Allagille syndrome

[Zuhal]

My son is 3,5 months diagnose with this waiting for final confirmation in a way I am relieved that I know what it is it was really hard times to wait without knowing anything so I would love to hear your story and share the experience as I don't know what to do from now on about the feeding especially itching and future etc

[Dina1986]

Have you already started giving him vitamins? We are on Urso for some months, it seems to help with her itch a bit, but she scratches her ears anyway, especially when tired. Try to keep his nails short and skin well moisturized. Feeding one of the worst parts, because they are very fussy about foods and don't have great appetite, we are on special formula and solids, started solids at 4,5 months old. She doesn't put much weight on at all, especially now with crawling ...dietitian advised to add extra scoop of formula into her drink and also keep high protein diet , meat, chicken etc ...

[Zuhal in reply to Dina1986]

Hi sorry for late reply as I was busy with appointments of him and also very tired anyway we've started vitamins since he was a month old as well as urso he is also itching ears and nose but not too much that I need to use something he also take phenobarbital at night that also helps itching he is going to be 4 months tomorrow and also start solids food after a week his weight is ok not too well or bad just somewhere in the middle for now generally he is a happy baby that's the main thing I remember my daughter now is 4 but when she was a baby she was always behind more than a kilogram and she was perfectly fine even though she didn't have any problems so I don't worry to much as long as he is doing ok health wise our dietitian said start with baby rice and porridge at the beginning then slowly slowly add pure vegetables pure fruit homemade yoghurt on his diet and then will see

How old is you little one and what is the weigh you worry about?

I spoke to one of the professor from turkey to get different opinion about allagille syndrome and she said don't worry too much he is going to have normal life just he is going to take his medications and especially vitamins regularly this is important she said then that's it so I am a bit relieved now so good luck and keeping touch xx

[Dina1986 in reply to Zuhal]

My Lil one is very petite , only about 6 kg at 7 months. But she is happy , its the main thing ..

Well, alagille syndrome is very variable and some can have normal life , I think just small group need a liver transplant . The worst thing you cant know how disease can manifest and when , so its like walking on the edge...

You are lucky to have another healthy kid, its my first baby , so I was terrified of course . So hard to manage on my own but I am getting used to it ...

[Zuhal in reply to Dina1986]

I imagine how hard without help especially emotionally but we are strong women and in a way we are not alone as god is always with us

Don't think about disease because even we don't have any disease in ourselves we still don't know what will happen to us tomorrow so live today like there's no tomorrow enjoy the time with her right now saying that I had my ups and downs at the beginning crying all the time thinking the worst but now I say I feel much more better as I know what it is and what to expect etc plus everyday I drink camomile tea and Melissa tea to make myself calm also I will do counselling start next week

Why don't you try something for yourself? We also have to healthy especially mentally in order to help our children xx

[Dina1986 in reply to Zuhal]

I do some sport and will probably go to uni next year, life continues and important to live it happily, so it's all good, just a bumpy start. At least we know what to expect...my mum comes to visit us in Australia next week, can't wait, will finally have sometime for myself ...xx

[Zuhal in reply to Dina1986]

Great that your mum is coming my mum is here in England and it's luxury to have her she looks after him at nights so i can sleep xx

[Dina1986 in reply to Zuhal]

Priceless

[Dina1986 in reply to Zuhal]

And yes ! We definitely should keep In touch and share experience about feeding, drugs etc .. Support is very important in this sort of things !

Xx

[Hidden]

Hi Zuhal, please go to the children's Liver Disease Foundation if you would like information and support, you can find us at@ childliverdisease.org/ best wishes - Jacquie

[Zuhal in reply to Hidden]

Hi thank you

I've already made monthly donation