My daughter had Kasai procedure some 12 years ago aged 9 months after being diagnosed with colechdocal cyct.

[skinna]

She has been extremely well since but has been "under the weather" for past 3 months, feeling a little nauseous, continual stomach ache and very lethargic. We have rested her from all activities and are doing our best to keep her in school. Visits to doctors has resulted in blood tests, urine test and Ultrasound but all clear. She has been prescribed anti acid medication for indigestion and migraine tablets for a migraine in your tummy? I have obviously made the GP aware of my daughters history and do not want to appear an anxious overprotective mother but wonder if these recent symptoms could be in anyway connected with her Kasai and whether I should have her referred back to Liver unit? Does anyone have any similar stories?

[Yorkmum]

Go with your gut instincts. Ask to see a specialist. My son was told he had a virus and was sent home initially. I kept taking him back to hospital and they looke into it further. Maybe a blood test at go to check liver function and urinalys is the place to start. X

[rockyraina]

Hi, Not sure where you are in the country but we are linked with Birmingham childrens hospital and when we are not sure or need advise we call the liver team at BCH who have a wealth of experiance and are able to guide us.

bch.nhs.uk/content/liver-unit

hope this will be helpful and all is well.

Take care

Cheers

[Grace2012]

Hi there, I agree ask to be referred to the liver unit for review by a specialist. They can do more in depth tests and provide specific advice on whether the symptoms are related to your daughters surgery.

Our daughter has recently undergone a few surgery's at Leeds Liver Unit due to a choledochal cyst, she is also 9 months old. We have been advised by specialists that she will be under the liver team for review until she is at least a young adult and maybe longer.

As a mum your looking out for your daughter so don't feel over protective, I agree with yorkmum go with your instincts. I hope all goes well x

[skinna in reply to Grace2012]

Thank you, incidentally my daughters name is Grace! She was discharged from Birmingham Children's after about 10 years as she has been been so well post op but with the understanding that I could take her back if I had any worries so that's what I must do! I will let you all know how I get on.

[Grace2012 in reply to skinna]

That's fine. What a coincidence! its our daughters middle name and we love it. It's good to hear that she has been so well following her operation, good luck with everything at Birmingham and do let us know.

[Grace2012 in reply to Grace2012]

Hi there, how is your daughter doing? Just wondered whether you managed to see a specialist and if things were ok. Hope so, x

[Claresmom]

Hi, my daughter had a successful Kasai in 1991 when she was just 10 weeks old. The BCH have a brilliant Liver Direct Team, who are always helpful and will give advice. Always trust your instinct ,you are her mom and no one knows their child better than a mom

[Victoria2]

Hi skinna,

Still amazed that they discharged you when your daughter was 10, I'm 54 and was born with a combined choledochal cyst /biliary atresia and have had 7 ops since my first at 3 weeks old and iI have always had a specialist even during the 6 well years between 4 and 13 years old when the cholangitis started again. i've ended up with a complication called bacterial overgrowth of the roux en y loop that was put in when I was 29, I had 4 years well and than the pain started and ended up continuous exasperated by food and movement. Not saying that this is what is wrong with your young lady but you do not have to have bad bloodtests for something to be wrong. It has taken 17 years to get a diagnose because no body was looking once the tests came back normal--i was just expected to take more and more painkillers and continue to eat no matter what. i had cholangitis amongst the severest attacks of pain but it has taken years for the blood tests to get really bad even with those however my symptoms are perfect for bacterial overgrowth. I don't eat anymore and live on a liquid diet to try and keep the pain under better control. By accident I have had the right op already for this condition but I think it has been left so long it hasn't work , so i am getting tests in february and hopefully they are thinking of joining my liver directly to the duodenum and cutting out the loop of bowel causing the problem.

I hope you have been in contact with Birmingham now and have an appointment to sort your daughters symptoms out.