I am a working wife and mother with two little girls, 5 & 11. I work in the mortgage industry which requires a lot of patience and concentration. The rules are always changing and I have to adjust accordingly or risk non compliance. I feel like I have 2 full time jobs between my regular job and managing my daughter’s disease. My hands are full and I’m at my wits end!
Desperate but Still Hopeful
My 11 year old daughter Tianna started presenting symptoms when she was 2. She was seen by a specialist at Mass General Hospital who couldn’t give us a diagnosis after performing a liver biopsy, colonoscopy and endoscopy. During that time I worked with a natural path doctor. We were able to determine that Tianna had food allergies, by doing some allergy tests that were not available in “mainstream” medicine.
After changing her diet we were able to get her back on her feet. When she was 5 she got an intestinal infection which her pediatrician wouldn’t treat. We went back to Mass General and had another liver biopsy, colonoscopy and endoscopy. Each time that she has had a prolonged flare her liver enzymes have been elevated. We left with a diagnosis of Primary Sclerosing Chloangitis and Crohn’s disease.
Again we worked with the natural path doctor changed her diet and she recovered with her liver numbers returning to normal. (We were told that this is unheard of with PSC). This past summer she started experiencing symptoms again, we started going back and forth to Boston again and had another colonoscopy and endoscopy in September. In October she got c-diff, which really knocked her on her ass.
Since then she has been on prednisone, vancomycin, balsalazide, ursodiol, Imuran, probiotics and vitamin D. She just had another colonoscopy last week (Jan. 9th, 14) her specialist determined that she now has ulcerative colitis, not Crohn’s and not PSC. She informed me that we need to look at medication management and if things get worse we can take out her colon. I’m at a complete loss at this point and no longer want to sit and watch my child suffer, Tianna is also done being treated like a lab rat. We started the SCD today and committed to giving it 2 months. So far today she has had 3 bloody very loose movements. We are also following up with the natural path doctor in early Februar y. Any advice that other sufferers could offer I’d be more than grateful to receive.
written by Wendy