Portal hypertension, enlarged spleen and liver damage

[DanielleWhitfield4]

Can anyone give me any advice on portal hypertension, my 1 year old daughter has Biliary Atresia, she has the kasai operation at 6 weeks old, everything was going really well, she had her 12 month post op check and liver scan a few days ago and it's shown now that she has portal hypertension, enlarged spleen and some liver damage. I'm just wondering what will be next for us, and and advice possible would be appreciated. Gutted at them minute xx

[M45984371]

Hi, was there no portal hypertension and liver damage at the time of (and immediately after)the kasai? Your situation sounds normal, and it took our daughter a few years for the hypertension to settle. She always had liver damage, but her kasai was at 14 weeks, which was very late However it is the view of the consultant which is most important, so go with what they say. Hope that helps a bit.

[DanielleWhitfield4 in reply to M45984371]

Hi, the was some liver damage but never new of any portal hypertension. This is the first. Thanks for your reply.

[lmedal]

Hello, does your daughter have ascites though? My daughter is 14 months old now. Had Kasai at 52 days, a cholangitis at 2 months post Kasai, then things were generally going well after that (normal bili, despite other still-elevated liver numbers). We’re concerned with her belly that’s not getting smaller but the doctors mentioned that it’s due to her enlarged spleen plus gas. At 7 months, we observed her being short of breath and at one day she was screaming in pain. She was admitted soon after and that’s how we found out that she had moderate-severe ascites due to PH and because of that she’s listed for a transplant. Doctors said that my daughter’s condition is irreversible so she’ll ultimately need a new liver.

We’ve been waiting for 7 months now. Although it feels like forever, we’re enjoying every second as she’s still stable enough thanks to diuretics that helps maintain her ascites. I wish I knew about ascites before and pushed the team to check on her belly sooner so that she could get treatment that she needed early. I hope the best for your daughter!

[DanielleWhitfield4 in reply to lmedal]

Thanks you for you reply, my daughter has ascites few days after her kasai but not had it since, her stomach is bigger tho than I normal child and quite round so I'm assuming is because of the enlarged spleen etc, if goes any big tho told to take her hospital, we also have to watch for bleeding from the esophagus etc and visual varies / veins on stomach and to seek medical help if it happens. I just feel rather nervous as tho I'm waiting for things to happen and can't relax. Bit really been told much about what it's all about or what will happen next, and when you research i get more panicked coz portal hypertension doesnt sound good.

Xx

[Bettymay80 in reply to DanielleWhitfield4]

I'm so sorry to hear about your daughter ascites and portal hypertension. Are you able to measure her belly with a tape measure? I've seen adults take blood pressure medicine to reduce the pressure of the portal hypertension, I'm not sure if they do something of the sort for the little ones. I also put some drops of milk thistle in my babies bottle. I'm not sure if it helped from that exactly, but his liver enzymes normalized. Hope that helps. Praying for your little one.

[Alexandra2019 in reply to Bettymay80]

Hi.Our 16 month daughter also has BA

I was thinking to give her some milk thistle but not sure about dosage etc

Would you be able to tell us how much do you give to your little one please?

Thanks 😊

[Lois-Cldf Partner]

Hi Danielle, where do you live? x

[DanielleWhitfield4 in reply to Lois-Cldf]

Hi, I live in Haydock, St Helens.

[saileela1]

Do you want to try some alternative therapy along with regular treatment

[saileela1]

It is a ayurvedic herb

[saileela1]

also black radish juice helps-raphanus sativus niger. see the blog ndnr.com/gastrointestinal/s...

contact the naturopathic doc Dr Jill Stansbury . She is excellent. We reached her recently to help a friends son

[Alexandra2019 in reply to saileela1]

Hi!Our 16 month daughter Alexandra has BA

She’s doing well but we are concerned about her liver enzymes are going high and her doctors from King’s mentioned portal hypertension...

Would you be able to give us some more details about Dr Jill Stansbury please and her alternative therapy?

Many thanks 😊

[chrisrock]

Many kids develop Portal hypertension despite Kasai surgery. This generally means that bile drainage is not proper and there is chronic liver disease. Such kids need a proper assessment with a Pediatric Hepatologist to assess the severity of liver damage so that appropriate management can be done. Good nutrition with a high calorie and protein diet is also essential .