My daughter is 4 and just been told she has it
Has anyone got a child with or person... - Children's Liver ...
Has anyone got a child with or personally has alagille syndrome ..would u have any advice plz???
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Lovemybabies2
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Hi, my son is 14 and also has ALGS (Alagille Syndrome). He's under King's College Hospital in London.
Hi my nearly 9 month old son got diagnosed with ALGs at 6 months old. Along with liver disease he has peripheral pulmonary stenosis but his eyes and kidneys are fine. Still quite new to it all so no real advice but just wanted you to know you are not alone xx
My daughter also has pulmonary artery stenosis and loss of hearing in left ear her liver and spleen are enlarged ..her eyes and kidneys are fine as far as i know her doctor is pants i dont get told her blood results just a copy of the letter she sends to annabelles gp and i dont understand it
Hi. My son is nearly 3 and was diagnosed at about 10 weeks. To say it was a shock is an understatement. He is under Kings and St Thomas' for his pulmonary stenosis. The best advice I can give you is not to go on the internet to research it, like we did, there's a lot of scary stuff on there, you are much better asking your consultant any questions you may have. Ian
Hi even my son is now a yr old, he got diagnosed in the 6th month, though I been following up wth dr on regular intervals still cant find the complete solution on cure, he is behaving absolutely like normal kid but his weight is bit low, , nght sleep is almost 3hr due to daily heavy itching. .unable to understand how do I resolve the itching problem,friends incase anyonr has found the solution on itching pls do revert back...also incase ur awarr about some good dr at india-mumbai do let me know.
Hi Lovemybabies2, How is your daughter doing now?
My daughter is ok thank you ...tho i am a little worried and unsure what to do as she has had very pale and soft poo for last few days tummy pains and dark wee ..x
Hi, what hospital is she under? x
Shes under lgi in leeds x
Hi, my daughter was diagnosed at 6 weeks old and is now 6 months. My advise is keep and open positive mind, don't Google stuff to much try everything once if it doesn't work move on. For example she had a reaction to the moisturiser the dr prescribed so tried olive oil to keep skin from drying out which is working. We have gone through 4 different milks to find the best one that suits her. Im also trying Bowen therapy which seems to have a calming effect on her and has improved her sleeping a little. Any way hope you and your little one is coping ok.
Sorry, only just saw your reply, I was going to say I assume Leeds have a clinical nurse specialist that you can contact for advice? That's probably a bit too late now though, sorry! Hope her tummy pains have gone?
