No diagnosis

My 2 year old son was admitted 3 months ago with acute hepatitis, after weeks of taking him to the GP and getting sent home and then a week of visiting A&E everyday to be sent home. He was vomiting, his urine was like lucozade and in the final week before being admitted had developed jaundis (I was told my son wasn't yellow and sent home)

He is now under the amazing team at Kings. His biopsy showed he has some form of liver disease but we are still non the wiser. He is having a metabolic profile next week so hoping for some answers after that. I am just wondering how long it took people to get their diagnosis and if there is anyone else out there with a similar situation. The unknown is playing really heavy on my mind :o(

Any advise or stories would be appreciated.

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  • Hi Kimberlia

    I must say you in the best place, Kings has an excellent reputation and is a leader in children's liver disease.

    With regard to how long it takes to get diagnosis, each case is very different so don't get too worried about how long it takes the important thing is you little man is in the right place with a fantastic support team.

    Do get in touch if you would like a chat or information

    Jacquie

    visit: childliverdisease.org

  • Thank you, yes you are right Kings have been great so far, cannot fault them at all :o)

  • Hi.

    I'm sorry you have no diagnosis.3 years on we still have no diagnosis for my son Conor and probably never will.

    I've learnt to draw a big line over what has happened before and look to the future about how to manage /treat it.

    I've had 3 years of "what did I do while pregnant" etc. I beat myself up and it never helped anyone. A waste of energy.

    Good luck . Check out liver mums on Facebook if u are not already on . A nice group for support.

    My son had frank haematuria for 3 weeks and my local said it was a virus.

    Wish u all the best.

    Elaine. Xxxx

  • Thank you Yorkmum, oh that's sounds hard, 3 years wow! I thought 3 months was long. It's mad because I new absolutely nothing about the liver before my son became poorly. I had been doing the same have I done something while I was pregnant. He was vomiting blood as a new born but the hospital told me it was my blood from delivery and he had his stomac washed out (now I wonder if that had anything to do with it) you just rack your brains all the time. Currently trying to get travel insurance for a holiday we booked before he got poorly and that's not going great! Seems like it's one hurdle after another :o) I have requested to become a member of the liver mums but not had a response yet. Thanks so much for the reply x

  • Oh no what an awful time. Thank goodness you are strong and persistent and kept going back to A and E. I know you really want answers after all this time and the wait is awful but the liver tea nn3 s are excellent

  • Sorry hit submit by mistake!

    The liver teams are excellent. We had similar problems with health professionals telling me I was a neurotic mother but once we got to the liver team things did move forward. They need to do all the tests and unfortunately they take time.

    Hope you get some answers soon.

    Take care and well done for being strong and determined for your little one.

  • Yea fingers crossed for some answers soon. Even family thought I was over reacting! So glad I kept going back! x

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