Children's Liver Disease Foundation

Hi I am new to this''' I would like to talk to some people who are goin or been through same situation as I am goin through now.

leather
Posted by leather
16 Jan 2013
10 comments

My daughter was diagnosed with billiary atresia at 8 weeks had the Kasai at 9 weeks. Everything been goin good until recently we new she very small for her age (7month) weighs 11lb been told by doctors if she has not put weight on by 11feb at next appointment she will be admitted to hospital for few days to be tube feed if that still dose not work will be put on liver transplant list. I finding it very hard to deal with as she a very happy baby you would think that thay is nothing wrong with her apart from her been tiny and looks abit yellow I would just like to speak to people who been through same x

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10 comments

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anonymous
17 Jan 2013

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natalie24xxxx
natalie24xxxx
17 Jan 2013
Hiya hun.. Silly question hope u ok. My boy is 13 weeks today they thought he same thing but in the end he got aphal 1 another liver diesease. He dipping weight to hun.. Must be hard. . Junior my boy on 7 lots of meds and bk n for hosp he just like ur lil one normal baby.. If u wanna chat add me on fb. natalie louise griffiths.. Me and partner profile pic me got glasses and curl hair x

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Sunshine74
Sunshine74
17 Jan 2013
Hi there
My son was diagnosed with biliary atresia at 10 weeks. He had a kasai but due to his late presentation was on the transplant list at 6 months. He was very small with ascites. The reason he went on the list was due to infection however. Kings do everything they can to keep children well and delay transplant as long as they are well. We were on the list for a very short time and Alex is now amazing. I know how frightening all the options seem but we put our trust in the team and they made the right decision on our behalf. I would be really happy to talk again as I had some amazing support throughout from other parents.
Keep strong
Kelly x

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leather
leather
17 Jan 2013
hi thanx for getting back to me,,yes my little girl willow is on lots of medication to she a very happy little girl allways smileing sleeps right through she just perfect and I find it hard to be goin through all this we go to leeds hospital wich is a good 150miles from were we live,,liver unit at leeds are brilliant when we thay I just feel like I have no one to talk to. thay tell us stuff at meeting what the next plan is but that's it I feel like thay don't talk us through it. I will try and add you now Natalie my profile pic of my little girl my name becky leather x

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Lisa-CLDF
Lisa-CLDF CLDF
17 Jan 2013
A post has been deleted as it contained personal contact details. CLDF advises that you do not share contact details as posts on this community are viewable publicly. This is also stated in the HealthUnlocked user guidelines.

If you would like to exchange contact details and information with another user, please use the ‘messages’ function where you can send a private message.

Thank you.

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leather
leather
17 Jan 2013
hi Kelly so did your little boy have the liver transplant ? x

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poppyandsam
poppyandsam
17 Jan 2013
Try not to worry and be brave. Our little girl was diagnosed with BA late at 11 weeks and her attempted Kasai was not possible so we spent most of last year on the transplant list. It is a very worrying and emotional time, not really knowing what is happening, what to expect etc. She ended up being tube fed for about 6 months and it wasn't to bad at all - it even became a game of how often she could pull the tube out - in the end we put it back in ourselves (it only takes a minute or so). They will only suggest your daughter is tube fed if she needs it. Our daughter is now 15 months old and had her transplant in September and is doing brilliantly. Just remember if she is transplant listed to ask about living donor transplants - that is what we had to do and both Mum and daughter are great now. The hospital are not allowed to say much about living donor due to ethics etc. but it is best to set the ball rolling sooner rather than later.
Above all try to be brave and not get too frightened.

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leather
leather
17 Jan 2013
Hiya,,,We were told that willow will need a full liver transplant we allready asked about living donor. Her liver test are cumin back ok thay main problem is her not putting on any weight so if the tube feed worked be great if not be put on liver transplant list. But i know thay wouldt surgest it if thay didnt think that was best x

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danielsmum
danielsmum
19 Jan 2013
Hi I'm another parent who knows what you are going through. My son is 13 now, he had kasai at 8 weeks. He like your daughter did not put on weight and I was given the option of tube feeding which started at 9 months old and he did not stop until he was 7 years old. This is what kept him well I believe, he was tube fed in the evening every night. At 2 he developed an infection in his liver and was told that a some point would need a transplant. That day came when he was 6 and he has done so well since. As others have said put your trust in the professionals and they will get you through this. Obviously CLDF will be able to help with info as well. You're obviously doing a really good job and your daughter is very happy. Best wishes x

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Monkey2419
Monkey2419
23 Jan 2013
Hi. My daughter has BA too and had late diagnosis at 11 weeks with Kasai at 12 weeks. She too had a rough time with weight gain and it took a good few changes of prescription milk to start getting her to gain weight. She is still very much on the petite side at 19 months but as her weight gain has has been consistent although slow,Kings are happy with her progress.
She's developing portal Hypertension and her spleen is still increasing in size and her liver is continuing to be scarred so they've said that at some point she will have to go on transplant list.
It's a scary time but the hospital have been great at explaining things and possible outcomes for future. Maybe have another meeting with the liver team and ask for things to be explained more xx

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leather
leather
25 Jan 2013
Hiya,,How much dose your daughter weigh now if you dont mind me asking xx

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