Skin-picking

There's a proper name for skin-picking - it's known as "dermatillomania" or neurotic excoriation and it happens not just in Prader-Willi syndrome.  Many people pick at their skin, even absent-mindedly, scratching at some irritation, chewing the corner of their nails, picking the edges of a scab; it's a common thing and we've all done it.  But it's when it becomes more habitual, more obsessive, more compulsive then we should start to worry.  And, yes, there's another proper name for it when it starts to be repetitive, they call it "Body-Focused Repetitive Behaviour (BRFB) and it also includes pulling or plucking hair or nails and becomes even more serious when it starts to cause scarring which interfers with the person's social life, every-day life, and personality.

*Skin picking or scratching is a common behaviour seen in people with Prader-Willi Syndrome (PWS). The intensity and duration of this behaviour varies from person to person and episode to episode. It may occur in the form of scratching an insect bite until it bleeds and becomes an infected sore or it may manifest in the form of nose picking or anal picking. When this behaviour continues for a prolonged period it can cause unsightly and distressing open wounds. 75% of the people surveyed by FamCare reported skin picking in their relative with PWS. A USA study reported anal picking in 9.5 % of people who skin picked.

Most people use their fingers to pick at their skin. Some, however, will use tools or objects, such as tweezers, fingernail clippers, or pins. These sharp, pointed objects can quickly do significant damage to the skin, often resulting in frequent bleeding and lasting scars.

My daughter went through a time of great stress for her and she used a needle to damage her skin. She pushed the needle in so far that it required surgery to remove it. She came through the surgery like an angry cat - hissing, spitting, and wanting to escape. More than that, she wanted food and absolutely no-one was going to get in her way! The nursing staff had to call for help to manage her. It was one of her worst times.  Now, this is in the line more of self-harming, but it's the same kind of thing in that she couldn't stop herself.

Why do people with PWS skin pick? The behaviour is thought to start in response to boredom, stress and anxiety or as a form of self-stimulation. And, these too, are reasons in the general population, along with a feeling of loss or self-loathing.  There is also a more psychological reason of being able to "own" something that is yours.  These are issues that we, as parents, should be closely aware of and be able to identify what is upsetting or worrying our kids.  It is also known that people with PWS have a high pain threshold and do not feel pain so intensely. This, of course, is not necessarily the same for each person, but quite often there seems to be a higher pain threshold than you might otherwise think.

Once commenced it is difficult for the person with PWS to cease without some form of external intervention, as they become “stuck” in the behaviour. And this is an interesting point, becoming "stuck" in behaviours.

With my daughter there is a "point of no return"; she has reached a peak in an outburst from which there is no rescuing, no sensible discussion, and no point in trying.  She is totally stuck.

Think of other behaviours in PWS - eating being the major one.  If the situation is not controlled, once they start, there is no going back and, given the chance, they may eat themselves to the point of danger.  And there are the repetitive behaviours that go on and on, whether it's questioning a situation, asking when this, or that, is going to happen, and who, or what is going to happen next, it's all bound up with anxiety.  Anxiety that they will not be fed again; anxiety of what might happen will be something they can't control.  And so on.

Our Famcare article on skin-picking says this: "If the underlying cause of the skin picking can be identified, especially where stress or anxiety is thought to be a contributing factor, the ideal would be to investigate and discuss what is causing the stress for the person with PWS. If the stress can be removed or decreased, the skin picking should also reduce. Remember, however, that the picking may continue as it may have built up to a repetitive behaviour which will take longer to stop."

In my daughter's case stress from a very ignorant neighbour and her children who teased and tormented, led to a lot of self-harming  Of course, it was exacerbated by her retaliation and the only way to permanently avoid this stress was for my daughter to move house.  Extreme, yes, but it worked.

So, what works to avoid skin picking?  Assuming we have eliminated any anxiety around immediate issues and that the skin-picking seems to have turned into repetitive behaviour, there are simple and practical strategies that help to minimise the severity and frequency of skin picking. These include:

• routine cutting of finger nails on a weekly basis
•  daily use of moisturiser for fingers, hands and arms  -  it is best if the moisturiser is applied by the person with PWS, but supervised to avoid the "more is better" trap!
•  positive reinforcement for “healthy, good-looking skin”
•  keeping hands occupied –  using a “word-find” or puzzle book, computerised game use, object kneading –  eg soft ball, worry beads, hand-craft – such as knitting, crocheting, beading, unravelling knitting and re-winding
•  daily sensory stimulation of the hands and arms – eg massage
•  maintaining a PWS appropriate and calm environment 
•  brushing hair daily for a number of strokes, counted – say, up to 50, encourages the growth of “beautiful, shiny hair” when the habit of pulling hair out, is a problem.
•  tell the person how wonderful their “unpicked” skin is
•  tell the person you want to help their sore to heal
•  give  verbal praise for periods of time spent not picking
•  offer the person a reward (not food) for time spent not picking – this can be for  a few hours or lengthened to days or at the end of a week for 7 days of no picking. Drawing up a contract involving “periods of non picking” often works well. 
•  If anal picking is a problem rolling balls of toilet paper while sitting on the toilet may keep hands occupied;  try not to focus on or talk about the skin picking 
•  using distracting calming strategies and verbal re-directive strategies eg, asking the person to tell you about something that interests them
•  dress any picked sores with antiseptic cream if necessary and cover the picked area with a gauze dressing and bandage to prevent access to the area or try using a strong solution of salt and warm water to bathe picked areas 
•  maintain supervision of the person if they are only picking in secret  – but night-times are difficult
•  an Aloe Vera based cream works very well on the sores
•  in severe cases medication (only prescribed by a doctor) may be beneficial –  eg Topiramate, topical Bactroban, ReVia (naltrexone hydrochloride).  All medications must be monitored by a doctor to prevent any reactions within the person with PWS

Skin picking does not occur all the time.  Prevention is always the better option, however, techniques used to avoid skin picking need to practised regularly – as with all PWS management.

Finally, I have always found that it's better not to make a fuss about it, but include a skin-care routine into your son or daughter's daily life using praise when healing takes place and picking lessens, and not commenting when it has built up but first and foremost look for any anxiety-related issue, then progress with the healing using as many strategies as it takes.

(Linda Thornton)



* Famcare is a project of IPWSO.   Main Office: c/o B.I.R.D. Europe Foundation Onlus Via Bartolomeo Bizio, 1 – 36023 Costozza (VI) – Italy – tel/fax  +39 0444 555557 email: information@ipwso.org  www.ipwso.org