TESTING FOR BUDD- CHIARI SYNDROME

[Worriedmamabear]

hello - well we are 1 step forward and 2 back, my son as you know was quite ill for a long time and has had various tests done... at one point they thought cancer / leukemia as his infection levels were through the roof and he had lumber puncture etc,

We received a letter yesterday saying that as we are aware that is not cirrhosis and they think it could be Nodular Hyperplasia of the liver ( we were told this at his appointment in February but they wanted to do some more tests.

Now after a further review they they want to test for this Budd Chiari syndrome - ?

good news is the increased medication has resulted in no ascites symptoms for almost 3 weeks and he is starting to look more like himself.......

bad news is we still dont know, i know we are getting closer but this has been a full 15 months of him being unwell and at least 4 hospital admissions...

what can he / we expect we are really keen to control symptoms and get him back to work - he is a electrician .......

i just want him to be back to my son of 2016 fulltime job football 3 - 4 nights a week

its the simple things.....

he wont even google this syndrome as everything else he has googled has not be pleasant reading!

sorry for rambling

[Hidden]

Hi,

We have a publication on Budd Chiari syndrome that may be useful for your son and yourself to read.

britishlivertrust.org.uk/wp...

With regards to controlling symptoms, we would suggest your son discusses that with his medical team,

Warm wishes

Trust1

[Worriedmamabear in reply to Hidden]

Thank you very much - i have downloaded the publication - have a nice day

[Hidden in reply to Worriedmamabear]

You too

[Faithfull]

You ain't rambling on don't wrorry I'm the worste but we all need help and I ain't got answers on me own liver well it's cirrhosis then 5 times I've been told is it ain't i know it so hard with you kids no matter what age me daughters ill as well so it's hard but there's loads on here so supportive x

[Worriedmamabear in reply to Faithfull]

thank you

[Faithfull in reply to Worriedmamabear]

I get so state I reply to me self on here and out loud in public

[Hidden]

Hi

Just to let you know I'm thinking of you both. It is hard when your children are ill, my son had Crohn's disease and it's awful when he has a flare up. Fingers crossed, he's ok at the moment, final few months at uni!! Take care. Love and hugs Lynne xxxx

[Worriedmamabear in reply to Hidden]

thank you

[Hidden]

You are very welcome xxxx

[Jillymo]

Worry about a loved one in your case a beloved son you entitled to ramble. I hope you get some answer's soon 15 months is a long time of wondering and worrying. I also suffer with ascites symptoms and shall be seen at the liver department next month.......I look like a telly tubby at present.

It's hard to find words of comfort at times like this......big hugs.