Port Wine stain or salmon patch? - Vascular Birthmarks Foundation Forum
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  #1  
Old 08-04-2005, 06:35 PM
confused
 
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Default Port Wine stain or salmon patch?

Our child was born with a pinkish birthmark on the right side of his head a little on his temple area and into his hairline.* He also has what we are told are angel bites on his eye lids and a stork bite on the back of his head. The one on his forehead gets brighter when he is cold or angry and has fuzzy edges. He is a little over a month old and the birth mark* has not had any major changes, it does appear somewhat brighter than at birth, but only slightly.* When he is warm the birthmark is fairly faint in color.* We have seen two doctors that give different opinions. The first doc says that it is a PWS and we should be concerned about SWS given its location, however, they have said that they have never seen a child with a PWS.* The second has treated children with PWS and SWS and says he is not convinced that it is a PWS and does not have concern about SWS.* *Does it sound like this is a Port Wine stain or could it be a salmon patch?

We are scheduled to see a pediatric dermatalogist and an eye doctor* in Milwaukee, WI.* Has anyone brought their child to the Milwaukee Children's hospital?* If they say it is a pws has anyone had a child this young treated with laser or are doctors even willing to treat a child that is only a month old and if so is it painful?
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  #2  
Old 08-04-2005, 11:59 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default Re: Port Wine stain or salmon patch?

Hello and welcome. I am so glad to hear that you are getting multiple opinions. I would tend to lean toward the experienced doctors (the one that has treated pws and sws). I am amazed how often doctors bring up sws just because it is on the face. It is a good idea to rule this out...but I hope they did not upset you and get you too worried. My son has similar stork bites and when he is mad/crying they are more obvious.

As far as laser, my advice is to go to someone that has a lot a lot a lot of experience treating with lasers. It depends on the doctor how early they start treatment. My son has had 8 tx for hemangioma. It is painful and near his eye so he is put under anethesia. He did have one tx. done holding him down (with numbing cream) for a few test spots...the entire tx. took 15 seconds. I describe it like holding them down for immunizations. I would not recommend doing laser tx. for anything that lasts over a minute of zapping (unless you have family history of anethesia problems). It is also important that the eyes are protected during laser tx. The anethesia is a light sedation via mask. Ck with the doctor on what age they start laser tx.

These are the two doctors in your area on the vbf resource list. Dr. R has a wonderful reputation and if you haven't seen her I would recommend you do.



Dr. Linda Rabinowitz
9000 W. Wisconsin Ave.
Suite 411
Milwaukee, WI 53226
414-266-6852
Treats all vascular lesions in all ages.

Beth A Drolet, M.D.
Associate Professor of Dermatology and Pediatrics
Medical College of Wisconsin.
Medical Director of Dermatology and Vascular Anomalies Clinic
Children's Hospital of Wisconsin
Office phone 414-805-5304
Appointments 414-607- 5280or 877-607-5280


Good luck. and welcome to the group.

Corinne
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Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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  #3  
Old 08-05-2005, 05:36 PM
QCBirthmark
 
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Default Re: Port Wine stain or salmon patch?

I wish I would have known that our daughter could have had treatments earlier bc we would have gone and had them started. That being said, the doctor we see told me it's like a hot rubber band smacking your face for 5 minutes. When we were told that we opted for her to be put to sleep. We go to the Shriners in Boston.

To be honest I am sure it's a pws. You came to the right place though. You will find an answer to almost every question you have here about pws or sws.

Jeni
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  #4  
Old 08-05-2005, 06:30 PM
confused
 
Posts: n/a
Default Re: Port Wine stain or salmon patch?

Thanks for the input and information* I will keep that in mind when we speak with the doc about possible laser surgery if needed.
He is going to see Dr. Drolet, hope she is as good as Dr. R.

The first doctor our pediatrician referred us to unfortunately* caused us a great deal of distress.* Maybe its just a case of hating the messenger, but it just seems that there are right ways to say things and wrong ways.* For example, when she told us that she knows of a doc that has always looked odd to her and now thinks she probably had a PWS removed just after telling us she thought our son has a PWS.* Than to tells us, dont lose any sleep, but he does have a twenty percent chance of SWS prints off a medical page of info that* might as well have been in French to help us better understand what we were dealing with.* This is our first child and we are already overly paranoid, so to hear that was a bit shocking.* The second doc was awsome with info and calming our nerves, of course his message was a bit more optimistic than the first.* I am just grateful that he referred us to a specialist, the wait an see approach does not really sit well with me.* We want to make sure he gets the best and most timely treatment if it is necessary.* No matter what PWS or not we love our son more than I ever imagined.
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  #5  
Old 08-05-2005, 08:36 PM
QCBirthmark
 
Posts: n/a
Default Re: Port Wine stain or salmon patch?

Well I definitely think you are on the right track. The first doctor that told you about the pws to be honest had a horrible bedside manor. I hate doctors like that. If you look under my profile you will see our website. Please go and check it out. I will be updating it this weekend. Hank and Geoff both have very awesome websites. Julie has a great website for her son Ben too. At times you feel that you are going through this alone but trust me when I say there are people out there that are there for you. If you ever need to talk...you or your spouse please don't hesitate to send an email. My hubby or myself are always willing to talk about this stuff.

Jeni
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  #6  
Old 08-06-2005, 10:13 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: Port Wine stain or salmon patch?

Hi,

Without seeing the red marks, it's hard to say exactly what he may have going on.* In general, the "stork bites" on the back of the neck/head are considered macular stains and are very common.* They generally do not go away.* The eyelids may be "angel kisses", the same type of mark (macular stain).* If they are "angel kisses" they generally will fade, usually by the age of 2.* These are both vascular birthmarks.*

The red mark on the forehead/temple could very possibly be a portwine, and if it is....you may possibly include the eyelid involvement in the same category.....but I'd better leave that diagnosis to a knowledgeable doctor.* It does sound like one though.

If it is a portwine stain, then of course you should discuss any testing with the doctor.* If a portwine stain is diagnosed, and there is eyelid involvement...I would be most concerned about testing for glaucoma in the immediate future.* Then I would look into finding out about laser treatment and if it would be your choice to pursue that avenue at this age.* There are advocates of both early treatments and the wait and see approach out there.* ( I myself fall into the early laser treatment category, but it's a personal decision).* Laser treatment in little ones is very often done under general anesthesia depending on the size and location of the area being treated.* Most doctors have a minimum age at which they will begin due the anesthesia.* I think 6 months is a common one.* We started at 14 months...but we didn't get our definite diagnosis until 12 months of age.

The best thing to do is educate yourself.* If in fact he does have a PWS, you may run into medical professionals that are not familiar with it.* Generally because they don't see it enough to think about it.* Unfortunate but true.

Screening for SWS is a hard call.* Testing for it is done by doing an MRI with and without contrast, and sometimes can be inaccurate in very young infants.* Some have tested in infancy, just to have to do it all over again after the age of 2.* It does involve sedation for little ones.* This is another decision that emphasizes the importance of the "right" doctors for your son.* It's a much easier decision to make when your on the same page with the doctors, and have all the facts.*

Remember that SWS is not the norm, it is the exception.* Most people with facial PWS do NOT have SWS.* There are some markers that make it more likely (i.e. upper forehead and upper eyelid involvement), and there again is the reason to find a good doctor.* Other parents opinions is usually a great place to start.* As far as vascular birthmark treatments,* I have heard Linda R's name a lot from parents on this and other boards.*

My son Ben had no outward signs of complications, so we chose and were advised to forgo the MRI until he was older.* When we did do the scan, it turned out that he did have it.* Do I wish I would have done it earlier?* Sometimes yes...usually no.* Do I think I got good advice from the doctor who said to forgo the scan?* No.* Ben's initial MRI was at the age of 33 months.* And looking back...I realize it gave our family a much less stressful time to enjoy our baby.

Which is the most important part of all....enjoy your son!!!* It's a lot to take in, and a frustrating road sometimes.....especially for a first time parent.* My best advice is to take time to watch the miracle of him....because they grow up soooooo fast.

Congrats on you new baby!

Julie
(mom to Ben)
http://home.earthlink.net/~jshiggins/index.html
jshiggins@earthlink.net
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #7  
Old 01-19-2007, 03:08 PM
red head
 
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Default

hi i have been told today my birthmark is a stork bite i'm 27 and although it faded when i was a child it's started to become prominent again maybe all the sunbeds over the yrs haven't helped i'm hoping i'll be able to get rid of it with laser

Last edited by red head : 01-19-2007 at 03:16 PM.
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  #8  
Old 02-02-2007, 10:32 AM
red head
 
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Default

for anyone interested i'm getting my first laser ktp tomorrow i'm getting worried now
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