Alagille syndrome

[TammyC123]

Hi my son is 7 months old he was digasoned at 4 months through gene testing he's doing great and we are learning about the condition as we go along although were tryubgg out different medicines atm as he's itching quit bad, feel so helpless for him I try to cover him up as much as possible as bath time and getting him dressed he's so uncomfortable. Any advice from others would be greatly appreciated, hes stopped all vitamins for 3 months now and his levels have stayed th3 same. Many thanks

[Dina1986]

Hi

My daughter is 8 months and was diagnosed this month, she seems to be fine at the moment, but very petite, the size of 4 months old, she is also itchy, scratches her ears and eyes when tired. Her levels still high

We started on questran today, will see how it goes, ask your doctor about it, it can be an option.

[TammyC123 in reply to Dina1986]

People comment on how small my son is however hes weighing 7.66kg and doctors said hes doing great with weight. At the start it was a nightmare finding a milk tho he's took to pepti junior very well. My son is the same his ears bleed sometimes he pulls that much I just always try to keep babygrows with mits on or socks over his hands. We're taking rifadin atm do u find the urfalk helps as he has stopped that also? Yes thank you, we've clinic at the end of the month I will mention it.

[Dina1986 in reply to TammyC123]

I found Ursofalk very helpful, we have it since she was 2,5 months ! Your son is doing amazing with weight, my daughter is just above 6 kg , she isnt great eater, she is still on bottles ( Alfaire is the name of the formula) it doesn't taste good, so she drinks only when very hungry or thirsty, but 150 ml at maximum, often doesn't finish her bottles, she also has some solids, seems to like it, and loves food from the table, bit because of her small size can't eat a lot ) we are still wearing 3-6 size )))

Is your sons bili still elevated ? Or it went down to normal?

[Dina1986]

We live in Australia and so hard to keep them dressed, because its very warm most of the year. And as she gets hot she gets more itchy, best option is to keep them cool and give showers instead of bath...this is what doctors told us to do and also skin must be very well hydrated .

[Dina1986]

Everyone is commenting on my daughter's size too, its a bit annoying, she is very petite too, my husband even answeres to strangers that she is 4 months old, just easier this way sometimes, people dont get anyway...

[Zuhal]

Hi my son will be 5 months next week and he highly has allagille syndrome we will hopefully know next week apart from itching he is doing alright I used different creams but doesn’t seem to work I am going to ask for something else next week

Will let you know

[TammyC123 in reply to Zuhal]

Thanks very much greatly appreciated it's just finding what works for them. As Doctor has said its just a matter of changing back and forth to medicines etc

[CROC]

Try getting referred to a dermatologist. Although you won't stop them from itching by treating the skin, you will need to keep the skin hydrated as Dina says, & as conditioned as possible as this will help the skin to heal better once they've scratched it. My daughter is now 9 & she had terrible itching which got worse towards the age of 6 & has now improved dramatically. In terms of skin treatment, as I say, we can't cure the itching but cooler showers rather than baths & not putting cream on their skin immediately after a bath/shower, as this can keep the heat locked in for longer. Being too warm, stressed & tired seems to make the itching worse.

Re. medicines, Ursodeoxycholic Acid helps to flush the bike salts through the liver which helps to reduce the itching but side effects mean looser stools. Rifampicin (blood coloured) helps reduce itching. Allimemazine, is an anti-histamine but also can make them drowsy. We did use a powder medicine that was mixed with food (yogurt, milkshake, fruit juice) to disguise the bitterness (I can't remember the name of it) but wasn't highly effective.

Clothing - we used 100% cotton where possible. And started using little baby socks as scratch mitts when she started pulling her scratch mitts off. H&M do some socks with soft elastic around where the ankle would be.

Fingers crossed for you that the itching improves. X