Allagille syndrome

[Zuhal]

My son is 5 months now and diagnosed with allagille in his case liver has been affected but so far thank god he is doing ok hopefully it will stay like this

We talk about allagille with the specialist and he said as there is no cure for this we just keep an eye on him and see how he goes especially growing&itching wise because these are the main problems they also can’t say certain things for the future it’s like wait and see sort of but the worst scenario is transplant in the mean time he will take his medications and nutrition

Children with allagille are not great eaters I guess we need to find a way to increase the nutrition any advice will be taken gratefully so there is not much to do right now time will guide us eventually

He is a happy baby this is only what I care and as long as he is with us I don’t care about anything else

Believing in god is the only thing we have we trust him unconditionally

[Dina1986]

Hi,

So sorry to hear about diagnosis, I know how you feel now, but remember as you told me alagille is the best from the worst, and even our liver specialist told us the same, first year is probably the hardest one, because you don't really know what to do and don't know much about diagnosis but then after a year many kids just get better, I agree that growing problems and itching can be hard to deal with, but they eventually grow anyway, slowly, at their own pace, itching can be challenging but if doesn't have it now no reason to think about what will be in future ! As soon as he is happy and smiling its all good. My daughter is very petite as I told before and even we try to give her as much food as she can eat, and she likes food, she doesn't put much weight on anyway. I think the best is to keep them on special formula as long as possible and give lots of protein food, add oils and cream into food. Also we try to give her porridge as it has many calories in it, mix it with banana or avocado, add formula in it...literally add formula everywhere, in to pures you make, cereals and etc. Make formula with extra one scoop as dietician advised us to do. It won't taste good but he will get used to it, they drink it anyway when thirsty.

Everything is going to be ok, it will get easier I have hope for it. Remember "Diagnosis can define many things but it doesn't define love" Love is a cure for everything, this is all we can do ... ♥💋

Xx