Alagille syndrome

My son is 15 weeks old and has recently been diagnosed with Alagille syndrome. Over the last couple of weeks he has started itching his eyes and face. I'm not sure he can co-ordinate his hand to the rest of his body yet. How old were other children when they started itching and is there anything including medication people have found to lessen the itching symptoms?

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  • Hi, my son started showing signs of itch at 3 months. I kept his nails short and filed smooth to minimise damage to the skin from scratching, when he was awake he could be distracted but when he slept I put scratch mitts on his hands, and when he outgrew them, socks. There is a product called scratchsleeves now that does the same job. My son was worse when he got hot so I tried to keep him cool and he always had a fan on in his bedroom. Moisturising doesn't stop itch but it can help keep the skin from being damaged, some people have got eczema​ cream from their doctor, others recommend Dream Cream from Lush or Aveeno which contains oats. There are several different medications that can be given to help and it's best to ask your liver specialist about them.

    Jo

  • Our daughter started scratching at a couple of months old & like Consmum, we used scratch mitts to begin with & then baby socks (the best ones we found were from H&M & had gentle elastic around the ankle, wrists for use as gloves, which helped keep them on her hands). We always dressed her in night clothes made of 100% cotton to avoid sweating & because it was less irritating for the skin.

    Creams helped in terms of distracting & could be soothing in the night. We used essential oils too (lavender oil as a massage oil) as she got older & her sleep became more broken from the itching. And, as ConsMum says, the creams can help to condition the skin. We were eventually referred to a dermatologist when our daughter was 8 & I just wish we'd been referred so much earlier. Things like dermol lotion for use as a shower gel, instead of mild soap, helps to keep her skin moist.

    Increasing the Ursodeoxycholic Acid (we call it Urso) which your son will likely be on, in line with his weight, will help flush the bile salts through his liver & out & it's the bile salts in his blood which cause the itch. But, increasing the Urso can also cause looser stools. You'll learn all of this from your liver specialists as you go. There are other meds that's you'll be introduced to which are specific for the itching - Rifampicin, Allimemazine. Thee was also an awful powder (I can't remember the name of it) which was dissolved in fluid (we used fresh orange juice as it disguised the flavour a little). All of these work differently on different children of course & some are only for older kiddies.

    Our daught suffers less from her itching now although we notice it gets worse when she's hot, stressed or tired.

    Best wishes,

    Claire

  • Great advice from two mums. We have a leaflet on itching which may help, here is a link to it childliverdisease.org/Infor... you just need to go to the Pururitus leaflet and download it. I hope it helps - Jacquie, Families Officer CLDF

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