the insight, I appreciate all we can get...good, bad, and ugly. Our doctor has been suggesting SCD for over a year and we have not really considered it too much until recently. Our main concern is not getting enough calories as he is having growth issues already, so we will monitor that. We are on board to try and and figure worst case scenario, we have to stop. I know it may not work but I am hopefully and have heard many success stories, including patients of our doctor. After years of getting injections he is beginning to have a hard time with them and this was our tipping point. I am just beginning to meal prepHi. My son has used SCD as part of his treatment for about 5 years.
He left hospital on EEN and steroids. 8 weeks later he was feeling pretty good and FCP improving but no approval yet for remicade. He tried to wean steroids and and would not do more EEN so we tried 50% SCD and 50% EN as sort of a stop gap / Hail Mary. He continued to improve so here we are with SCD and maybe 20% shakes.
I’m a science and data lover and that is one of my concerns about SCD. Even the dr who suggested it doesn’t know how it works and very rarely recommends it. Drs at 3 major centers in US and Canada have reviewed him or his case and the best guess is maybe the combo of SCD and some gut rest from shakes work together. Even the most skeptical recommends he continue.
Compliance is the first hurdle. I do a lot of planning and he has to take that on as he ages. I’m sure there are hotels and restaurants with my picture as craziest visitor ever. Socially it is challenging bc some adults call attention (kids don’t seem to care) or they even challenge it which is last thing a kid wants.
Monitoring for growth and any signs of flare adds more complexity. The first few years he did quarterly FCP, labs and GI visits. He still has scopes and MRE every 12-18 months. For years a dietician tracked calories and made us keep weight and calorie logs. There were days I followed him around begging him to drink or use tube before all this became normal.
I don’t want to sound too negative. I’m well aware that Crohn’s is awful and many face difficult situations over and over. I really didn’t find anyone who religiously followed SCD under a drs guidance so didn’t know what to expect. I’m grateful, that’s for sure!
I think there is some work in Israel on diet and EN combo. Of the places we’ve been Boston was least into this sort of treatment.
Oh, and there are no shakes that are qualify under SCD. None. One dr who is not a fan of diets likes to tell me the shakes are packed with illegal ingredients.
I’m sorry for that long road of C. Diff you had to go down but so happy she got rid of it Yay!cre, I'm sorry to hear your son has been dealing with C.Diff for so long. Have you tried other antibiotics, besides Vancomycin? My daughter had recurrent C.Diff and just recently managed to get rid of it. She had it twice after being diagnosed with Crohn's and both times, using antibiotics for another infection triggered it (sinus infection, throat infection). Both times we treated with Vancomycin and it went away.
But last November, she got it a 3rd time, following a skin infection and Keflex and that time we just could not get rid of it. Vancomycin did not work. We re-tested after she'd finished 2 weeks and she still had C.Diff. Then we tried Dificid. That worked - she had a negative C.Diff test. But then symptoms returned. Anyway, we did several more course of Dificid, including 2 month long one, with a taper. Every time we finished (and stopped) abx, C.Diff symptoms came back and so we were referred to Infectious Diseases for a fecal transplant consult.
We were told my daughter's use of antacids was putting her at risk for C.Diff relapses and until we lowered the doses, an FMT (Fecal Microbiota Transplant) would not work. We were able to reduce the dose of her PPI by half and stopped Pepcid (she's allowed to use Carafate and Maalox instead). Then did an FMT, via colonoscopy. At that point, she'd had C.Diff for pretty much 6 months straight.
The procedure was not fun (more prep than a typical scope) but it worked!! She's had 2 negative C.Diff tests since then! And her joints, which were flaring for 6 months, have started to calm down!
@Optimistic , do you know anything about a2 milk? I was wondering if it is SCD legal but cannot find anything about it and SCD?Hi. My son has used SCD as part of his treatment for about 5 years.
He left hospital on EEN and steroids. 8 weeks later he was feeling pretty good and FCP improving but no approval yet for remicade. He tried to wean steroids and and would not do more EEN so we tried 50% SCD and 50% EN as sort of a stop gap / Hail Mary. He continued to improve so here we are with SCD and maybe 20% shakes.
I’m a science and data lover and that is one of my concerns about SCD. Even the dr who suggested it doesn’t know how it works and very rarely recommends it. Drs at 3 major centers in US and Canada have reviewed him or his case and the best guess is maybe the combo of SCD and some gut rest from shakes work together. Even the most skeptical recommends he continue.
Compliance is the first hurdle. I do a lot of planning and he has to take that on as he ages. I’m sure there are hotels and restaurants with my picture as craziest visitor ever. Socially it is challenging bc some adults call attention (kids don’t seem to care) or they even challenge it which is last thing a kid wants.
Monitoring for growth and any signs of flare adds more complexity. The first few years he did quarterly FCP, labs and GI visits. He still has scopes and MRE every 12-18 months. For years a dietician tracked calories and made us keep weight and calorie logs. There were days I followed him around begging him to drink or use tube before all this became normal.
I don’t want to sound too negative. I’m well aware that Crohn’s is awful and many face difficult situations over and over. I really didn’t find anyone who religiously followed SCD under a drs guidance so didn’t know what to expect. I’m grateful, that’s for sure!
I think there is some work in Israel on diet and EN combo. Of the places we’ve been Boston was least into this sort of treatment.
Oh, and there are no shakes that are qualify under SCD. None. One dr who is not a fan of diets likes to tell me the shakes are packed with illegal ingredients.
Milk products are allowed only if lactose sugar has been removed - such as fermented (homemade) yogurt and aged cheeses.@Optimistic , do you know anything about a2 milk? I was wondering if it is SCD legal but cannot find anything about it and SCD?
We are successfully completing day 4 of SCD and I have been in the kitchen more than I ever have been in my life !
Hi, Im on here looking to see if anyone doing SCD for kids too. My daughter has Ulcerative colitis, we are doing it for 2 1/2 weeks now. weeks now, cannot believe it! It is hard work to start with but it's worth it. She loves the food, weight is probably steady, I'm happy to share? This is my first forum entry have you watched Elaine Gottschall on YouTube? I watched them, then bought her book-breaking the vicious cycle.Hi everyone! I’m not sure if there is already a thread for specific carbohydrate diet or not....is/has anyone tried it with your kiddos? We have been thinking about it for some time now and are finally going to give it a try, looking for any helpful tips and advice. Thanks in advance
Yay! I’m so glad it is going well. I also bought the book Breaking the Vicious Cycle and have listened to many positive podcast success stories on SCD. We did the diet for 2 weeks all while our guy wasn’t feeling 100 percent so we stopped. He has growth issues (unrelated to IBD) and began loosing weight with all that was going on when we started. We were having trouble finding a good milk option...what do you drink? Otherwise, I noticed a big difference in him not having near the amount of gas we were used to!! We keep going back and forth and starting again, I would love to hear some of your go to’s.Hi, Im on here looking to see if anyone doing SCD for kids too. My daughter has Ulcerative colitis, we are doing it for 2 1/2 weeks now. weeks now, cannot believe it! It is hard work to start with but it's worth it. She loves the food, weight is probably steady, I'm happy to share? This is my first forum entry have you watched Elaine Gottschall on YouTube? I watched them, then bought her book-breaking the vicious cycle.