Hi everyone. Un-glad to be here (you know what I mean....)
dd1 was dx'ed at age 8.5 after 3 months of running from doctor to doctor and hearing everything from "it's a virus" to "it's likely lymphoma" (SED rate was 95 at diagnosis). She was treated with prednisone, imuran, flagyl and the SC diet. Was able to wean off all meds and just be on the SC diet. She was med-free for 2 years and on SCD in total for five years. Was off SCD for almost 2 years and health went ever-so-slowly downhill until this past spring, when labwork showed a serious flare (she is now almost 16 and VERY close-mouthed about sx). We are still working to get it under control, not helped by the fact that she is not particularly compliant in taking her meds (supposed to be budensoide, flagyl, colazol, iron/Vit C). She started back on SCD almost a month ago and that has been hard, too, as she is "out of practice" with it and is longing to be like her friends and go for pizza/ice cream.....
dd2 is 10 years old and dx'ed 3 years ago. Pretty easy-to-control case until last fall, when she has hospitalized for c diff and, while taking a ct scan to see if she was flaring as well (she was), it was noticed that she had pulmonary nodules. Many of them.....This has turned out to be more difficult to deal with than the GI sx. She has many necrobiotic nodules and they were resistant to 6 mos of prednisone (they did shrink but came back within weeks of stopping the prednisone). She has had 6 CT scans in the past year, so I worry, of course, about the long-term effects of all that radiation as well.
Just found out that last weekend's CT scan shows that, while some of the old nodules are smaller, there are many new ones, "some small and some quite large". She will be starting Remicade in the very near future, although that is only the best guess for how to help her, as there are only a handful of cases in the medical literature of people whose nodules were resistant to prednisone, and she is the youngest.
Glad to have found this forum. Thanks for listening
dd1 was dx'ed at age 8.5 after 3 months of running from doctor to doctor and hearing everything from "it's a virus" to "it's likely lymphoma" (SED rate was 95 at diagnosis). She was treated with prednisone, imuran, flagyl and the SC diet. Was able to wean off all meds and just be on the SC diet. She was med-free for 2 years and on SCD in total for five years. Was off SCD for almost 2 years and health went ever-so-slowly downhill until this past spring, when labwork showed a serious flare (she is now almost 16 and VERY close-mouthed about sx). We are still working to get it under control, not helped by the fact that she is not particularly compliant in taking her meds (supposed to be budensoide, flagyl, colazol, iron/Vit C). She started back on SCD almost a month ago and that has been hard, too, as she is "out of practice" with it and is longing to be like her friends and go for pizza/ice cream.....
dd2 is 10 years old and dx'ed 3 years ago. Pretty easy-to-control case until last fall, when she has hospitalized for c diff and, while taking a ct scan to see if she was flaring as well (she was), it was noticed that she had pulmonary nodules. Many of them.....This has turned out to be more difficult to deal with than the GI sx. She has many necrobiotic nodules and they were resistant to 6 mos of prednisone (they did shrink but came back within weeks of stopping the prednisone). She has had 6 CT scans in the past year, so I worry, of course, about the long-term effects of all that radiation as well.
Just found out that last weekend's CT scan shows that, while some of the old nodules are smaller, there are many new ones, "some small and some quite large". She will be starting Remicade in the very near future, although that is only the best guess for how to help her, as there are only a handful of cases in the medical literature of people whose nodules were resistant to prednisone, and she is the youngest.
Glad to have found this forum. Thanks for listening
