Is anyone familiar with the diagnosis... - Children's Liver ...
Is anyone familiar with the diagnosis Alagille Syndrome and what affect does it have long term?
Hello
I have A.S. I am now 44. To cut a long story short. I have been physically disabled by it, including suffering speech difficulties. A.S. comes in many forms and varieties. Mild to severe.
how old was u when you got diagnosed,my little boys 6 mnths we been told he has it due to his liver
I was well in to my adult hood before they knew it was AG. At the age of 10 I was diagnosed with vitamin E deficiency and so was put on high doses of it daly. I also have tunnel vision due to my liver's inability to feed my body appropriately causing me malnutrition. I have not got any worse. I was able bodied till around the ges 6/7.
There's a lunch time session at CLDF's National Conference on Saturday on Alagille Syndrome - meet the expert. Could be interesting.
I attended the lunch time session on Saturday. It was interesting to discover that most allagilles children have poor appitites and eat very plainly - I thought it was just my daughter!! I spoke to Dr Alistair Baker from Kings College Hospital and asked what the latest news about medication was, as so far we have not found any medicine that has a lasting effect. He mentioned a new drug that will be starting a trial in about 3 months which is known to be safe and should prevent bile salts getting into the blood and causing the horrible itch. I think I have understood that correctly. Anyway keen to find out more about the trail so will be contacting BCH soon!
is the drug which Dr alistair Baker has mentioned is available,how is your daughter doing as even i have my son 14months old suffering with Alagile syndrome,finding it across all medication to make him comfortable and live normal
Thank you for your post. The link below contains information on Alagille syndrome in accordance with standard UK health regulations and treatments. We hope that you find this helpful. childliverdisease.org/Infor...
Hi. My daughter is OK, still itching, slow growth and underweight but a happy little sole. She is behind at school and seems to struggle to take in and retain information and pay attention during lessons. She is now 7 and I thought it was because she was always tired but now I'm not so sure and wonder if there is more to it. Maybe she has some sort of learning difficulty? We are on the list to be part of the trail for the new medication that Dr Baker first told us about over a year ago but so far not heard anything. Just doing our best to carry on as normally as possible.
H wud be great if u can help with some good itching medicine to get him sleep normally on nght, in day his itching is very low in nght something inside seems to be a worry...everynght his itching over the body gets increased, though as suggested by dr we are feeding him wth chloroton half sachet initially this worked smoothly now seems medicine stopped working, how is ur daughter sleep in night,does she sleeping well, are u applying in cream to reduce itching..basis dr advice we are applying cocunut oil all over the body twice, pls advice incase u have some better remedies to help.thax
Venu,my son 2yrs,was diagnosed with AS by 10months.itching worsened when he was 18months old.we had done PEBD in his 11month,but did not work for him.in June 2013 we did a transplant as itching did not come down,then they said it was PFIC1.come to Chennai global hospital,they e experts in liver conditions
My son was diagnose with AS when he was 5 months. On a lot of medication would like to meet parents in same shoes as me would like discuss share information hope to hear from u soon.
Hi. My daughter is 6 and we have tried all the medicines available with mixed results. Apparently everyone is different and what works for some does not work for others. Happy to give you list of what we have tried as it might help you know what is available and what to ask about at your next appointment. We have been offered a partial external biliary diversion but it sounded like an awful procedure (big scar and external bag that needs emptying daily) so we have decided against it for now. I am aware of an internal diversion procedure done in USA which does not need a bag but there is not enough evidence at the moment that this is as good.
I have Alagilles Syndrome. I am now 30. My condition is mild. I don't put on much weight at all. I have 7 stone for a number of years. My parents found out about my condition a few months after I was born.
Hi
Do you suffer with pruritus and if so have you found an effective way to treat it?
Have you had any problems with field of vision and driving?
I wear glasses.
Have you got a driving licence?
Hello Paynie68. By Pruritus, I guess you mean itching. I do still itch a little bit now (mostly only when I'm tired) but not to the extent that I get scabs. When I was younger, my parents tried everything from e45 cream to giving me a bath to bath oils. I did used to take a tablespoon of rifampicin when I was younger. I did help a little. I would also recommend you to put manuka honey on scabs, speeds up recovery of skin.
My son is 13 months he doesn't have a good sleeping he's up every 3 hours itching he also take rifampician 2 times a day I wish there was something to help him with itching ?
my son is 15 months we have spent the last week down at londons kings collage hospital as he was going through a pre liver transplant assessment he also has alagille syndrome very itchy my son is rifampician 4ml per day (no good) alimemazine tartrate 1.7ml at night before bed (very good) didnt sleep much before he got this he now sleeps most the night also takes phenobarbital 14ml per day. the previous medicines are all for his itching.
My Daughter is 17month old and has just been diagnosed with Alagille Syndrome, the itching has just started along with sleepless nights up every 3 hours (which she has done since birth). We are under Kings Collage. Any information/advise people have to help ease the itching would be greatly appreciate, also any advise on what brand nappies to use think they are not helping?
My sincere advice is please visit global hospital once....they are really good especially for liver associated problems.
Hi...my son is nearly 9 and was diagnosed with AS when he was about 2....his itching is really bad and we are currently in the middle of a clinical trial at Kings College Hospital. Its called LUM001, we are in the second stage of the trial and I think he was getting the placebo on the first part.....he is getting the actual medicine now but we are only in week 2 and its supposed to take 3 weeks to notice a change....fingers crossed....He is also taking rifampicin and ursodeoxycholic acid....He is small for his age and is a really fussy eater.....He also has dysplastic kidneys...x
Hi Thomas18, Just saw your post today and noticed that you mentioned dysplastic kidneys. My daughter is nearly 3 with Alagilles and has 2 dysplastic kidneys. She is not on any meds or has any kidney problems at present. Have been told she will need a kidney transplant probably in her teens. Just wondering what you have been told about your sons kidneys and has he any problems with them at present. Apparently its rare with the condition to have 2 dysplastic kidneys.
