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Old 09-06-2005, 05:15 PM
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No offense taken by your post I appreciate your response

I should have been more specific in my previous post. part of our sons birthmark is a little spotty compared to the rest of it. The dermatalogist said that in a few instances she has seen slight fading in those types of areas and would like to see if it is possible in order to lessen the number of treatments if at all possible. She said this was just her opinion and that there are exceptions to every case. I don't know that I have a lot of hope of fading, but some hope is better than no hope. He also has a very light discoloration in the middle of his forehead in a V pattern, which we are told is something totally different and does look different than his PWS which relieved us. Our son's birthmark was only visible on his temple and scalp at birth. It has gotten progressively darker and more visible as he has gotten older covering about half his forehead. He is only nine weeks old right now. We were happy with the visit as we got reassurance that it should not appear anywhere else. I do still hold concern that the spotty area will fill in and get darker as the rest of his birthmark has, but I am willing to wait until spring to treat, knowing also that I may be denied by insurance and have that fight, a bit nervous to even call them. Our sons birthmark is not a dark as some I have seen on the internet and when he is calm and in a hot room it is almost invisible to others, we can still see it as we know where to look, but strangers have no idea. when it is cooler or he is mad it gets dark. His scalp is a light purple color with a defined edge and his forehead is now a light red, though splotchy as it moves toward the center of his forehead with a lightly defined outer edge on that part of the birthmark. He also has red markings on his eye lids, which the docs think are separate, angel kisses, but are not 100 percent sure.

The doc did say we may need an MRI in the future, but right now did not think that it involved his eye, but was not completely certain and he is too young for an MRI. She wants the eye doc twice a year as a precaution for glaucoma until he is two years of age and than yearly after that. She said we can make further decision regarding MRI when he is closer to a year old, but did not think it would be necessary. The doc said our sons birthmark is in the best location for treatment and think we will see good results if we do the treatment. Our son has a lot of hair so treatment on his scalp is not an option.

One concern the doc said she would consider forgoing spot testing and do the first initial treatment because we have to travel so far, is this risky? It sounds risky to me. Having gone through treatment with your daughter, is Pulse Dye treatment something you would recommend? any regrets?
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Old 09-06-2005, 07:33 PM
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Hi !! Personally, I am in favor of test spots. It gives the Doc a good idea about response etc. Not all may agree with me though... My daughters test spots were done and then when we went back, her Dr asked questions about the healing. Did she bruise? How long did the bruising last? Did the skin remain intact etc.....
I do not regret for one minute treating my daughter. We also began at a young age. She was on maintenace treatments-1-2 a year- by the time she was two. I do not have to deal with coordinating treatments with school etc because we do her yearly in the summer. I was unsure about beginning so early until I heard about the possible medical issues with pws. I thought in the beginning it was cosmetic only. The more I researched and learned, the more I realized that I had to do this. No option as far as I was concerned. ALso, infants tend to respond better to laser, so I knew that treating her at six weeks old was going to be a plus.
Her Doctor has only used the V Beam pulse dye laser on her. There are risks with every laser tx. Wait until you see the consent form you have to sign. My daugters results have been good. I went into treatment with realistic expectations. I think that is why I am so happy with what her Dr has been able to achieve for her. Never give up hope.
If there was a regret, it is that I could not get her in to see the Dr before she was six weeks old. I had to wait 5 weeks for an appt.

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Old 09-13-2005, 10:30 PM
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Boy, this is informative. My son was just diagnosed w/ pws at 2 weeks old. the pedi didn't seem too concerned, but i've been doing some research and have more questions. they said mri wasn't necessary because the pws wasn't located on forehead or eye. we will see a derm when he's 3 mos. old. i was given the impression that his type of pws was purely cosmetic so i wasn't so worried about seeking treatment at his young age. however, after reading more in this forum, i'm rethinkin that, especially if it's true that younger patients respond better to treatments. any thoughts?
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Old 09-14-2005, 01:50 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
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I would email the ask the expert on the home page of this site. Dr. Nelson is the PWS or laser expert I believe. It will be helpful to you to hear from the experts in pws and laser treatment. It really is important to have the specialists that deal with pws on a regular basis evaluate your child's case.

GOOD LUCk, and please keep us posted.

you alsomight be interested in visiting the vb support group on msn
and also ck out (great reasource for pws)
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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