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mikerd 07-02-2012 03:35 AM

PWS on Leg - Concerned parent - what to look for
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It's amazing what you only find when you need it. What a great foundation and support group!

My daughter was born just a couple weeks ago. Healthy, happy baby. She has a birthmark on her right leg, covering most of the outside of the leg, and some of the inside of her leg including 1/2 of privates. The attending pediatrician said not to worry, it will fade over a few years, but come back in six months because in rare cases it could be a sign of something else.

Being your typical type-A parent, and based on subsequent comments from nurses, I began searching. I think its a port-wine stain (meaning the ped was wrong and it won't fade). And am now concerned about kt syndrome. I'm getting a referral to a dermatologist (hope that's the right specialist), but that's a few months away.

What I can't find readily through the internet is:

1) What is the likelihood of KT. Apparently its very rare, but then I imagine a PWS like that is also very rare. Is it still unlikely given the existing stain?

2) Both treatment of PWS and help with KT are apparently important early "in infancy". How late is too late, how pushy do I have to be?

3) Is there anything I can do to help / monitor during the waiting period? Things to watch for? Measurements over the next few months?

4) Any other observations, links or advice?

I've attached a picture taken at birth.

abatie 07-02-2012 12:11 PM

Okay so first off my child doesn't have a PWS but rather CMTC but has it all over one leg so I understand the size of what you are looking at and dealing with. I had the same experience as you in the hospital-three doctors/specialists all told us "it's just a birthmark". Oh how wrong they were. One nurse told us that she felt derm. should be called and we asked her to go ahead and make the call. He actually came in and talked about CMTC that day but told us it was so rare that it just couldn't be that. After seeing him three more times over the next six months he sent us to Mayo Clinic to see a pediatric derm. who diagnosed her. A derm. is a good place to start but you may also consider a vascular specialist. I would look on the list on this site and see if there is someone close to where you live. Becca was also thought to possibly have KT Syndrome at birth. We had one doctor tell us no to that but Becca will be seeing a world leading specialist on CMTC in two weeks at the CMTC conference. Hopefully a more reassuring diagnosis that we will know is correct. PWS are not as rare a KT Syndrome. I would get it checked out soon just for peace of mind. I would leave measurements to the professionals because even among them they are always different.

abatie 07-02-2012 12:12 PM

Does this marking change color? Like whe crying very hard, cold, or at bath time?

KatieG 07-03-2012 03:01 AM

My daughter has a port wine like stain on her left leg from the knee down. We see a birthmark specialist in NYC. Hers was not present at birth, rather started showing up around 2 months of age. If you are worried, take her to be seen. You can also email pictures to a specialist (we see Dr. Waner in NYC).

My email is if you have any questions. Try not to google too much and assume things. I spent hours and hours looking up pictures of CMTC and KT children and crying my eyes out. Not everything ends up horrible and bad like you see online.

mikerd 07-03-2012 04:17 AM

Thanks KatieG, abatie for your comments and kind words.

It's hard not to get worried, but mostly I want to be proactive so that we're ready regardless of what it turns out to be. I'm in Canada, and while I wouldn't trade in our medical system for anything, the one drawback is that things can take time if you don't advocate for yourself.

Haven't noticed a huge change in colour (see, Canadian ;D). But I'll be honest, as 3rd time parents we've managed to keep crying to a fair minimum, and with the hot weather the baths are probably the same temperature as the air. Also, we haven't really been looking for that. I'll report back. :)

KatieG 07-04-2012 03:42 AM

I think KT syndrome is only diagnosed through an MRI I believe. I know when they suspected it in my daughter (and it has not been ruled out) that is what they said but we opted to wait as her leg does not show any other issues at this time.

swaltjen 07-05-2012 05:18 AM

Congrats on your little girl!

Her birthmark is in the the exact same place as my 17 month olds! My guy's PWS has a "lacey" appearance though.

When he was born, we got the "it's just a birthmark," too. When my son was 2 months old, we switched pediatricians. Our new pedi was immediately concerned and thought he may have KTS. We scheduled an exam with a member of the Vascular Anomolies Clinic in our city. He looked at the birthmark and thought it was CMTC (not a PWS), but sent us for an ultrasound to see what was going on in there. The radiologist didn't see anything that would make him want to order an MRI, so for now KTS has been ruled out.

We then met with the entire Vascular Anomolies team, and the dermatologist diagnosed the birthmark as a PWS, and wanted to start laser treatments right away (he was 6 months old at this time). We have decided to take the wait and see approach as we weren't too crazy about several treatments involving general anesthesia at such a young age. And to be honest I am not completely confidant with the diagnosis (I still think it's CMTC). So far his PWS hasn't changed so we'll just get him checked regularly unless something does change.

I think seeing a pediatric dermatologist is a great place to start. While you are waiting to see the dermatologist, you may just want to take some photos to have a record if there are any changes. Like abatie said, I would leave the measurements to the docs.

Good luck with whatever you decide. It sure isn't an easy decision!

mikerd 07-05-2012 08:15 PM

Thanks Katie and Sarah for sharing,

Interesting that both of you decided to wait. That's the flip side of it, we hope everything's okay and it's 'only' a PWS. But what to do with the PWS?

Anesthetic and painful laser treatment doesn't sound like a fun thing to put an infant through either. I'll be honest, when I first saw the PWS I completely dismissed it. Must be that parents unconditional love thing. But the reactions of others on her behalf (she's a girl, it'll be tough, self-image, etc) really made me think more about it. I guess I'll just have to ask the right questions of the dermatologist. How less effective is treatment the longer we wait? I've heard some pretty horrible general anesthetic stories...

Anyways, thanks again for your thoughts.

abatie 07-05-2012 08:35 PM

There is research done at Mayo Clinic about the long-term effects of anesthesia on children under two. It is about the fact that the more exposures under two the increased chance of learning problems (and I believe maybe attention problems). I don't remember the specifics because the exposures Becca had needed to be done and so whatever the long term issues are we will deal at the time. I am sharing this because if you are considering laser treatment you may want to at least wait until your child is a little older to try and avoid this because laser requires multiple treatments with anesthesia. The link is on this forum somewhere because we all had a discussion about it at the time.

Jaja Krijesnica 07-26-2012 09:45 PM

I am mom of 20 month old girl in Croatia. She has born with birthmark PWS on her right leg, lower lip,tounge and forehead. Her right leg is thinner and shorter and has varicose veins. We Controlled by the children's surgeons, orthopedists, physiatrists and neuropediatrician. We will go on the laser in later age when we no longer need full anesthesia said by doctor. I read that the laser should be done as soon as possible when the skin is still young. I'm confused.
Neuropediatrician sent as to an otolaryngologist, a cardiologist, dermatologist, vascular surgeon and the MRI. Soon we will do it and we will know much more.

Amazing, her leg look almost the same as your daughter! Recently, I saw another girl in my country with almost the same PWS on the leg!

I apologize my english isn't good :confused:

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