Getting desperate

[Guest guest]

I am the mother of a 15 year old girl with CD. She was dx'd UC 6/06, remission with azathioprine & sulfasalazine until 8/07. Since then it's been a nightmare. She was hospitalized for 2 mo, dx changed to CD, not responsive to prednisone & regular meds, rx asacol, iron, mesalamine enemas, finally put on Remicade 10/07. Seemed to work for about a month, but other complications have caused repeated setbacks - c-dif 12/07, kidney stones 1/08 , flu 2/08 requiring hospitalization. We started SCD 2/16/08. Her sed rate dropped from 91 to 58 in a week. We were so encouraged. Last month I went on a trip with my son. While I was gone, apparently she ate what she was not supposed to while her father was out, got really sick. But worse was her hematocrit/hemoglobin dropped so badly

the dr had her given 2 units of blood. She felt better for a few days, but the day after I returned from the trip she went back into the hospital 3/28/08, had a PICC line for total bowel rest for a week, Remicade changed to Humira, seemed to be doing okay and sent home 4/7. We have resumed SCD. She was doing okay so we tried the banana cake with almond flour - too much too soon, I know. She loved it, but 2 days later she started bleeding, watery D. Her diet for the last 3 days has been baked chicken, well cooked ground beef, homemade chicken/veg soup broth, diluted fruit juice, an occasional scrambled egg, havarti cheese, and water. The yogurt will be ready today- we've had a hard time getting that started.We can't find the DCCC anywhere in our area - just outside of Sacramento CA. We had previously gotten a brick of "Farmer's Cheese" from Whole Foods here, but I was told that's not legal. We went back for the DCCC in the 8 oz tub

but they are no longer carrying it & won't order it.She is now taking asacol, prednisone (tapering), iron, zantac, Calcium with Vitamin D, acidophilus probiotic - 4.8 billion twice a day (dr wanted her on VSL#3 but due to the bifi bacteria we haven't given that to her since Feb) and now hydrocortisone enemas twice a day. Nothing seems to be helping. I am at such a loss, we are fighting so hard to keep her out of the operating room. My brain and prayers are exhausted.Does anybody have any other suggestions or advice? Thanks.LaRae B.