Long term after Kasai operation - Children's Liver ...

Children's Liver Disease Foundation
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Long term after Kasai operation

Haytham
Haytham
12 Replies

My son had his Kasai when he was at 14 weeks old . His is going well and now he is two years old and every three months we did liver function test and blood test but the gamma GT is always high from 116 up to 132 H

my first question is I have read a lot through google that the long term of Kasai is from 5 up to 10 years old and then we shall go to liver transportation and also the operation shall be done from 8 to 12 weeks while my child had the operation as i said before at 14 weeks any one can advise if this information correct ?

My second question He takes now the vitamins : Hi cal +decal b12+ Vid3 and ursofal+ foicacid can any one tell me what can i do to protect my son from any bad impact in the future and what kind of food shall be recommend and what kind of food shall be avoid ?

Finally i believe that any thing can happened in the future and God only can bless my son but from your experience what is the worst case scenario for my son after the kasai operation

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Haytham

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M45984371

Hi,

our 12 year old daughter had a kasai at 14 weeks, she is very well, and has not presented any symptoms that would need a liver transplant.We were told at the post-kasai stage she would definitely have to have a liver transplant at age 11 or 12 years, however each case is different and depends greatly on overall health of the child.

We were told a kasai should be done at 6 weeks, which is usually the first point it can be diagnosed, therefore 14 weeks IS late.

If your son does need a liver transplant, then so be it. There is a very high recovery rate. We are in the UK, where the level of expertise is high. All the vitamins and supplements you are giving him are good, and keep him on as healthy a diet as you can. Our daughter thrived on prescription Vitamin K.

Best of luck to you.

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Haytham
Haytham
in reply to M45984371

Thanks a lot for your response my son now a days is good thank god but I am talking about the future so I am asking about what kind of food shall be recommend and what kind of food shall be avoid?

Also what is the name of the prescription vitamin K to use it under the supervise of my doctor ?

Finally I need the contact of the UK medical center that are specialized in my son case .

Appreciate your support

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M45984371
M45984371
in reply to Haytham

konakion (generic name phytonadione). Our daughter was treated at Kings College Hospital London

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adamsmum123

Hi I am not too sure on some of the questions but just wanted to let you know my son Adam is 21 years old biliary atresia no transplant and had his Kasai at 12 weeks. He is doing well he has had some portal hypertension and varices banded but just gets up and carries on as if it was nothing :)

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112adsd
112adsd
in reply to adamsmum123

Hello ,

My son had kasai procedure at 7 weeks and then because of leakeage he had one more surgery at 8 weeks. Then the doctors said there might be one more leakage and went in one more time. But actual procedure was done at 8 weeks.

His bili levels went down 1 week after surgery but they are going up since couple weeks and doctors are already talking about liver transplant. Is it a sign of failed kasai?

He is on vitamin k and ursodoil and other antibiotics to prevent infection.

The doctors desperately want to have his weight increased. Inspite of the fact that he was tolearing breastmilk doctors said that he need to gain weight for transplant and put him on formula.

Am not sure what to do. Can we request for an ultrasound to see if the surgery was done correctly or if bile is draining. Is there anyway or any tests to find if surgery is successful?

Please help . Am in united states of america

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Haytham
Haytham
in reply to 112adsd

Hello , I wish to him speedy recovery ISA , God bless your son look i am not a doctor but from my experience with my son there are a lot of test the most important test is Liver function test specifically the Gamma GT if it is very high , and if his eyes still yellow •What to call the doctor for: Fever, vomiting, any redness or drainage from the surgical wound, worsening jaundice

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112adsd
112adsd
in reply to Haytham

Thank u..

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Haytham

Could you please send to me what kind of supplement and medic an he get and what kind of foods i shall avoid

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keacher

My son is 9 and had the kasai at 3 weeks old. He has had a few problems with ascites and cholangitis but is doing very well and is very healthy at present. I don't think anyone can know when their child will need a transplant as every body is different and every child reacts differently.

My son takes Ursofalk, Vitamin K, Vitamin E and Abidec (multi vitamin). These are all prescribed by Kings. There are no foods he cannot have, as far as i'm aware. Just a healthy, balanced diet. He eats sweets like most kids, but I also make sure he eats vegetables and fruit. He lives life the same as his sister, he does Rugby, Cubs and taekwondo and goes away to camp with the other children. I know one day he will have to stop some of the sports, but until then, we will carry on as usual.

I remember focusing a lot on transplant when Alfie was younger, but now he's older we take every day as it comes. We've lived in other countries and travelled quite a lot and nothing stops us getting on.

Keacher

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4rie
4rie
in reply to keacher

Hi, i know it s an old post - but as you mention that you guys travel a lot, do you take travel insurance?

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keacher
keacher
in reply to 4rie

Hi, Yes we always take travel insurance, but we have so far been lucky enough not to use it. We are British and now uk based, but my son was born in Paris and we recently lived in Bulgaria for 3 years. In both of those countries we had medical insurance covered by my son's dad's work, so again very lucky.

I would never travel without it as all of our emergencies have been in France and Bulgaria and we've got the same care as uk without any stress. x

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