Epstein–Barr virus (EBV) is something most people do not think about, or even know about. However, after my son’s liver transplant due to Alagille syndrome (ALGS), it is a big worry. My son is EBV positive. Any time I get the news that the virus is detectable, I become overwhelmed with worry about post-transplantation lymphoproliferative disorder (PTLD) and cancer.
During the summer of 2020, his EBV was detected out of nowhere. Within a few months, it was gone. The liver team said any time his body is fighting something his EBV could elevate, and chalked it up to the E. coli infection he had during the summer.
Fast forward to August 2021, and the EBV was positive again. This time the level was higher than in 2020. He had constantly been sick and fighting off viruses. The liver team suspected that was the culprit and hopefully his body would clear it on its own. He was already on the lowest dose of tacrolimus, so the plan was to monitor him for symptoms and retest in a month. Each time we tested, the level came back slightly higher then eventually started leveling out and remaining stable.
To help ease my mind with the concern I was feeling about PTLD, they advised me that serology lab tests that were done pretransplant and were positive, showing he was infected with the EBV prior to transplant, which lowers his risk for PTLD. I was also told his physical checks have been good and that his routine lab work hasn’t been problematic. They meet often with their colleagues in oncology and discuss any positive EBV cases. The HCP team was closely monitoring my son and meeting with colleagues in oncology often about his case and they all felt he was at low risk for PTLD.
Read more about therapies for ALGS
After a few months, it was decided we needed to take some steps to try to help lower the EBV since it was not budging. We were going to slowly wean down the CellCept® dose and remove the medicine from his regimen. After we dropped it, there wasn’t much change, so we decided to try to change from tacrolimus to sirolimus to help clear the EBV. After making this medicine change, we’ve closely been monitoring him. His EBV started to climb, but they thought it was because we were trying to work out a good dose of the medication for him and he was too suppressed at the time. After several weeks of getting a good dose, his EBV did start to come down a little.
The EBV has been slowly dropping over the last few weeks, however, is still detectable at a level that can be concerning. With all the information we have, we’ve decided that this just might be where his EBV level has decided to live. He is being closely monitored for any signs related to PTLD and there is a very fine line of tolerance. If his EBV number passes a certain threshold set or he starts to develop symptoms, the next line of defense is scoping him for an internal look at what may be brewing.
PTLD is very treatable, but it is very scary for a parent to even consider. The transplant and ALGS have been such a fight that I am not ready to take on something else like this. I am thankful for a team of health professionals who sit with me and go through every option and possibility, so I know what to look for, expect, and have data to run through in my head. These little things make such a big difference when faced with the fear of yet another unknown battle.