Scared!

[lafounk2]

Hi everyone,
As most of you know, my 16yo son, Joshua had his successful kidney transplant on December 15, 2010. I got a call from the transplant office yesterday to tell me that Josh tested positive for the Epstein-Barr virus (also known as mono). They are going to decrease his immunosuppression in hopes that his body will fight it off. I am so worried. They talked about this virus could turn into a form of cancer of the lympth nodes. Has anyone heard of this or experienced this before??:sad:

Worried sick mom,
Kelly

[pberggren1]

I know nothing about mono Kelly but I will keep Josh in my prayers as well as you and your family. What immunosuppressant is Josh on?

[lafounk2]

Josh is taking Prograf and Rapamune as his immunosuppresants. Thank you pberggren1

[Chris G]

I'm so sorry about your son Kelly. I'm a mom too, and I can't imagine the worry you must be experiencing. I sorry, I also have no experience with this, but am sending good thoughts your way. Keep us updated.

[Sangye]

Kelly, I'm sorry to hear this. It's definitely a concern in immune-compromised people. Do you know if the EBV titer was high? I imagine there is a little wiggle room in his immunosuppressant drug dosages, where they can lower them a bit without affecting the kidney transplant. As far as future risks of cancer, I suggest you try to stay in the present and deal with what is actually happening. You need all your energy right now. Hugs to you and Josh. :hug2:

[DEE]

Kelly sorry to hear your news I will be thinking off you Josh and your family .

[Daggar]

Hello Kelly,

Our thoughts are with you and Josh....

Holly was tested for EBV a couple of weeks ago due to unknown rises in liver enzymes.... the doctors did give us a breakdown of the risks with immunosuppressed individuals. Take solace that the doctors have to tell you the inherent risks -- not always the case.

What were Josh's symptoms leading up to the EBV comfirmation and how often were they doing lab work?

[lafounk2]

Hi,
To answer the questions regarding the titers. They were performing routine EBV testing when the results 2 weeks ago were "titers" less than 2,000. They re-tested Josh 2 weeks later and they are around 22,000. He has no symptoms (thank God!) so far. They decreased immonosuppression hoping that his immune system will fight it off. Reading about this online is very scarry. I'm not going to Google it any more.

[Sangye]

Kelly, I agree-- don't google it anymore. You are doing what you can and there's no sense in getting more info if you're not able to act on it. In someone without Wegs, holistic remedies can work well to help the body fight EBV. That isn't an option for us, since they stimulate the immune system.

[Daggar]

Sometimes that "google" thing can get us in trouble:unsure: -- the doctors will guide you! All our best!!

[freakyschizogirl]

i agree google is sometimes the enemy. A close friend of mine has a 2 year old who looks to have a form of vasculitis and she is reading lots of articles on line, before its even been diagnosed and causing herself unnecssary stress.

[pberggren1]

It's tough being a parent though. She just wants to find out what is wrong with her child. It is just a natural instinct.

[Jack]

This is probably less of a problem since the internet came about. When I was first diagnosed, my father looked up Wegener's in his medical book at home where it said that the disease was always fatal! At least these days he could have looked for alternatives much more easily.

[Daggar]

Kelly -- How is Joshua doing? Did they decrease his immunosuppression as you mentioned?