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Jaelor 05-29-2008 11:08 AM

Daughter with PWS - am I being OTT?

My daughter is 10 weeks old and has a suspected PWS on her left thumb. The front of the thumb is discoloured / mottled and the sides and back of the thumb are red, leading down to quite an intense red patch on her palm under her thumb. When she's cold, it goes quite a deep purple, at other times, from the front at least, its minimal.

My GP said to just leave it until she's 3 or 4 and see what happens and that they don't usually do anything unless the PWS is on the babies face. Is this the right advice? I keep reading that the younger the better where laser treatment is concerned.

Am I being over the top? I know there are alot of people out there with much larger PWS and in more obvious places, so should I just leave it? I just have this vision of her starting at school and all the kids making fun of her. Should I try and get rid of it for her?

I'm becoming obssessed with it - I'm so worried that I'll miss the window of opportunity in getting rid of it for her.

grumper1 05-29-2008 11:48 AM

Get a second opinion
I would seek a second opinion from a pediatric dermatologist. Like you, I would try to look at the bigger picture and say, "this is just a thumb, not a more obvious place, so just be thankful". At the same time, you are caring for your baby, and not living someone else's birthmark. It can't hurt to get a second opinion from a specialist. If it is diagnosed as a PWS, you can decide how to proceed. Based on my experience, it took a while to navigate the system so it's best to start now. For me, it took over a month to get an appointment with the specialist (and that was with the benefit of having a mutual friend; would have been two months without the contact). Then, we waited 8 weeks for our first laser treatment - purely due to limited appointment availability. Our insurance has covered significant amounts of the treatment cost because the PWS is on my son's face. I can't speak to how they would deal with an area (i.e. the thumb) that is less apt to cause psychological/emotional distress. I don't think you've missed or are on the cusp of missing the window of opportunity. However, I am an advocate of early intervention simply because I believe, based on the literature I've read, that the results are more effective.

Superchikk 06-23-2008 02:14 AM

I agree - I would seek a second opinion and get a more secure diagnosis.

I believe the earlier the intervention, the better - for just about anything.

I know that our insurance only covers treatment for PWS on face/neck. Anything else is considered "cosmetic." However, our doctor's office told us that if we had trouble with our insurance company covering the charges they would advocate for us, as treatment for PWS is considered reconstructive. So if indeed you decide to treat it, your doctor's office may be able to help get it covered by your insurance.

monkeymoo 02-06-2009 04:56 AM

I'm just jumping in late here, but I will say that my treatment on my right hand (including thumb) was one of THE most painful things I have ever suffered through. If that's the only area of PWS your child has, consider her blessed. My $0.02, but I wouldn't put anyone unable to express themselves or understand through that kind of pain without significant medical reason to do so. Certainly not for cosmetic reasons, at least until your child is older and able to express how she feels about it.

michelle.karim 03-05-2009 09:24 PM

Definitely not
Hi. My son is 12 years old and has PWS on his left hand and arm. The PWS is most dense on his hand. We were told when he was born that it was fine to leave treatment until he was older and consequently he only started last year. He had a test patch of laser done on the inside of his lower arm at Great Ormond Street Hospital in London. They used local anaesthetic to numb it first and he coped brilliantly and didn't feel any pain until the following day - it stang and needed emolient cream. They went ahead with his first proper treatment in November and did 47 shots on the inside and outside of his lower arm. They have not treated his hand as the surgeon said this is the most painful area to treat as the digits swell and become very painful - we have been told that they may never treat his hand. The underside of my son's arm has healed very well but, unfortunately, the outside scabbed after four days (even though we meticulously applied cream as instructed). These scabs have left areas of hypo pigmentation. We returned to GOSH today and were told that they will not continue treatment until pigmentation has come back into the areas - where they were once red blots on his olive skin, they are now white blots! We have been asked to return in a year, but not been given any reassurance that the pigmentation will come back. It is very disappointing but I guess one of the risks. Hope this has been of some help to you. Our surgeon at Great Ormond Street Hospital is Dr Samira Syed.

kgregory 03-22-2010 12:58 AM

I'm 15 with PWS on the area around my eye, and though it's almost completely gone now through laser treatments, it was pretty noticeable when I was in elementary school. I thought it might be reassuring for you to know that I was never teased because of it. Most kids just asked me what happened, assuming it was a bruise, and after I explained that it was a birthmark, they were very accepting of it, and a lot of them just asked me questions and stuff. A lot of kids even thought it was cool, because it made me unique. Needless to say, I often dreamt of the day when it would be completely gone, just because I was self concious of it being on my face. Now that I'm at that day, I think that laser treatments were completely worth it.

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