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Children's Liver Disease Foundation
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High conjugated bilirubin level

Hi guys, my 3 week old baby boy has got a high conjugated bilirubin level and they have taken LOTS of blood tests and we should get the results this week. Has anyone had any experience of this?

Thanks

Kate

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Hello. Sorry to hear your baby's going through this- and you. It's good the doctors are doing lots of tests even if it's horrible to experience because there are so many things to look for. Let's hope they get to the bottom of it soon. Keep in touch.

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Thank you for taking the time to reply! I will message when I know more

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Please do. I'll be thinking of you- seems like yesterday I was in your shoes but I now have a lively six year old who's doing well at school, has lovely friends and taught himself to ride a bike a couple of weeks ago. x

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Hi Kate, sorry to hear your baby boy is unwell. My son had the same around 6 weeks, after a LOT of blood tests kings confirmed around a week later that he has alpha 1 anti trypsin deficiency. We will be back at Kings in a few weeks and every 2 months after so they can do more blood tests and a scan to track its progress.

My son is now 12 weeks.

I hope you get some answers soon, thinking of you.

Jenni

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Hi

I have just read your comment... How is your son????

My son is 4wks old and we found out yesterday that he has alpha1 also.

Kings have been amazing but just unsure about what is coming up?????

Thank you

Nicola

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Hi Nicola,

Sorry to hear your little one has also been diagnosed with alpha 1. I know how scary it can be at the start as probably like us you'd never even heard of it before and have started googling it reading about the worst possible outcomes.

Our little one Jack is now 9 months and is doing fantastically! In fact you wouldn't know there was a thing wrong with him. He has piled on the weight and is now a super chunk at 20lbs!! He started sitting up and rolling over at xmas and is almost crawling so definitely developing as he should be :)

We have been back to Kings twice for blood tests and at our last appointment 3 weeks ago he also had a liver scan as he did when he was first diagnosed. It showed that his spleen is enlarged as the blood that flows from the spleen through the liver is not flowing as smoothly as it should due to the liver being congested with all the alpha 1. That's how I understand it anyway. They said that's very normal for a child with alpha 1 and we just need to keep an eye on it.

Do you have any other children?Xx

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My daughter did and she was diagnosed with biliary atresia, what are they saying it may be?

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Hi Kate, where have the blood tests been done?

My son went jaundice at 7 weeks and my local did blood and urine tests which were abnormal and so he was referred to King's College Hospital for further tests.

They did bloods and other tests and were able to diagnose him the next day.

I hope you get the results soon,

Jo x

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Hi, Arrowe park hospital on the wirral. I've had a lot of problems since delivery so I don't really trust them. Hopefully I can get hi referred on Friday when I see the consultant for his results. Every day is dragging till I find out :(

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Let's hope so. The children's liver units are very good, if it turns out to be a long term liver problem. The waiting is very, very hard and upsetting but don't forget to enjoy your little baby meanwhile.

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Thanks, I can't stop hugging him I'm so frightened about what's wrong with him

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Of course you are! The medical issues make you feel helpless but the thing you can do best is give him massive love!

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I can definitely do that :)

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Just seen your replies Kate, sorry. I'm also sorry they are making you wait so long for the results :/ Hopefully you'll get some answers tomorrow and then you'll know definitely if there is a problem or not. If there is something there I hope they will refer you to one of the liver units asap so your son can get the best treatment. Let us know how it goes tomorrow. Will be thinking of you. Keep up the hugs, they're good for you too ;) - Jo x

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They said his alpha 1 anitriptilase(sorry for spelling) level is 1.0 and it should be atleast 1.1, has anyone had any experience of this? Thanks

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Hi Kate, I assume thats the same as what my son had as its the same name. They never told me his levels were high or what they should be they just said that his diagnosis was alpha 1 anti trypsin deficiency. They found that out after taking blood from him. Are you at a specialist liver unit now?

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No the dr was trying to get hold of Birmingham all day Friday, he said he'll have to try again on Monday :(

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Poor you, what a wait that is! We're all thinking of you. Hope you're managing to get some big babylove in this weekend while you're waiting. xx

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We've had 2 big days out to keep us busy and stop us sitting at home and googling! Hopefully will get somewhere tomorrow.x

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Well done- the only way. Any more news? x

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Waiting for a bed to become available at Birmingham.x

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How are you doing?

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We've been waiting for a bed at Birmingham for a week now :( he's also got a problem with his cortisol now so waiting to be admitted to another hospital for that. I feel like I'm in a nightmare x

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Poor you, and him. Thinking of you... xx

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Thank you xx

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Are you ok? Any news? XX

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Still no bed so we've got an outpatient appointment on Tuesday. Will be glad to see someone who hopefully knows what they are doing :)

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Hi Kate, I have just seen your messages and I hope you and your baby are doing ok????? I live in park gate Wirral and my daughter was in arrow park with jaundice at 6 weeks... It turned out to be biliary atresia. She was treated in Leeds and is now doing really well, she will be one in 2 weeks.... If u have any questions or need a chat I am happy to help xxxxxxxxxxxxxx we are in arrow quite a lot now with Imogen xxxxxx

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Thank you so much that's very kind of you. We saw the specialist today in Birmingham and she was just wonderful, they did lots of tests and were back in a couple of weeks for the results. It was such a relief to talk to someone who knew what they were talking about! Fingers crossed we can get my little man sorted out now. So glad your little girl is doing so well!x

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Oh that's good to hear that something is being sorted, these specialist liver units are truly amazing, we were in Leeds for just over 3 weeks and can not fault them. We also have a lot of checks in arrow park and we can not fault them either to be honest, at first we found them frustrating as they don't know much about livers, but whilst we were in Leeds when Imogen was having the operation the arrow park dr was phoning all the time learning about her condition and now when we see him I think he is fantastic. I hope your little boy gets sorted soon Xxxxx

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Any news Kate?

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Still waiting for alpha one phenotype, it's been a month now :( congugated bilirubin fraction is dropping slowly thank goodness x

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Hello. How are things? x

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Thankfully he hasn't got alpha one but we are still waiting for other results. Back in Birmingham in 2 weeks so hoping for more results then. Thank you for thinking of me :) x

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Hello- only just seen your reply! Keep us posted, won't you? Hope he's doing ok- and you! xx

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Back in Birmingham on Tuesday. Will keep you all informed :) x

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Any news Kate? X

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Hi guys, he's had neonatal hepatitis.dr is hopeful it's resolving just one result still high. Thanks for ur continued support x

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Hi Kate, I know this thread is 3 years old but if you happen to read your msg..can you tell me how high your baby's conjugated bilirubin was at when he was admitted at 3 weeks? So far these tests (BA, alpha 1, cmv) came back negative for my baby boy and his bili has been up and down. He's a big preemie, born at 29 weeks so doctors think it's his prematurity. He's now 34 weeks and still jaundice. I'm thinking he may also have idiopathic neonatal hepatitis because the GI aren't too worried and genetics aren't running any test yet. The other results we're waiting are Alagille syndrome and metabolic disorders.

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Hello Karura. I know its been a year since you posted this. is there any update on your baby? I have a 36 preemie who has high conjugated Billi

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