PFIC type 1

[SGJ2013]

Hi there, my name is Stephanie and my son has been diagnosed with pfic type 1. He is only 15months. I was just wondering if any one else has pfic and any advice/information on prognosis . His itching had got really bad now and not much seems to help.

[Twick]

Hi, our son has a different condition but we have bought him some 'scratchsleeves' that look like a shrug (I am told) that cover his arms and go around his back. The hand pads are silky so if he does scratch it doesn't hurt. We also use a lot of e45 and similar. Hope you are okay

[SGJ2013 in reply to Twick]

Hi, thank you for your reply and advice. I will look into them. I always have to keep long sleeve tops, trousers and socks on him. No shorts or short sleeves ever!! I get a cream from doctor called dermacool it has menthol in it, you should try it. What age is your son?

[Twick]

Hi, he is just over one now. He has alagille syndrome. We can never put him in short sleeves or shorts for bed as whenever his skin is exposed he scratches himself. It must be so uncomfortable for them. I have not heard if dermacool previously so thank you for that tip!

[SGJ2013 in reply to Twick]

I know it is so frustrating that we can not do that much to help, is itching the main thing with your son? Does he eat,sleep okay? How's his weight gain, my son isn't gaining weight just now hasn't put on weight since he was around 10/11 months which is hard.

[Twick]

Hi, sorry for the delay in my reply. The itching isn't always so bad that it keeps him awake and we also have anti histamine medicine which we use occasionally. His weight gain is slow and he is below the 0.4 percentile. His weight stayed roughly the same for about a month or two last year no matter what we fed him. He is gaining weight now but again very slowly. It is so upsetting. His sleeping has got better so there is hope!

[Gemob]

Hi my little girl also has PFIC. Her itching is out of control. We havent really been told much about prognosis at the moment her liver is OK. She is on lots of vitamins as Im sure your little boy is too. What meds have they tried for itching as there are quite a few that can e tried. My little girl also struggles to gain weight that was one of the first signs there was something wrong with her, She seems to have a good spell where she gains it then stops fo a couple of months, It can be frustrating cant it

[Pfic1_mum]

Hi my son also has pfic 1, his itch is extreme and keeps him awake, he also digs at his eyes and ears until they bleed, I found that bathing him in pure goats milk warmed in the microwave, followed by flack seed oil all over the body, ( it does smell bad) then pay dry follow with a really good vitamin e cream/oil and then clothed, this leaves the skin super moisturised. And it should help the itch it last for around 4 hours with my son. Also if you can find a herbalist shop ask for som chickweed cream it's great for itch this is a black charcoal type cream but really does work! I follow this with a vit E cream on top. I hope this helps as I to have tried everything! X

[Hidden]

I am just reading this post. How is your son doing? and old is he now?

[SGJ2013 in reply to Hidden]

Hi, my son is 3. We have been down at Leeds last week for a liver biopsy as he will be having an internal Diversion to try help his itch.

[Gemob]

Hi how is your son doing? Did he have the diversion?