2.5 year old with Alagille syndrome

Hi. My daughter has this condition and is doing well but was wondering if anyone else who has this condition could answer a few questions. She was born with high muscle tone. Now she is walking and running around the place but her balance is poor and she falls over constantly. Will this improve as she gets older or is it always a problem?

She is also very very pale with no colour in her face and her vains are visible around her eyes? Again is this part of the condition and does that change with age.

Finally when doctors say she will be small when fully grown. How small is small?

6 Replies

  • Hi

    Our daughter has Alagille syndrome, and had a transplant as a baby. She is now 14 and is generally very fit and well, but has always been small (below the 0.4 centile). She has done a course of growth hormone treatment with the aim of maximising her growth - this doesn't seem to have had much impact, and she is likely to end up around 145cm. We were aware that children with Alagille tend to be small, but there are other factors too, including parental height, and we aren't a tall family! The main thing is she is healthy and happy. I hope your daughter does well.

  • Thanks Ali1 for your reply. Good to hear from other parents with kids who have this syndrome as I find it hard to get answers from doctors. My daughters liver function is slightly out but giving her no problems at present but unfortunately both her kidneys are not developing normally and she will need a transplant probably in her teens. Right now it is a nightmare to try and feed her as she will eat so little and is below the 2nd centile. Find it hard at times as she is so pale and sick looking but generally health at present. Its good to hear your daughter is doing well after her transplant and thanks again for replying. Need to start focusing on the positives and hopefully all will go well in the future.

  • I am not sure about the balance issues have you had her eyes tested. My son is 22yrs he wears glasses.They always said he would be small about 5ft 6 he was small until he was about 17 he is now over 6ft so they are not always accurate. I think it's helped that both my husband and I are tall.

  • Thanks Susie-Lou for your reply. Never taught about it being an eye issue with her balance. Have tried a few times to get her eyes tested but she will not co-operate so they can't get a good look at them but from what they could see there didn't appear to be any problems. Will have to leave it until she is a bit older. My husband and I are average height so hopefully she will reach that. I know its not a big deal but just curious. How is your son doing? Any health problems as an adult? Good to hear from other parents who's kids have this condition.

  • My son is very well. He has yr check ups. Difficulties arise with age re drinking etc. but so far so good.

  • OK, that makes sense. No guarantees with any condition you might have. Best of Luck to your son. Take care.

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