When Cody turned twelve in the winter of 2006, he was rarely sick, sailing through life without effort, a straight A student with a lot of friends. He was half way through sixth grade when he came home from a one-week field trip not feeling well. He’d had a case of diarrhea while away.
He came down with the flu, high fevers, and cough. This turned into pneumonia and he was given a course of antibiotics. He had just finished the antibiotic when he called out from the bathroom: there is blood in the toilet! Subsequent bowel movements remained bloody. Lab work showed an extremely low blood count. Cody needed two blood transfusions. He was admitted to a hospital where a colonoscopy showed severe inflammation throughout his large intestine, an enlarged spleen, thickened gallbladder wall, and dilated common bile ducts. A partially blocked bile duct was cleared by ballooning it clear during the endoscopy.
The GI on duty noted that Cody’s liver enzymes were high, and said he could have Primary Sclerosing Cholangitis. We weren’t fully aware of the meaning of PSC at this stage, partly because we didn’t want to know; we were focused on the immediate need to get the colitis under control. It took nearly five months for the bleeding to completely stop.
After two weeks in the hospital Cody returned home on a PICC line. He was taking Mercaptopurine, Asacol, Ursoliol, and a high dose of probiotics. Eight months after Cody first took ill he underwent a MRCP, a liver biopsy, and a flex scope. The Liver biopsy report read: “Severe portal fibrosis with moderate chronic inflammation and bile duct depletion consistent with PSC.”
This was a very painful time for me as a parent because the GI offered no hope or even much of a treatment. Even the liver specialist that we visited had no answer better than prescribing Ursodiol and monitoring the inevitable progression of the disease towards liver transplantation.
I began spending hours on line researching and talking to healthcare professionals about possible treatments, but none of these pursuits seemed to go anywhere. The flex scope had shown some still active colitis, so now the recommendation was three rounds of Remicade infusions, over the next three months. It took 16 months for Cody’s energy to rebound enough to allow him to work on applications to boarding high schools – a plan which seemed an unlikely dream because it would have him leave home in one year’s time.
More roadblocks appeared that same fall. Cody was diagnosed with Mononucleosis. He was taken off Mercaptopurine (6-MP) to avoid serious complications. He spent most of the 8th grade school year on the couch, visited by a home hospital teacher to keep him current with schoolwork. After the mono virus was long gone, Cody still suffered from constant fatigue. Anti-depressants were tried with no effect. All the while, Cody’s liver numbers were climbing, possibly due to the antidepressant medications. When Cody got word that he had been accepted at two of three top West Coast boarding schools, attending them still seemed like a distant dream.
My agony as a mother had reached another peak, and again I found myself spending hours on the computer searching for possible answers. That time I came across a posting on PSCMOMS describing a study at Stanford using oral vancomycin (I’ll use vanco for short) on 25 young PSC patients. The author of the posting described how, under the care of one of the researchers, Dr. Yinka Davies, her daughter was prescribed a full dose of vanco (1500 mg per day), and how, after about two months, her liver numbers had completely normalized, allowing the girl to resume a normal life.
We met with Dr. Kenneth Cox, the originator of the Stanford oral Vancomycin study, and with Dr. Davies, who is a clinical adjunct professor at Stanford University and has a clinical practice in Sacramento (together they share the Stanford Study patient load and serve as medical advisors to the Children’s PSC Foundation). By March of 2008, Cody was on a full dose of vanco. The effect was miraculous: within six weeks his energy returned almost to normal, and within four months, his liver numbers were also down to normal. That same Fall, Cody started boarding school.
In 2010, after two and a half years of vanco treatment, Dr. Davies performed Cody’s second liver biopsy. The pathologist’s new report read: “…mild portal fibrosis with associated mild portal chronic inflammation.”
Cody blossomed at boarding school. He finished with high honors, the top player and captain of the varsity squash team. Comparing the condition of my son, and his pathologists’ reports, before and after vanco, it is clear that the treatment saved Cody from the loss of his teenage years. I also believe that vanco was started in the nick of time. The pathologist noted, my son had not been far from developing scarring when the first biopsy was performed at the time of diagnosis in 2006.
After close to five years on vanco, I am still amazed that chance led me to come across the work of Dr. Davies and Dr. Cox, that the treatment worked exactly as the study indicated, and that it caused such a major improvement in the quality of Cody’s life and prospects for his future. This year Cody is a freshman at one of the best colleges on the East Cost.
I am sad to know that most GI’s and liver specialists still fail to inform children and parents about the Stanford study and the vanco option. Apparently, some don’t want to deal with the yearly insurance review and others cite an unproven risk of developing vancomycin resistance. Parents need to know that, while VRE stains (vancomycin-resistant enterococci) have increased through the predominant use of vancomycin — to treat C. Difficile infection by IV in hospitals — there are no known instances of resistance caused by oral vancomycin.
Please find out for yourselves about oral vancomycin.