Stomach viruses can become challenging for those with rare diseases such as Alagille syndrome (ALGS). For my family, stomach viruses have been hard for us and have been a pain to figure out, treat, and get through.
Even more common viruses like astrovirus and norovirus have been difficult for us to deal with in my son. They have caused him to be hospitalized due to no urine output. More than that, these viruses that are simple for others have caused issues for him that seemed to linger for a few months. It caused an increase in lab work and of course, a change in medication dosage—all while trying to get my son’s body back to normal following his liver transplant.
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We have also dealt with more severe viruses like E Coli and C Diff. Since my son has elevated Epstein-Barr virus (EBV) levels, we are always monitoring him for certain symptoms that can be a sign of post-transplant lymphoproliferative disorder (PTLD), such as diarrhea. When he started with diarrhea it continued for a few weeks. We would track it and it started to slow down and was only a few days a week, which was nothing crazy, but it didn’t sit well with me.
I remember there were even certain meals he’d eat that would cause him to immediately need to go to the bathroom, which wasn’t normal for him. I eventually contacted the liver team to let them know what was going on. They decided since his diarrhea had been going on for a while and there were no other symptoms of PTLD that we would monitor his symptoms before any other actions were taken.
Collecting stool samples in a 5-year-old is not easy. We collected them at home in the containers we were given and took them to a local lab only to find out they were unable to process them since we didn’t use the containers that they provide. It was so frustrating.
We had a visit coming up at the children’s hospital so we decided we’d try to collect samples then. We were able to collect the samples successfully at the hospital during the visit and turned them in to the lab. Luckily turnaround times are pretty quick, so by the time we finished the visit and drove the 1-hour trip home, I received a call from the liver team letting me know that they found the C Diff virus in his stool. They advised that we’d need to start an antibiotic course which needed to be given several times a day for multiple days.
We were able to complete the antibiotic treatment and the C Diff cleared up. Thankfully, we didn’t have to do excess blood work because we were able to narrow down what it was and the entire time he had the virus his liver numbers looked great. We didn’t have to travel for labs more often or make any changes in his immune-suppression medications.