Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Thursday, February 23, 2012

Band Aids and Eco Lips to the Rescue

When Prader Willi Syndrome is discussed, most folks immediately think of the uncontrollable food seeking aspects of the disorder.

What is less known about the syndrome, but equally concerning is the obsessive skin picking behavior that also accompanies PWS.

We have been very fortunate. Nicholas is 10-years-old and not food seeking yet. His interest in food has gradually increased over time. At this point, he is interested in knowing when it is time for lunch, dinner or snack but has not started to sneak food. We have locked our pantry where we keep most of our food and snacks. So far, we have not had to lock our refrigerator or remove food from our counter tops.

We are very lucky! I know!

We are ready to become more vigilant about food when necessary.
We hope for the best but prepare ourselves for the worst.

Picking however, is another story.

According to PWS Behavioral experts, Dr Linda Gourash and Dr Janice Forster, this behavior, much like the satiety issues is caused by a failure to inhibit bodily impulses. Areas of concern include:
  • arms, face, scalp
  • lips, nose, nasal septum
  • cuticles
  • toenails, teeth
  • and in severe instances, rectum
No specific treatment has been uniformly effective. Since the activity usually occurs secretly, behavioral interventions are difficult to implement. A basic behavioral treatment principle is that no attention, positive or negative is given to the individual. This helps in preventing escalation of the unwanted behavior. Redirection and involvement in other satisfying activities is helpful.

According to Gourash and Forster, the behavior appears to be "obsessional" but not obsessive-compulsive in nature. Boredom and anxiety are usually the triggers. Medications targeting OCD or anxiety have not been specifically helpful. Although, Topiramate in low doses has been effective for some.

Nicholas has started to pick at his lips and fingers, pulling at his cuticles or tiny pieces of skin, until they start to bleed. So far, these have been the only areas of concern on his body.

Our current plan of attack????

For his fingers.....Band aids!

And lots of them!

We put them on in the morning.
We put them on before school.
We put them on after bath.
I have given the school several boxes to use during class time.
The clerks at CVS are starting to look at me funny!
Yes, band aids have become a way of life around here.

In fact, we purchase so many, I am thinking of buying stock in Johnson and Johnson!

For us, the picking seems to occur when he is bored. So far, the band aids have been effective at stopping it. We also keep his finger nails cut very short.

"Out of sight, out of mind" seems to be the helpful philosophy as well as keeping his hands engaged in another activity. We use the heavy-duty fabric band aids since he can easily remove the flimsy plastic ones. I would find them stuck to the couch or placed carefully on several of his beloved stuffed animals.














While I am up to my ears in band aids, Nicholas, on the other hand is as happy as a clam since band aids hold a special place in his heart, right next to fireplaces, candles, backpacks and garage door openers.



To prevent Nicholas from picking his lips, I found a great product called Eco Lips Lip Care Kit. It is a small kit that consists of lip balm and a variety of carrying devices, necklaces, clips and belt fasteners.


Nicholas prefers the necklace and wears it around his neck. When he has the urge to pick at his lips, he uses the lip balm instead. So far, it works great. The cost for this product is about $20 and may be available in other stores. To visit the Eco Lips store click here.


For those of you also raising a child with skin picking issues:

Posted below is "A Program to Address Typical Skin Picking"
This was developed by the Pittsburgh Partnership.
We have found many of these techniques helpful.

2 comments:

Elizabeth said...

It's amazing what one becomes skilled at, isn't it? I'm marveling at your abilities, here, even as I realize we have our own sets over here! I'm so grateful, too, for how you educate as you write. I had no idea that PWS has these other symptoms as well. By the way, does Nicholas like those crazy decorated band-aids?

The Henrys said...

I, also, didn't know that PWS came with these type of symptoms. I remember when Gracie was being tested for this and all I knew about was the hunger and the early symptoms. What an incredible mother you are, to learn all you can, and to then find solutions for helping Nicholas.

Post a Comment