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huntersmom 03-06-2006 04:50 PM

Talking to a Child about thier PWS
???Hi all,

I knew from the day my son was born that one day he would become aware that his face was different from others.* That day has finally come.* He had surgery this past Thursday and as we were getting ready to leave for hospital, he asked what was wrong with his face-this was the first time that he had asked about it.* I explained to him that it was a birthmark and we were on our way to the Dr to work on it.* Then Friday morning he saw his face and how much worse it looked so he asked what happened.* I explained again about birthmark and surgery but then Saturday he asked my mom about his face.* She explained that he had surgery for birthmark and he told her it didn't work.* He is only 3 years old and I'm just curious as to how others have address this issue with young children.* I know that I want to be honest with him and I constantly I'm telling him how handsome he is, how proud I am and even the days we did talk about his face, I told him that old looks don't matter it's who you are.* But once again he's 3 and I don't think he understands.* Are there any published materials i.e. books for children?* I have received some input from another post, but I'm really struggling with this.* (As I'm sure everyone here has at some point) And I'm guess I'm just putting the question out there for any suggestions or other information.*

Something else is how to address things that are said to him.* In the past I have addressed them and he has been unaware of what has transpired.* However, now things are being said directly to him, especially by children at his pre-school.* I feel that I should know how to handle this as a mom and a mental health professional, but I don't-it's different when working with your own family and all the emotion that is tied into it.*

Oh well, I have babbled enough for one day.* Thanks to anyone for listening and who may be of assistance.*

hankbartenbach 03-06-2006 09:38 PM

Re: Talking to a Child about thier PWS
Hi huntersmom,

How you are answering his questions are right on target. My parents explaining to me about my conditions helped me become who I am today. I started laser treatment when I was five and it was a eight hour trip one way for treatments. Being honest with your son about his conditions and explaining it to him at his level of age is the best you can do. Ignoring the problem and questions is the worst thing a parent could ever do and I am glad you are not taking the road. Children become way to mentally unstable and it gets worse as the child gets older. I know a few people with birthmarks that it has happen to.

Now for the comments/jokes, pointing, and staring. As he gets older it will get a lot worse. Teaching him how to not let these things get to him emotionally is your best option. Letting them roll off his shoulder for example so it will not eat him up inside. It will make him depressed somedays, and others he will come home crying. Trust me I have been down that road. Getting him active with your friends kids or neighber kids that are his age, and kids that go to school with him is the best way for him not to become an outcast. If you want to read more about social issues I did write a paper on it and it is on my website if you are interested

My family was always supportive of what ever I wanted to do. A lot of love also.

I hope this helps.


eprmo 03-07-2006 01:48 AM

Re: Talking to a Child about thier PWS
If you need to talk about your situation, I'd be glad to help in any way I can. My daughter grew up with a large H on her nose, and did not recieve any treatment until she was 11 years old. We dealt with all the issues you are concerned with, and jaci explained about her nose all the time. yes, she was tired of it and got very frustrated with feeling different.... but under the circumstances and the outcome, i would say,,she did great!

You can email me directly, and we can "chat"


juliemn 03-07-2006 02:31 AM

Re: Talking to a Child about thier PWS
Ben's just gotten to the ripe old age of 4...and due to schedule issues had his first laser treatment in almost a year just recently. When he looked at himself in the mirror after treatment...he screamed!! Really. His face swells a lot...and usually the 2 days after treatment his eye is swollen shut. Add the purpura...and he said he looked like a monster. But you I watched him, I realized that he thought this was all kinda cool.

When it comes to lasering...we tell him we're going to see Dr. Brian to help keep his face healthy. And of course we tell him that he'll have lot's of spots for a while...but that they'll go away.

None of the kids in his preschool have ever even mentioned the birthmark. I find it odd....not even an innocent question. I know that when kindergarten starts this may change.

Ben is exposed to a whole new group of kids every week over the I manage a campground. There's been a couple of questions.....but nothing else. I've been amazed at the kids' attitudes....and wonder if it's just because he's a cute little preschooler. As he ages, I believe that things may be different. At this point though...he just says "that's my birthmark". And that's usually the end of the discussion.'s the adults that irritate me. We've had a couple of customers out there that I'd like to kick....hard.

We've always just been completely honest and upfront so far. Truth is...we forget about it all the time. The most common question I get from other adults is asking about his "rash". Sometimes I have to look to figure out what they're talking about.

I'm not looking forward to the issues that may arise as he ages. But I figure that the answers will have to match the questions. We'll just take it one day at a time.

There is a book coming out in May. It's listed on the front page of the site here.
The Sturge Weber Foundation has a couple of downloadable books geared towards children. I think you have to register to get access to them. Never a bad idea...they have a lot of information about PWS on the site.


kiddiemom3 03-13-2006 09:46 PM

Re: Talking to a Child about thier PWS

My daughter is 3 1/2 years old. When she was born we mentioned to my older daughter (she was then 2) that the mark is a birthmark. She took it at face value - I even once overheard her tell the baby - you are so lucky that you have a birthmark. Questions about her birthmark haven't really come up - yes she knows she has a birthmark but it's not an issue to us.

One time right after surgery she glanced in the mirror and wanted to know who colored her face. We explained to her that the doctor did it. If the spots remain too long after surgery she will inquire as to how long it will last. At this point I even had to warn her once not to color her face like the doctor does because she wanted to color her face with permanent marker. (she doesn't know about the surgery because we do it under anesthesia)

Regarding her classmates; she has been among 2 different groups and the kids have never made fun of her or even asked questions. She went to school 3 days after surgery and not even 1 kid mentioned anything about it. Older kids will look, sometimes ask what it is, but they don't make fun of her because she's much younger - and not her age.

I hope the info was helpful and if you have any additional questions feel free to email me.


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