Friday, 8 March 2013

Skin-picking in our kids & adults with PWS

Recently, our FamCare Advisory Board published an article on skin-picking in PWS.  There are many, many resources on the internet about this characteristic and most are written by medical professionals.  At FamCare, we mix both medical advice with parent-to-parent advice.  You can see the article here

Keeping hands busy is the best remedy!
Some people pick more than others.  There is some evidence that concludes people with the Deletion diagnosis pick more than those with the Maternal Disomy, although this isn't set in concrete and there are always exceptions to the rule.  We know that a high pain thresh-hold is something that our kids and adults also have, and that self-inflicted pain will often produce endorphin hormones which can make a person feel good.  There's a lot of evidence to suggest that heightened anxiety and nervousness will lead to picking - and this is actually quite common in the general population.

There have been many research studies done on skin-picking and many of us parents have wished for nothing more than a solution to this somewhat gross habit.  I have always thought that one of the best ways of understanding a person with PWS is to try to get inside their head and think the way that they think.  Therefore, I often ask my daughter the reasons behind a particular behaviour (especially if it's been challenging).  Sometimes there is a real insight - and, of course, sometimes there is not!

With this in mind, I came across an article entitled Individuals with PWS and their Perceptions of Skin-Picking Behaviour (see it here) and thought it would make interesting reading for all of us in our attempt to understand what drives our kids to skin-pick.  Here are some of the reasons, as told by the person:

“I scratch when it itches. Yes, then I scratch open my skin, I know that this is not a good thing to do, but I cannot help picking my skin. It starts to itch and then I start to scratch and pick my skin.”

“This behaviour belongs to my PraderWilli syndrome, it will not disappear. It has something to do with the syndrome, they cannot point that out to me.”

The next comment came from a young man who grieved the loss of his father:
“Yes, normally, yes, I have no father anymore… I often see my father standing in my bedroom, then I feel very nervous and stressed. Then I start picking at my skin…It’s just nerves.”
After a hospital visit...
“When the doctor used a thick needle for taking blood samples. At first I did not scratch open the wound, but later it started to itch and then I scratched it open and a crust appeared. But as soon as the crust starts itching I remove it and also scratch the wound until it begins to bleed.”

“When I have nothing to do, I start scratching and picking at my skin. Then I am feeling bored to death. I sit and watch and 
am not busy with my hands. Then I start to 

scratch at my skin.”

Many people are convinced that there is no remedy or treatment for their skin-picking.  Some blame it on the syndrome; but there are others who can recite several factors that could reduce or prevent picking, such as cutting nails very short, keeping busy, or being rewarded for not picking.  One said...

“I never scratch and pick at my skin when I am smoking in front of the television. Then I am doing something, I hold a cigarette and cannot scratch or pick at my skin.”

What do they actually think about their behaviour?  Some answers...
“I feel bad about doing it. Sometimes I think that the behaviour is really deep inside me. I feel very guilty each time I have skinpicked.”
 “When I am upstairs and I have scratched or picked at my skin, I ask my caregiver how I can make amends to him for this, how I can be of assistance to him, or whether I can buy something for him. I cannot help my skinpicking, but I want to amend to other people for my skin-picking.

It is interesting to see that many have a real understanding of the syndrome:

“I think that other people do not understand Prader-Willi syndrome! They do not know what it is! They do not understand that some behaviours [skin-picking] belong to the syndrome!”

Some like to talk about their skin-picking, others don't.  Some feel relief after they've picked, saying that the itch had now gone.  My own daughter will NOT leave a pimple alone, nor will she stop trying to get a stray hair off her chin.  It doesn't matter what I might say or suggest as a remedy, she seems to have to do it herself in her own way, regardless of the outcome or how it looks.

Have a look at what other parents say in our FamCare article.  You may have remedies that are not on the list - if so, please share with us!
The busier, the better!