Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Helen, I’d be so very cautious. I don’t intend to ever come off of the diet. I’d be too afraid of losing all the good that the diet did to me and getting sick all over again…then, having to start the diet over from scratch. And it would be even harder the second time around to get rid of the bad bugs. Having said that, I heard of some people on the diet that have tried incorporating one non-SCD food at a time into their diet, slowly, just like you would a new food. I would suggest doing it that way instead. Then, if she gets a flare, you know to not give her that food. Hope this helps, SCD 21 mths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Ellen, I have a 51 yr old on scd and he has decided that even though his crohns is under control, and he is med free, that non scd foods are only ever a sometimes food, ie. once a month type. He will not break the rules and when we cook rice for example, it is washed 3-4 times before cooking and again after cooking to remove as much starch as possible, and then he eats no more than half to 3/4 cup. He feels it is not worth breaking for anything. Maybe you have to explain the consequences to your daughter and let her have a mini flare for her to decide the same thing. As a parent we want to prevent pain as much as possible but sometimes they need to learn the hard way. You might be surprised at her choices when she is given the option but you must impress upon her that going off the diet could land her in hospital with colonoscopies, surgery and years of steroid medication, she might just decide its not worth the risk. Good luck,\ jena 12 y/o dd, who has been scd since being dx'ed w. a whopper of a case of Crohn's at age 8.5, asked me about coming off SCD. She has done so well on SCD--although it took a very long time to get that initial flare under control, she has not had a major flare since (a few minor ones, able to be dealt w. w/o meds, just going back to the intro diet and laying low for a few days), and has been off all meds for 2.5 years. WOW. I really can't believe that.....(that she's been SCD for so long, and that we were able to get her well enough to ever go off meds [which was not our aim when we started, we just wanted her to get healthy any way possible, and have a chance at gaining height and weight (both of which, thank G-d, she has done beautifully)] I have a feeling that most people who could answer this question are like me and don't come to this group so much any more, but, if anyone has any info, I would really appreciate it. We have her labs done, specifically to look at ESR and CRP every few months. Her GI (who is 100% SCD supportive) is kind of in a holding pattern w. us since last year. I took her off meds w/o his consent b/c he said we had to do a colonoscopy to verify that there was no disease activity. DD HATES the prep and the procedure, and they also use general anesthesia (maybe not at her current age?) so I would rather avoid that as well.....I feel that, as long as her labs are okay and she is symptom-free, it is asking for troubles to do the prep (which, itself, can cause a flare), and it's hard for me to see dd go through something which is really psychologically traumatic for her. We saw GI a few months ago, and he said the same thing and we left it that we would come back if/when we were ready for dd to have the colonscopy..... So I don't feel like we have any real guidance here. We could just take her off and see what happens, but that seems a bit scary. We tried adding in organic brown rice last spring, and, after a few weeks--mini flare. Every few months for the past year, she's had one meal " off " and has never had a problem (note that I am not suggesting this for others, and dd has been SCD for 3. 5 years). Thanks for any help.Ellen12 y/o dd scd since 5/06 for Crohn's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Ellen, As someone relatively new to SCD, I can't speak from experience, but it seems that people stay on SCD for life. Some do go off it on occasion, but even Elaine's daughter eats predominantly SCD. Your daughter is on the brink of adolescence which puts the body though many changes. It is common for children with chronic conditions, like diabetes, to have difficulties with their illness as the body deals with changing hormones. This would seem to me to be a time of caution. If she tolerates an occasional off SCD meal at this point- great. As a teenager she will want to go to sleepovers or go out with friends and it won't be as easy to control what she eats. Maybe you could strike a compromise. 100% SCD at home, an occasional treat for special occasions as tolerated. If it were my own daughter I would want her on SCD through adolescence at least until she has finished growing. Stocker, who posts here, did an experimental fast food meal after years of symptom- free on SCD. Maybe he will elaborate on his experience. PJ > > > > > > > 12 y/o dd, who has been scd since being dx'ed w. a whopper of a case of > > Crohn's at age 8.5, asked me about coming off SCD. She has done so well on > > SCD--although it took a very long time to get that initial flare under > > control, she has not had a major flare since (a few minor ones, able to be > > dealt w. w/o meds, just going back to the intro diet and laying low for a > > few days), and has been off all meds for 2.5 years. WOW. I really can't > > believe that.....(that she's been SCD for so long, and that we were able to > > get her well enough to ever go off meds [which was not our aim when we > > started, we just wanted her to get healthy any way possible, and have a > > chance at gaining height and weight (both of which, thank G-d, she has done > > beautifully)] > > > > I have a feeling that most people who could answer this question are like > > me and don't come to this group so much any more, but, if anyone has any > > info, I would really appreciate it. > > > > We have her labs done, specifically to look at ESR and CRP every few > > months. Her GI (who is 100% SCD supportive) is kind of in a holding pattern > > w. us since last year. I took her off meds w/o his consent b/c he said we > > had to do a colonoscopy to verify that there was no disease activity. DD > > HATES the prep and the procedure, and they also use general anesthesia > > (maybe not at her current age?) so I would rather avoid that as well.....I > > feel that, as long as her labs are okay and she is symptom-free, it is > > asking for troubles to do the prep (which, itself, can cause a flare), and > > it's hard for me to see dd go through something which is really > > psychologically traumatic for her. We saw GI a few months ago, and he said > > the same thing and we left it that we would come back if/when we were ready > > for dd to have the colonscopy..... > > > > So I don't feel like we have any real guidance here. We could just take her > > off and see what happens, but that seems a bit scary. We tried adding in > > organic brown rice last spring, and, after a few weeks--mini flare. Every > > few months for the past year, she's had one meal " off " and has never had a > > problem (note that I am not suggesting this for others, and dd has been SCD > > for 3. 5 years). > > > > Thanks for any help. > > > > Ellen > > 12 y/o dd scd since 5/06 for Crohn's > > > > > > > Quote Link to comment Share on other sites More sharing options...
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