Help

My son was diagnosed at 6 weeks with ba (basm) he is now 16 months he has been in and out of hospital the last year being treated for colongitis my issue the now is he is not himself his poos are very light but took him to hospital they didn't do bloods said he was ok prob just hanging that's been 4 days still the same , am at my wit ends what to do now any ideas

4 Replies

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  • Hello. Have you spoken to your liver specialist hospital? Often local hospitals don't understand concerns with "liver babies".

  • Hi - I would really recommend that you call your specialist liver hospital and speak to them - they will be able to advise you what to do.....sometimes in my experience when the bile is not flowing properly the poo changes colour and this can be temporary or a sign that needs investigation....your regional centre should be able to help you.....good luck xx

  • Sorry to hear he is not himself. Did you get any answers?

    In my experience Mum's and Dad's know best, your instincts are rarely worng. I hope you got some advice from your liver centre, we had many many months of similar issues with our local hospitals and I wish I'd spoken directly with our liver centre more. I relied too much on the local units communicating with the centre, which they didn't. In hiensight I should have done it myself and picked up the phone more often for a second opinion or just advice.

    I often picked up somewthing was wrong with my daughter before the doctors could tell, we would take her in to hospital and they would discharge her after 24 hours then she would get worse at home. It's very stressful to then make the descision to take them back in a day after they've been discharged, it feels like you are going against them. Don't worry about hurting doctors feelings, my advice if you are not happy that he is well make your feelings very clear, it doesn't mean you have to be rude but you do often have to be assertive.

    They should always do bloods if they suspect Cholangitis or another infection, prompt treatment will make a big difference. Could you get some sort of protocol written up from the liver centre that you could take with you when you need to take him to local hospitals?

    best wishes

  • Thank you everyone for your help I took him back to hospital on Monday after speaking to my liver nurse ,we got bloods done slightly raised but nothing to concerning they say again keep an eye on him his stools still light hopefully just a blip and will be ack to himself soon if not i will be taking him back again thank you good to have some one else to talk to who understands x x

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