Post Transplant - Complications?

[noBrasil]

Hi all,

My baby daughter was diagnosed with AML in May 2011. After getting the leukaemia in to remission, she had a relapse in July 2012. We were very lucky to find her a compatible donor, as well as finding a hospital space to do the transplant (we're using the Brazilian public health system, which is challenging). She is to turn 3 years old next month

She had the transplant just before Christmas 2012 and all seemed to be going well after the standard tough times. However, when she was released from hospital just 20 days after the transplant I was concerned. Is this not really early to go home after a transplant?

She started to get worse at home. It's tough enough getting a toddler to take medicines but she was vomiting non-stop ( which I would assume includes vomiting any medicines) to the point that she is now back in hospital. (Not the nice hospital where she received the transplant, but a lower grade one).

She is still vomiting almost non-stop (or trying, as there's nothing to throw up). Now in hospital she is on a drip so atleast she will remain hydrated. But any food she's getting via a tube to her stomach (forgotten the word in English! wow! In Portuguese it's 'sonda') is getting thrown up rapidly, so she is getting worryingly thin . She's vomiting this bright liquid, that i'm not sure if it's bile or catarrh. She has quite bad mucovitis but won't let anyone clean all of this crap out of her mouth, due to her discomfort.

Her eyes and skin are quite yellow, skin very dry and rough....it seems the donated bone marrow is rejecting her liver.

I'm very worried.... not sure what I'm looking for here, but I'm just hoping other people have been through all this and it's all normal? She's gotten a pretty bad ride, and I need her to start improving soon

I'm just hugely worried that she was sent home early from hospital due to some kind of financial concern, and now she's worse off

Whilst looking back at what I've written, I've been browsing other threads here...seems these issues are common. So i'm hoping all is good . Just my daughter's mother is rather negative at times, and it really brings me down

[evansmom]

Hi there,

So sorry to hear about your baby girl. 20 days post transplant is VERY early to discharge a patient, nevermind a three year old.

The yellow eyes and skin and the vomiting of what sounds like bile, very much indicates liver dysfunction and could possibly be GVH of the liver, for which steroids and other immune suppressing medications would need to be started.

Because this is quite likely a post transplant complication, it seems to me that you should be able to have your daughter transferred immediately to her transplant hospital. What does this current hospital's doctors know about managing graft versus host disease? Not too much likely.

Do everything you can to have her transferred.

Have the nurses told you what her liver enzymes and bilirubin level are? What medications was your daughter sent home on?

[noBrasil]

Hi evansmom, thank you for the caring reply.

Her doctors have said it is certainly like to be GVH of the liver. Just she is getting it rather badly. She's been taking Ursacol for her liver, I'll have to look at the updated list of her medications.

We're currently in the local (public) children's hospital. In the oncology department, so I hope they know something about GVH! Of course I am concerned. I'm just not sure how to bring it up with her doctor without being offensive; questioning the doctor's judgement and whether she'd put hospital/public money before a child's wellbeing. Perhaps the specialised transplant unit of the other hospital is only for the transplant itself and not aftercare, i dont know.

I'll ask the nurses once I've figured out how to translate those in to Portuguese. Thanks. Typing this on a phone on an awful Brazilian network, so apologies for my writing!

[noBrasil]

Ok Bilirubin - 34.68mg (it was 40 the day before, we want that low right? Will see tomorrow)

Others i hope/think may be liver related:

Alanina aminotransferasc - 89 U/L
Asparato amino - 74 U/L

[evansmom]

This could be hemolysis (destruction) of red blood cells due to medication such as cyclosporin or tacrolimus or due to donor/recipient blood type mismatch (if your daughter was O+ and the donor was A+, for example).

The bili is a bit high but the enzymes aren't too bad. To check for presence of hemolysis, the LDH would be high, the haptoglobin would be low and there would be schistocytes (bitten red blood cells) under a microscope.

Hopefully the bili level will be lower tomorrow and this settles out. How are her kidney numbers, the urea and creatinine?

[noBrasil]

Certainly sounds like you know your stuff!

Donor/recipient are different blood groups yes, so this is a problem (also my daughter's blood group is changing now). Are there ways around this mismatch? Surely it's a common situation.

I'll take a look at the kidney results tomorrow. Thanks again!

[noBrasil]

Seems she has GvsH pretty bad . Her liver/stomach are getting better, but now her skin is getting bar. I'm worried how we can stop infections if her skin is peeling off :/

[Momhope]

how is daughter doing? we have not heard from you