Post kasai

[SELVARAJA]

My son had kasai day 46 of life. From then his bili going down in trend, he had viral fever twice, not cologitis as per Doctors. His bili went up a bit those two times, and went down again. Just his ggt is increasing slowly. 1700 now. Doctor told us not to worry yet. But those numbers really making us worry, apart from that ggt son is a very active n Cheerful boy. I can't afford to see him suffer more. We are not rdy physically, mentally and financially for the next stage... His kasai days was painful for us first time parents... Anybody with similar conditions?

[Vineyard2020]

I think the fact his bilirubin is going down is a very good sign. My sons never did.

[lynguyen in reply to Vineyard2020]

How is your son? Would he have his transplant soon?

[Vineyard2020 in reply to lynguyen]

He hasn’t been listed for transplant yet because he is gaining weight and infection free but his Bili numbers are rising so we know it is coming.

[lynguyen in reply to Vineyard2020]

Glad to know he is doing ok!

[Vineyard2020]

My doctors at Boston children’s hospital told us to worry about Bili numbers and ignore ggt numbers.

[lynguyen]

Yes billi continues to drop is a good sign, enzymes numbers will take months to drop and there is nothing we can do but to wait anxiously! My daughter responded good to the surgery but we ended up at the hospital like each month due to fever 😒, very exhausted and painful watching the nurse put in her IV every time. Wishing your baby a good recovery!

[MichelleCLDF Partner CLDF]

I'm so sorry you are feeling worried. I am the Children and Families officer at CLDF. We can offer you some direct support and advice if you would like to contact us. Please can you fill in this contact form and I will be in touch with you shortly. Best wishes, Kate

childliverdisease.org/conta...

[Thomas2]

My son underwent Kasai at Rela hospital, Chennai,they told enzyme level will come to normal after 1year.... bilirubin level is important....

[manhealth in reply to Thomas2]

Glad to hear.. I also wanted to do in Rela, But due to logistics issue and as the kid was very sick, had to do kasai in Bangalore. Hope your son is doing good now

[srajeshwari53 in reply to manhealth]

Helo

[srajeshwari53 in reply to srajeshwari53]

Where are u from

[manhealth]

Yes, My Son undergone Kasai at his 81days and direct bili came down from 13 to 5.5 in 6weeks. But liver enzymes are fluctuating.. GGT is 2000+. Hope your son is good now..