Itching

[TammyC123]

Has Anyone any suggestions of how to give baby colestyramine sachets tried mixing with water last night he would only take a few sips am I able to mix it with something instead? It only says on packet about mixing with water of fruit juice. Hes 10 months and is itching quit bad its making him so uncomfortable even sleeping now and hoping tbis helps. Thanks

[Stacian]

Hi tammy

My daughter has PFIC and her main symptom. Is itching and it is hurrendous. I have been unsuccessful at getting her to take cholestyramine long term but when she was your sons age I gave it to her mixed with fruit smoothie. The cholestyramine has an orange tang to it so always worked best with something that has orange in it.. Orange and mango was OK... My daughter is nearly 3 now and will not take it at all... Hope this helps xx

[TammyC123 in reply to Stacian]

I'll try a smoothie today as mixing it with water and orange diluted isn't working he seems to be gagging taking it. During the day we can keep him occupied, however come night my hearts broke seeing him pull even in his sleep even hands and feet hoping to get him to take this to see it helps.

Thank you x

[Hidden]

Hi Tammy

I hope that works for you, poor little thing, it is so difficult and you feel helpless. We have a leaflet on pruritus which you can download or we can post out to you. Also have you been on CLDF Facebook and asked parents how they manage the itch.

childliverdisease.org/Infor...

I hope this helps

Regards - Jacquie CLDF

[Stacian]

Hi tammy

How did u get on with the smoothie. I really feel for you it is heartbreaking to see them suffering so much. My daughter is the same and I am sad to say that nothing really helps..as you know bed time is the worst and my daughter doesn't really sleep. I'm not sure what medication your son is already taking but alimemazine and Piriton take the edge off at Bedtime.

I am so sorry If this isn't very helpful or reassuring for you. Feel free to message anytime xx

[TammyC123 in reply to Stacian]

Hey stacian he won't take it at all tried him a few times. He takes alimenasinr and vallergan we have an appointment tomorrow with his consultant in royal children's so hoping to get some advice as he just seems to be getting worse each day we have ended up going to a and e over the weekend as he is kicking his feet together than much he has tipped skin off causing an infection just feel so helpless for him xx

[Stacian]

Aw hun I am so sorry, it is awful and so cruel and unfortunately there is nothing that really stops it.. I know my daughter is the same and it's just getting worseshe had a PEBD which I had heard was very successful and unfortunately it didn't work for her...a medication called refampicin worked really well for a short period. And definitely ask about Piriton it helps molly to settle and sleep as it makes them drowsy. Make sure you keep onto the Dr's about how bad the itching is... And a little tip that may help to support you.. we have kept itch charts on molly since her itching got worse because sometimes they made me feel as though I was exaggerating. Maybe I was being sensitive but they definitely started to listen when I had proof of how bad it was. Also has anyone given you any advice on little things you can do to 'help' the itching.

Im sorry if I have been too intrusive but itching has been molly's main symptom and it devastates me so I know what your going through. But if you want to chat or ask anything I am very happy to help, even if it's just some. Little tips we have picked up over the years... Stay strong

Stacey xxx

[Dina1986]

My daughter is almost a year and she has alagille syndrome, we started on questran when she was 6 months, it did help with itch but she got the worst constipation ever and i decided to stop because itching was quite bearable, doctors told us to dissolve one sachet in 100 Mls of water and give twenty five Mls four times a day ONE HOUR before other medication ) I used to use bid 20 Mls syringe and managed to give her 2-3 times a day, because 4 times was way too much, by squeezing it in her mouth,....anyway i am thinking about start giving it again because she is itching again and especially at night time...