Alagille Syndrome

[Cesarjr2018]

My son has been officially diagnosed with Alagille Syndrome he has liver, heart, facial, and eye findings am so scared he’ll be a severe case he’s only three months old! Can anyone please share there experience with me for educational and motivational purposes! He’s my first child and has been the toughest battle to face!

[LizHawes]

Hi, my son is now 19 months. He was diagnosed with ALGS very early on ( had liver biopsy at 3.5 weeks)

He was put onto a liver formula and supported with his fat soluble vitamins and Urso.

I found the 6 month mark tough as his itch became much more noticeable and it was starting to affect his sleep. Thankfully he started Rifampicin and that settled it down.

Weaning was tough and he is a very fussy eater.

However he is 19 months now and doing really well, he is walking and talking and gaining weight weekly.

It's a rollercoaster, some days are easier than others, but looking at how well he is now it has definitely got easier.

I remember how overwhelming it was when the official diagnosis was made.

He is our only child too and I have now been told I too have ALGS.

please ask anymore questions if you have any.

We are under Kings and have been supported by the fantastic CNS's and Dieticians.

[Cesarjr2018]

Thank you so much! We still don’t know who carries it but we were told to get tested! Its all so scary to know that every baby has a different trajectory but I hope my sons could be easy! I really get scared to the thought of seeing him uncomfortable and hurting

[Lois-Cldf Partner]

Hi my name is Lois and I am the children and families officer at the childrens liver disease foundation, can I ask if you live in the UK?

[Cesarjr2018]

I don’t actually!

[Dina1986 in reply to Cesarjr2018]

Where are you from?

[Lois-Cldf Partner in reply to Cesarjr2018]

you can get some information on our website

childliverdisease.org

all our leaflets are downloadable but bear in mind some of the information might not be relevant because of where you live. There will be information that will support you.

[Cesarjr2018 in reply to Lois-Cldf]

Thank you very much!

[Cesarjr2018]

I am from New Mexico