Anyone in a similar position??

Our 12week old Son has been having liver function tests every week since he was 6weeks old due to prolonged jaundice but his ALT enzyme was high then got even higher and now its on its way down bt is still twice as high as it should be. Ultrasounds are normal. Jings have got involved. He has another app at Kings next month for more blood tests. The dr mentioned if ALT still hasnt come down then biospy might b needed. Anyone else going through something similar? We arent being told much bt apparently thats bwcause they dnt know much.....

5 Replies

  • Hi, am sorry to hear about your son. Our son wasn't diagnosed with 'liver disease' until he was 8 weeks old, like you due to prolonged jaundice. We were also referred to kings. They explained that due to the fact there are literally 100 different liver conditions it could take a while to confirm his actual condition. At 11 weeks he had a biopsy, more traumatic for me as mum than him, then at 14 weeks he was diagnosed with alpha 1 ATD. I know it's a desperately frustrating and worrying times but you're in the best hands at kings. We found them so patient, feel free to ask them all the questions under the sun. I really hope you get a diagnosis soon. Xx

  • Thank u for the reply. We are just so frustrated as we keep gettin told different things by different drs (at local hosp not Kings). At one point his ALT enzyme rose to 154. The following week 124. The week after he had another LFT and dr said good news it has come dwn even more. A few days later we were called bk for a full yest of bloods and registrar said there hadnt been any improvement on ALT as it had only gone dwn to 122.So the other dr gt our hopes up for nothin. Whenever we get some gd news it turns out its not and drs are gettin it wrong. BlueNat77 was ur son hospitalised whole time or was he allowed home inbetween tests? X x

  • I completely understand, our local hospital and GP we're useless. Matthew was ill from 2 days old and it took then until he was 8 weeks to do the split bilirubin teat! Despite several requests and visits to them they just told us we were over worrying parents and fobbed us off!! Thank goodness for our health visitor who persisted and had meetings and made complaints to get us seen and the test done at his 8 week check. As soon as he had the test we were admitted to our local hospital while they liased with kings. He was in for 2 nights while they got his feed and meds sorted and an appt for Phillip Isaacs ward. We were never admitted to kings tho. Just day visits for tests, even on the day of his biopsy on mountbatten ward at kings we came home that evening. Have you actually been seen at kings yet? Xx

  • Unfortunately, our local hospital was still useless even after diagnosis! Matthews been admitted several times with chest infections/tonsilitus and they still try give him ibuprofen which he can't have. Every single time I have to make them ring kings as they don't believe me! We've now moved area so waiting to see if our new local is just as bad!

  • Yes we have been to Philip Isaacs too. Next time he has gt to go to the paeds liver unit.... cnt remember what ward. That must be so frustrating for you!!!! To look at my lil man u wpuldnt know there was anythin.wrong with him when u look at him.... he is so happy and alert for his age. I cant believe ir son was allowed home same day after biopsy!!!! How old is ur son now? And how is he now? X x

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