Do all PWS get bigger and cause other problems? - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-16-2007, 02:11 PM
winka winka is offline
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Default Do all PWS get bigger and cause other problems?

The more and more that I read about this issue the more I am concerned for my three month old. Do all PWS get bigger and cause other problems over time? Her PWS is already big and covers her outer upper thigh and buttock. When pressed upon, it lightens to normal skin color; does this mean it is not serious? I am not sure what to think, I have made an appointment for her this week, does anyone have any suggestions on the questions I should ask her pediatrician? I have a list but I am sure that there are those of you out there that have been through this and know the questions to ask. Any information or comments would be helpful. Like I said in my earlier post, I am not concerned about this for cosmetic reasons, (but maybe I should be for my daughter's sake) but I want my daughter to grow up without medical complications and lead a normal life without a birthmark interfering. I feel very fortunate that it is in a place that can be covered with clothing but I do worry about the medical factors and the fact that our pediatrician doesn't seem concerned about it! Thank you for any information/experiences that you can pass along!
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Old 04-16-2007, 03:25 PM
momofAddie momofAddie is offline
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I am new at this being my child is just 4 months old. Her PWS is on her face, but I am assuming what I was told would be applicable to all PWS. It is my understanding that some PWS are slow growing and others are fast growing. However, it is also my understanding that, without treatment, most all PWS will grow and "cobblestone" with age. I think it prudent to get an opinion from a specialist and then go from there. Also, be careful of the "specialist" you choose. Just because someone is a dermatologist or an ENT, etc, does not mean they specialize in vascular malformations. Hope this helps!
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Old 04-16-2007, 08:23 PM
winka winka is offline
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Default thanks

thank you for replying. I am trying to see if I can find someone who specializes in this area. What should I look for, what did you do? I have an appointment tomorrow with the pediatrician and I would like to go in with a name of a specialist.
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Old 04-16-2007, 10:26 PM
nickbar nickbar is offline
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Please let me know whee you are from and maybe I can recommend someone in your area.

Not all pws will cobble/darken/thicken over time. It really depends on the lesion and an experienced specialist might be able to give you more clues into what the future might bring. I really encourage you to get a couple opinions from specialists.

Is your child's lesion growing...as in spreading out? Covering a larger surface area?

Corinne
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Old 04-19-2007, 03:06 PM
winka winka is offline
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We went to the peditrician and he confirmed that it was a PWS and he wasn't concerned with it as it is not dark/cobbled, etc. It does cover a large surface of her outer thigh and buttock. But I guess because it is something that can be covered by clothing he wasn't even concerned. He measured it and said that we will continue to monitor it, size, darkness, etc. When I asked him about laser treatment he stated that sometimes it can make the appearance worse and it her case where the skin is not raised or dimply he would advise against it. So I really just got a little more information than I already had. We live in the Tampa, Florida area and if anyone knows of a specialist, we would appreciate it as I would like to get a second opinion of someone who deals with vascular birthmarks. I can't tell you what a great resource this website is and it is great to see that there are others like us. Thank you and God bless!
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Old 04-19-2007, 08:42 PM
momofAddie momofAddie is offline
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Default Physician in Florida

Have you gone to http://www.birthmark.org/physicians_list.php, yet? Follow the directions and it will direct you to a physician. Hope you get some help. We were very blessed that our pediatrician knew exactly what to do and where we should go. We live only 3 hours from our specialist, so we feel lucky to have someone so experienced that lives close. Good luck!
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  #7  
Old 04-20-2007, 05:37 PM
wantego
 
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Mine never got bigger and never had the cobblestoning. I think all cases have to be looked at individually
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Old 04-25-2007, 07:16 AM
Charlotte's Dad Charlotte's Dad is offline
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>When I asked him about laser treatment he stated that sometimes it can make the appearance worse and it her case where the skin is not raised or dimply he would advise against it.

I would get a second opinion on this. In all of the searching I have done in the past couple of months (my daughter has a large PWS on her face) I don't think I have come encountered any suggestion that laser treatment (pulsed dye) work make the PWS worse.
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Old 04-26-2007, 04:19 AM
nickbar nickbar is offline
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It is imporant to look at more recent laser equipment/results when determining success of treatment.

Dr Nelson is a great resource for information on new techniques and equipement. You can email him thru this site on the main page.

C
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  #10  
Old 04-26-2007, 07:33 PM
winka winka is offline
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Default Help, it gets worse

We went to the dermatologist today and he is concerned that it may be Klippel-that word that I can't spell or pronounce. They took pictures of her leg and buttock where the PWS is and measured the leg. The leg that has the PWS is 1/4 inch bigger around the thigh and 1/2 bigger around the calf. We have to go back in three months to re-evaluate unless I notice something before then. I don't know if this is helpful or hurtful. I certainly want to take care of whatever we are dealing with here but I am not sure what the syndrome is or how it is treated. He did say that surgery would be an option, that is scary for me being a mother of a newborn who is just the best baby! I have two others to compare her to and she is the most wonderful baby out of the three and I hate that she may have to deal with surgery and other therapy or whatever. I do feel fortunate as it could be worse. I am confused as what to think or do. Does anyone have any advice or stories. Also, he stated that with this syndrome that there may be other vascular abnormalities within her body. Please help with any info or links to get more information for my sanity's sake! Thank you for all your responses! Sorry for the rambling on but I am very upset.
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