Talking to kids

robolynn29 · #1 09-25-2008, 07:52 PM

Anyone have any good resources for talking to kids - not just about the birthmark, but the laser results after a treatment. My daughter is at a pre-k and I'm looking for a good resource to hand out to the parents so they can talk to their kids about what she will look like after a treatment. It is pretty shocking, but I don't think keeping her out of school for 2-3 weeks after a treatment is to anyone's benefit.

Robin

missy · #2 09-25-2008, 09:05 PM

Have you considered reading Donna's book to them?

http://buddyboobysbirthmark.com/

It is entirely appropriate for that age group and a really good read. Once you're done reading, you can explain about the treatment in simple terms and tell them what your daughter might look like.

Missy

robolynn29 · #3 09-26-2008, 02:27 AM

I've ordered the book - I think it will be great. One for our house and one for school. I just didn't know if anyone else has run across something that works well for kids. Most kids afterwards really understand the "the doctor zapped her with a laser" because of Star Wars, Power Rangers, etc. so I usually go with that theme, but the school was hoping for me to come up with something more than that.

Robin

kgregory · #4 03-22-2010, 12:12 AM

I'm 15, and have been recieving for my facial PWS treatments since I was young. One thing my parents used to do with me was cover it up with makeup, which didn't cover it completely, but it helped reduce the brightness. I reccomend dermablend, which is available at some department stores (I think we got mine at Macy's?)

Kids usually handle the situation very well, and are very accepting. Most of the kids in my class just asked me questions (did it hurt, ect.) and were mainly curious. I was never teased, even through elementary school.

rhonda · #5 03-22-2010, 03:20 PM

Hi Robin,
My son Joey is now a 7th grader in middle school. Here is what we did when he was in elementary school. I started this in the 1st grade and it seemed to work very well. At the beginning of each school year I would set up a time with the teacher to come in and talk to the kids about PWS and laser treatment. I would bring a picture taken 1 day after treatment when it tends to be the darkest and show the kids what he would look like when he returned to school. It was actually a little lighter than the picture by then. I would explain to them what a PWS is and why it needed to be treated and then encourage them to ask questions. I think their biggest concern was would it be painful and would he be in pain when he got back to school. I assured them he was not in pain and that seemed to ease their minds. I think showing them a picture of him, not a cartoon (although this is a great way too) helped them to adjust to what they would see. Joey's PWS covers a majority of his left cheek so it's quite extensive. He would have treatment on a Friday and back to school on Monday. I did this because I wanted him to realize that life does not have to come to a standstill when he has treatment..get back on the horse I guess you could say. I did however send him to school with a large sun hat from sun precautions and the teacher made sure he put it on every time he went outdoors. He also wears Fallene Cotz sunscreen spf 58 everyday, it has a slight tint which minimizes the PWS. We had 5-6 treatments a year during those early years and I'm glad we did because as they get older it's harder to find recovery time.
Good luck and let us know what works for you. It's helpful to hear other parent's stories. Take care.

jpuritz · #6 05-13-2010, 02:52 PM

Just don't do a school-wide presentation on it- that's what happened to me in kindergarten and it was the only time I felt embarrassed about it, ever.

alfritz · #7 05-13-2010, 08:16 PM

Hello everyone,
I apologize but I am not tech savy. I wanted to ask if anyone knew of good doctors in the Chicago area or state of Iowa that can treat PWS? My daughter has extensive PWS, practically covers both of her legs. Also, how have parents decided whether or not to treat the PWS. I keep going back and forth, I have days it doesn't bother me and think it isn't a big deal and then days when I sadden my beautiful daughter will have to live with it. We just can't decide if we should treat it? Any advice on what to do and what doctors to see?

missy · #8 05-13-2010, 11:33 PM

Look here for doctors:

http://174.120.2.174/node/47#illinois

To treat or not is your decision. As your child ages, PWS can cobble and bleb (thicken and become bumpy, perhaps bleed) and early laser treatment and yearly maintenance treatments can help prevent this. However, that all depends on your wishes, your situation, your finances, etc. Speak with a specialist and some other parents and then decide!

Missy

olchan · #9 07-05-2011, 09:48 PM

hi jacob, your story is very inspiring. my 3mo old son has a pws that sounds very similiar to yours, covering a bit of hand and up his forearm. if you do not mind, can you please share some pictures of your pws with me? i am just curious if left untreated how it will be in decades down the road(thickening, cobble&pebble,etc) has your pws darken since birth?

thanks.

i look forward to hearing from you.

Olchan