Jake’s Story

Jake was an active, happy toddler – curious about every mechanical item (the vacuum was a particular favorite) and ready to climb every hill, tree, or ladder. When Jake was two, in January, he had a sinus infection and a round of antibiotics. Shortly after, he had severe constipation with very large, but soft, yellow stools and he began to lose his appetite and complain that his tummy hurt. Jake’s pediatrician didn’t see an immediate cause for concern, and the sinus infection had cleared, so we were sent home with assurances that things would soon return to normal. But February brought many days with a general lack of desire to eat. The daily walk that once was full of exuberance for our son sometimes became an effort for him. Jake’s grandmother, during February break, really noticed a difference, as she hadn’t seen him in two months. His face was beginning to look thin to us, and he would only eat with coaxing or while distracted. February and March brought more visits to the doctor’s office, and finally, the pediatrician reluctantly agreed to run some tests, although he expected the results to come back normal. A very surprised pediatrician called back that the lab tests were very abnormal, with very high liver function tests, abnormal white count results, and other out of range results. Thus began a five month painful journey of various tests and hospital procedures which culminated in a diagnosis of PSC, with a very kind pathologist who personally, and as gently as possible, broke the news that this was a textbook, aggressive case of PSC, and we should prepare ourselves for an impending liver transplant.

Jake’s story may have ended very differently, as this was back in 2002, if not for the first paper Dr. Cox published in 1996 describing 3 cases of PSC treated with vancomycin. Although the data was limited to 3 cases, the results were startling. If our toddler achieved those same results, we felt his future would look very different. Against the advice of our local hepatologist, we took the chance, and put Jake on vancomycin – and we’ve never looked back. Our son clearly felt better within days, and the labs quickly normalized. The repeat MRCP and liver biopsy both showed dramatic improvements, and subsequent scans have been normal.

Yes, Jake has now spent over 10 years on varying doses of vancomycin. He may be a candidate to taper off vancomycn completely. In the interim, we hope and pray that the research and trial will lead to the cause of PSC and a permanent cure. While we wait, though, Jake is happy and healthy – enjoying his friends, his teen years, and the sports and activities he loves.

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