Ursodeoxycholic Acid

[sturty999]

Hi all, we had our first visit to Kings with our 2 year old daughter last Friday. She has been suffering with jaundice, itching and upset stomach. She has had a scan which was clear and we are now waiting on more blood results, she has also been booked to have a liver biopsy in a couple of weeks time. In the meantime, she has been prescribed ursodeoxycholic acid to help with the itching and jaundice. Can anyone tell me how quickly this will get into the system to try and calm the itching? She has been on 2.5mg twice a day since Friday evening and we have not really noticed a massive difference. Also, are there any tips for helping her sleep at night? Thanks, Andy.

[McSousa]

Hello Andy. Sorry to hear about your little girl's problems. My son, now four and a half, has been a Kings patient since he was a tiny baby and on Urso all that time but has never suffered from itching. I think the meds tend to take a while to work but if I have questions about my boy I phone the Clinical Nurse Specialists who are always so helpful and they can talk to doctors if they don't have the answers to hand.

I do hope the docs can help your daughter soon.

Keep in touch.

Alice

[Paynie68]

Hi

My daughter is 6 and has Alagille Syndrome and has been on Urso since she was about 10 weeks old (same dosage as your daughter). It does seem to take a few days to notice a difference, if any. For her the urso seems to keep the jaundice away but she is still itchy. My daughter has a cocktail of other drugs too as she suffers quite severe itch. To keep her skin nice I regularly use aqueous cream as well moisturised skin seems to itch less. Ensure your daughter sleeps in a cool room and use cotton nightwear. My daughter always wakes in the night and is really itchy so I have spent many hours at night gently scratching her back till she is more or less asleep again. As she has got older I can get away with scratching her less, I think this is because she has learnt to deal with it rather than the itching improving! Something she has been prescribed to help her sleep is Alimemazine, so maybe you could ask the nurses about that.

Hope that helps a bit.

Jackie

[Ebony123]

Hi Andy,

I really hope your daughter is no longer as itchy, but i thought i would reply just in case she is.

My son is 3 and has a rare liver disease called PFIC. He also suffers from severe itching which can be quite distressing. He is on a few medications, including urso, to help with this but unfortunately there is no permanent relief for him at the moment. When he was younger we covered him up completely at night (except his head obviously!) by using sleepsuits designed for eczema sufferers (eczemaclothing.com). These were brilliant for quite a while, but now he is older he can get out of anything and everything and he currently chooses to sleep naked. At least it is as cool as possible! Being cooler does help - in the summer we put a fan in his room. In winter i am careful with the clothes he wears as shops and houses can get quite hot with the heating on. He refuses to wear his school jumper as it is a bit clingy and hot so i put a cotton long sleeved top under his polo shirt. He always wakes many times in the night and we also gently scratch his back to help get him back to sleep as Jackie does with her daughter. We use cream on him every night to help protect his skin, keep his nails short and have recently been told to try using evening primrose oil, from the capsules, on his skin too.

If anyone with an itchy child has any more tips then they would be gracefully received!

Sally

[SGJ2013 in reply to Ebony123]

Hi there, I am new to this and was looking to speak to people who also have pfic, my son is now 15months and has been on a lot of meds since he was 5 months. He has pfic type 1. Do you still attend hosp often with your son? Does he often feel unwell. Any advice would be great. Thanks stephanie

[amjm]

hi my son has had every medicine possible for his itching nothing seems to work he is now due to go on transplant list my little boy has had a hell of a time with the itching his forehead is covered in scars due to the itching we keep his nails short put gloves and socks on his hands but he manages to get them off its not nice to see your little ones go through this .

[Claresmom]

Itching becomes part of you daily life. My daughter had a Kasai at 10 weeks ... She is now21 she is on lots of meds including urso. I have spent her childhood with nights of massaging , stroking and gentle scratching to comfort her as she has tried to sleep. I was desperate to help my distressed baby and even tuurned to aromatherapy to found a way to drive the itching. massaging a toddler 5 - 15 times a day became the norm. I tried essential oils. The most effective oil was recommended by bch... evening primrose oilHer clothes were cotton and her bedding too. There was lots of washing as she used to make herself bleed whilst scratching:(. Keeping her cool definitely helped. She has learnt to blank out her discomfort and leads a full life and is in her final year at uni . Hope this helps cldf and the liver team at bch were always there for me and always willing to answer my questions

Flares mom