Ideas for IBD flare (from enzymes?)

[Guest guest]

My dd's (11 undifferentiated IBD pancolitis) frequency has gradually increased over the past several months to where she is now back to 8-10x/day and up once/twice per night. We are still eating only stage 1/2 foods after 20 mos. SCD. We had tried adding in prozymes (made it up to half the dose) in hopes of increasing her tolerance this year (she still often had undigested vegetables in very loose stool), pulled them for awhile when she seemed to start doing worse and we weren't sure if they were part of the problem. DD thought her stools were more formed with them, so we gradually reintroduced them. We made it up to the full dose this time but she began having very severe sharp upper GI pain that nearly incapacitated her for a couple hours at a time. At first it was sporadic (once/week), then the pain increased to most

days. We discontinued the enzymes 3 wks ago and she has not had any of the sharp pain since then, however stool frequency increased from 5-6 to the 8-10. Has anyone had enzymes cause a flare? Any tips besides time for healing?We pulled out the pecan butter pancakes/muffins and avocado for the past 10 days with no change so added them back in yesterday since her diet is so limited already and weight and energy were drooping. We had also pulled out carrots at one point for over a month and green beans another time since they tend to come through undigested. Foods (all homemade) she is eating: Brk--pecan butter or egg/banana pancakes, yogurt with peaches ahd honey. Lunch and Supper--chicken with olive oil and sea salt, grilled beef patty or roast beef, occasionally fish, small amount of applesauce, well-cooked fc green beans, carrots (still 4 hrs.), or zucchini. Snack/treats if desired: smoothie

(yogurt, tropicana OJ or Knudsen's Just Pomegranate, ripe banana, well cooked pineapple or peaches, avocado), souffle bread (about 1/wk. with tomato sauce and goat cheddar for a "pizza"), honey toffee, dripped yogurt cheesecake. We had occasionally used almond butter/flour as well but not in past several weeks. It's especially difficult now because she has eaten the same few things for so long and it's summer with all the fresh produce in our garden and the stores looking so good to her.Going back to intro as written isn't much of an option due to lack of carbs since she does not tolerate the cider or grape juice and with the vegetables not digesting well anyway I can't overload her on them. She also won't eat eggs (unless in baked goods) and won't eat meat for breakfast. She hates soups/broths/stews in summer, but likes them in winter.She is hyper sensitive to meds/supplements in terms of side

effects. Currently she is on 75 mg azathioprine which at higher doses never reached a therapeutic level and caused many side effects. She had previously been on high doses of prednisone twice, asacol (incr. D), and 6 mp (same situation as azathioprine.) We had the azathioprine compounded last year for several mos.--this was the best she had done (3-4 x/day, sometimes formed into narrow tubes), but not a huge improvement. However due to insurance changes this isn't an option anymore (big difference between $3 copay generic and $175 uncovered compound/mo.) I don't like giving it to her since it has both lactose and cornstarch and I'm not sure it has done any good. I asked her GI about LDN and he told me (not sure if it was sincere or sarcastic) that we could go to Pennsylvania if we wanted to try getting in the children's Crohns study (not an option--she doesn't have a firm crohns diagnosis, and does not tolerate

hospitals/tests emotionally at all, not to mention finances involved.) This seemed like his way of saying he wouldn't prescribe LDN and he doesn't want her off azathioprine incase she has to start remicade. His recommendation if we do anything else has always been to move to the biologics next, but I don't like the risk profile at all and DD is terrified of needles. Anyone know of a pediatric GI in WI who is open to LDN?We have also at various times tried BodyTalk, acupuncture (couldn't tolerate needles so learned tui na and acupressure), and are currently seeing a cranio-sacral therapist who carries both a DC and MD (but she won't prescribe western meds.) and is working on her ND. We have tried some homeopathics (1 dose of penicillium and 6 wks later 1 dose of streptocinum) since all of her health issues started after strep throat and back to back doses of amoxicillin. She thinks some of the current flare may be

part of the healing process from the homeopathics, but I'm still uncertain about them. Any thoughts experience on this one?Sorry for the ramble, just looking for some help and hope right now. DawnMom to Hannah 11dx 5-06 severe undifferentiated IBD (doc now leaning towards crohns due to mouth sores.) SCD 11-07