Wednesday, 4 January 2012


Shower time for my daughter ended in tears in the other night. Mainly from her, but some from me, too.

The household was lightly frazzled by evening, anyway, after some Olympic niggling between the kids.

My patience was gossamer thin by the time I tried to get my girl into the shower cubicle, to set about washing her hair.

But she wouldn't step in. And she wouldn't stop scratching.

People with Prader-Willi Syndrome can have a tendency to skin pick. I'm not just talking about the urge you have to pick at a scab once or twice before you force yourself to leave it alone. I mean doing it repeatedly, enough to cause infection and even scarring.

With my daughter, it manifests itself in the form of scratching. She often ends up with a sore-looking neck or arm after sitting and repeatedly scratching an itch. We put E45 cream in her back at night to ease her urge to scratch along the length of her spinal fusion scar (or at least the bits she can reach).

On this occasion, it was defiant. I told her to get in the shower and stop scratching her tummy, which had lots of red marks on it. But for some reason, this turned out to be one of those rare occasions when my daughter decides out of the blue to be rebellious. She looked me straight in the eyes, planted both hands on her stomach, and started scratching even more furiously, her skin turning an angry red.

I tried to grab her hands but she increased the speed, her nails digging in and even causing a couple of pin- prick-sized spots of blood to appear.

There followed a short battle, where I had to resort to the underhand tactic of bundling her in the shower cubicle and deliberately aiming the nozzle so the water flowed over her face and into her eyes (which she hates).

It broke the spell. The scratching frenzy finished.

She was struck with the guilt that always hits her after a display of odd behaviour. Floods of tears ensued.

A cuddle on the sofa , a light hot chocolate, numerous sorrys from her for ignoring me and several sorrys from me for shouting, and it was all over, as quickly as it had begun.

Video is Morphine - Scratch


  1. Hello,
    I think that the more emotional you reply to her scratching, the worse.
    I understand that easier said than done. But the more you respond emotionally, the more she will do it. A vicious circle.

    I believe that the best you can do is when she does it, ignore it. If you need to put on some cream or to make any care of the sore, do it without showing that you are angry (the cool cucumber).
    The more you are showing a cool cucumber face (easier said than done, that's for sure), the quickest it will stop this unpleasant (and potentially dangerous) behaviour.
    The more you are emotional when dealing with it, the more she will do it.

    About the shower, have you thought about asking which type of soap she likes ?
    If her skin is dry, avoid soap and prefer syndet, preferably a greasy syndet (syndet with some fat inside, which is even more gentle than syndet).
    Does she like a cream like Nivea on her body ?
    She can also have an itchy skin "only" because her skin is too dry. Even persons without PWS can feel this urge to scratch, stress increases this urge to scratch (to me, it can lead to bleeding and no, I don't suffer from PWS).

    Maybe you can go to the chemist with your daughter and ask her to choose a syndet and a cream.
    As she participates more (and at 13 years old, it's normal that a person wants to choose if she prefers to get a soap or a syndet) while choosing her products, she could stop defying you when it's time for shower.
    You can even put the syndet in a recipient in a shape she likes : if she likes cats for example, you can put the syndet in a bottle which has a shape of cat.
    It can be the ideal step to let her have more responsibilities for her personal care : she can choose her personal toothpaste and an electrical toothbrush if she wants to.
    About washing her face morning and evening, don't appeal yourself to "special products for young people" if she has acne (not sure she has, but it's still a good point to remind) : skin with acne is still fragile, so stay away from very alcaline and aggressive products, which are not improving but making acne worse.

    Take care

  2. Thanks Giulia, that's some great advice. I'm aware of the vicious circle and usually manage to step out of it and keep calm. But on occasions I fail, and feel guilty afterwards, because I know I could have handled it better.
    I'll check out what you say about syndet. She chooses her own toothpaste, and cleans her teeth brilliantly by herself with an electric toothbrush, so I'm sure she would like to choose her own bottle for the syndet.
    Thanks again for the advice.

  3. Syndet is a synthetic detergent : it's a soap without soap. Dove is a good brand of syndet that you can find at supermarket, I advised the chemist because she won't be tempted with food. But if she can handle the supermarket, go for it :D
    And let her choose also a cream for her body, provided that the cream is very oily : when her skin itches, the more oily the cream is, the better. It's the oil which keeps the water in the skin, a bit like the lid on the pan when you cook. Nivea is a good one, but you have others too.
    It also helps healing the picking : in those days, they put on fatty stuff like almond oil on the skin to make it heal better.

    Exactly like she starts to choose her clothes (I think that she chooses her clothes at 13 years old, even with your supervision), she can also like to choose with which kind of products she washes herself :)