Does anyone have any experience of EBV post transplant? I don't really know even what questions to ask but would be grateful to hear other people's experiences. My boy is 6, nearly a year post transplant and has been found to have high EBV DNA.
Thank you.
Is your little boy being given treatment for EBV? I would ask questions about that, and perhaps how long he would need off school, the schoolroom teachers in hospital are usually very helpful in coordinating getting work so he doesn't fall too far behind. Or if you get in touch with the school themselves. But it depends on how he is, if he is currently unwell with EBV then the things I just mentioned are perhaps a good idea, but really the next time you see a consultant in clinic or on the ward ask them to break it down for you and if you write it down yourself then you will be really clear on how this may impact your child. Clinical nurse specialists are also very good at explaining any queries you might have. Sorry I haven't been too helpful, but each child's health is quite different and may have different ramifications so it's always best to consult your team. Best of luck!
Sophie
Ps. I'm 17 years post transplant and I was diagnosed with EBV at 13, which is why I replied to this post.
Thank you, Sophie!
He doesn't seem unwell with the EBV (just ear infections at the moment) so isn't missing school but I suppose it's a day to day approach. Before transplant he did go to the school room at King's for a morning and loved it- although I did have to pretend to phone his teacher at school and ask her if she wouldn't mind!
Hope you're doing ok.
Hi, our daughter is 2 years post transplant and currently has a higher level ebv reading which is currently being monitored, as nimbus has put I would get as much advice and information from your clinical nurse team, the consultant at our daughters local hospital did explain it all to us but overall care an decisions are from her liver team, sorry can't be of anymore help but hope he remains well and levels come down soon x
Thank you. It's all useful and each child has their own way through these things but it's a new aspect for me so I'm taking it half a day at a time- like the old days pre-transplant! He's been taken off the immunosuppression and had steroid increased so we'll see. Thanks. x
My daughter is 4 years post transplant , and since day 1 she has had this same problem , they can't seem to sort it , it's because you or I have the immune system to fight it , but because of the tac they can't , doctors will just manage it , my daughter is currently having to have regular biopsies because they took her off tac to see if it would help
Thank you- hope she's ok!
Transplant Waiting List
Post transplanted for 15 years. 
PFIC 1
Biliary atresia 
Post Kasai_ biliary atresia 
