Bilirubin vs alk phosphatase

[Mumzylizzie]

Hi,

My son had his kasai when he at 54 weeks. He's already 1 month post kasai yesterday, now hes poop turn out into a bright yellow sometimes greenish yellow . Today hes had his 1st lft blood test 1month after kasai. What im worried about, last his total bilirubin is 180 before he had his kasai procedure and im not sure what is his alk phosphatase result. Today, his bilirubin drop to 120, but the alk phosphatase was high 445, his alp same high 200++ Is it normal for every baby after kasai procedure. Im just new to this.. Still waiting for dr to review the result this monday. His last month weight 4.6kg and now hes gain 4.8kg gain 200g, is there any advise how to baby gain weight and what formula best for baby post kasai?

[Mumzylizzie]

Im sorry not 54weeks its 54 days

[Annabishop]

Hi there

I did the exact same as you and after the month review went into panic mode and was looking at all the numbers. A Month after the Kasai isn’t long enough to give- but it’s really positive that the bilirubin has gone down from before the kasai and of course the poos have pigment!! They told me not to focus on alt/ alp/ ggt as these numbers will always be elevated for our babies. So try not to worry about those numbers (as hard as it is) they just want to see that the bilirubin is coming down at this stage. As for formula did the hospital not give you the formula they wanted him to be on?? And any weight gain I think is great for these little ones. Hope your baby boy is doing well and recovering nicely. X

[Mumzylizzie in reply to Annabishop]

Hi Annabishop thanks for your concerned, appreciate that ☺️ i'll try not worry too and after seeing doc for the LFT review, doc also said the same things just like you said a month after kasai isn't a long enough to give for the baby, but its a good sign the bili has gone down. As for formula, i already change to s26 gold, i heard so many baby gain weight when they consume this formula, and i thing it works for my baby. He gain 5.25kg from 4.8kg in 1 week. Thanks @Annabishop again, now how old your baby and hows his/her bili progress? Hope he/she recovering well too. X

[Dina1986 in reply to Mumzylizzie]

Hi, my daughter has different condition from your son’s but when she was a little baby doctors put her on alfare formula, but you can’t buy it without prescription. Ask your doctors about it, it’s really good one, good for building them up .

[Lois-Cldf Partner]

Hi Mumzylizzie if you are in the UK you can sign up for support with CLDF here: childliverdisease.org/cldf-...

If you are outside the UK you can still get info on our website: childliverdisease.org

If you have any non medical issues you wish to discuss you can contact me on [e-mail]