Help!! Need advice on PWS!!! - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-10-2005, 10:34 PM
rose
 
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Default Help!! Need advice on PWS!!!

My 6 month old daughter has been diagnosed with a port wine stain near her eye on the temple. The doctor said it won't cause glaucoma (blindness). Should I have her evaluted by another doctor anyway? I also read that I should get her brain scanned. I'm really scared.
Is it true that after treament PWS comes back? Is that for all cases or only some?
Does laster treatment cause scarring? After 6 treatments how long before it comes back? Are there different kinds of laser? Which one is best?
Should I have her get laser treatment NOW at the age of 6 months or when she is 8 or 9 years old? If I wait will it get worse darker and thicker? Will it be harder to remove then?
Is early intervention better?

Thank You!!
Anita
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  #2  
Old 06-11-2005, 12:01 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Help!! Need advice on PWS!!!

Hi Anita,

Was the doctor you had your daughter looked at a Optomologist (eye doctor)? Being tested for Glaucoma is the only way to be sure if she does not have it. I have Sturge Weber Syndrome with my PWS (only a MRI can tell you this) and Glaucoma is one condition that is related with SWS. So I have to get my eyes tested freuently. I suggest getting tested first and the doctor will be able to tell you weather he/she wants to test your daughter is 3,6,9, or 12 months. It depends on her preasures behind the eye. Find a different doctor if it makes you feel more comfortable. Getting more then one opinion is very commin when it comes to PWS.

Yes you should get the brain scanned (MRI) that will rule out allot of conditions, and will make you feel better after it is done.
PWS does come back in some cases. It depends on the person, thickness, size, depth, and age. Every person is different, and PWS can effect each person differently.
Laser treatment has improved over the years and has machines out there that do not scar, and is safe on infants. The V-Beam Pulse Dye Laser is one of the most commin used. I have used this machine o my facial PWS. I have used four different machines in the 18 years I have been doing laser treatment (23 now). Most likely (depending on the PWS) your daughter will need more then just 6 treatments. It is hard to say when the PWS will come back because everybody is different, and every case is going to be different. If you want my opinion, and others on this sites opinions on how long it will take you can post a picture of you daughter in addictional options when you are typing a message.

Defintly start looking for laser treatment now. Sooner the better in my opinion. In the resource section on the front page of this website you can find a doctor in your area that knows PWS. If you have troubles or can not find a doctor in your area someone on this site might know of someone in your area that is not listed.


If you have any more questions please ask we are here for you.

Hank
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  #3  
Old 06-11-2005, 02:22 AM
rose
 
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Default Re: Help!! Need advice on PWS!!!

Hi hank,

Thanks for your response! The doctor is not a Optomologist he is a Dermatologist. He said because the PWS is unilateral (only on one side of the face she doesn't have Sturge Weber Syndrome. He said patients who have SWS most likely have the PWS on both sides on the face. Does that sound right to you? Anyway, he said she doesn't need a MRI.
He also said that PWS doesn't always come back. I've been reading on the internet that it will come back. I think I might get a second opinion. I'm really stressed out!
I found a picture of her but it looks like the file is too big to send.

Thanks for your help!
Anita

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  #4  
Old 06-11-2005, 02:39 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Help!! Need advice on PWS!!!

Hi Anita,

You defintly need to get a Optomologist's opinion. Asking a Derm about eye problems is like like asking a ear doctor about foot problems. LOL They do not know much on the subject if you know what I mean. Ask the eye doctor when you find one to get a MRI done. This Derm does not sound very info about PWS and for sure not SWS. I have personally met people with SWS that only have PWS on one side. I know of people that have SWS and not PWS at all. I strongly suggest getting a second opinion for laser treatment. Did you find one in the resource section? If not let me know, someone on this site might know of someone in your are (including a good eye doctor). I have talked to people on this site even out of the country (USA).

PWS does not always come back, but allot of them do. It really depends on the person and the type of PWS.
Could you send me the picture hankinne@cox.net If it comes through to me I can put it on here for you. If you want to see some of my pictures they are in this PWS section. The newest ones are in the topic "Surgery with Dr. Waner with TLC filming it"
I think it is probably on page two or three of the section by now.

Let us know if you can not find a doctor in the resource section.

Talk to you soon.

Hank
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  #5  
Old 06-11-2005, 03:01 PM
Thankful
 
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Default Re: Help!! Need advice on PWS!!!

Hi Anita,
Just wanted to reply & say the sooner the better that you start treatments. My daughter started treatments when she was 2 months old. She has had treatments approx. every 8 wks. It has faided a lot. We are still taking her, but the treatment expearance is getting harder to go through, for her & me as she gets older. She is now 5 yrs. old. She gets no anestisa. Never has.
She has also been to an optomologist three times, who thankfully says her eyes are OK.
Missy
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  #6  
Old 06-12-2005, 03:21 AM
Texasss
 
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Default Re: Help!! Need advice on PWS!!!

Hi Anita....I was reading your post and thought Id give you my thoughts on some of your concerns. I read where you were really scared and stressed out. Im guessing your a young mother and fear for your child. Please try not to. Your daughter is going to be just fine. There are those of us that are waaaay up there in years that have lived with it without complication other than the occasional taunts and looks you get throughout life. I think that starting her as soon as possible with the treatments is best. By the time she is older she will probably only need occasional touchups. It is true however that the stain will probably thicken throughout time if not treated. Mine didnt start thickening or bumping up until I was in my 40's. I am currently scheduled for my first appointment to have treatment evaluated next week. Now as far as the MRI...hmm...a tough decision perhaps but do this first. Do as Hank suggested. See an eye doc and kinda go from there. To do an MRI on a 6 month old is going to be tough as she will have to be immobilized and the odds are it will not be necessary anyway. If shes not symptomatic at this point Id probably opt to delay the scan. Once again...Try not stress over this if you can. Shes gonna be ooook! ;D Take care and good luck with everything. Texasss :
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  #7  
Old 06-13-2005, 03:17 AM
rose
 
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Default Re: Help!! Need advice on PWS!!!

Thank You so much for all your support! I feel so much better! I was worried sick. I will make an appointment with an eye doctor and another appointment with a different doctor for a second opinion. Do you know of any excellent vascular birthmark doctors in Santa Rosa, Auburn or Stockton, California?
I've made a decision to start laser treatment early. My biggest concern is how to proceed? I am very afraid to put her under anesthesia. I do not want to put her to sleep six times. It seems to risky. Is it okay to do it without?
The doctor said we could but it would be VERY, VERY traumatic for her, me and the doctor. He said we could hold her, strap her and put goggles on her. It would take about two minutes. Does it really hurt??? Is the pain so bad that she should be put to sleep?

I will send the picture to hank to post! Thanks Hank!

Thank You!
Anita
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  #8  
Old 06-13-2005, 08:05 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: Help!! Need advice on PWS!!!

Hi Anita,

I thought I might share some information that I've learned from the doctors that treat my son.* My son Ben (3 years old) has a PWS that includes his nose, upper lip, cheek, eyelids and temple.* I was just as scared as you when he was diagnosed and had just as many questions.* My questions weren't as good as yours though.* You're already gathering some of the information that it took me a year to find.*

Only a doctor can give you the right answers for YOUR child, but there are some guidelines that are generally followed with a PWS.

Glaucoma is a factor with a facial PWS.* The majority of people who suffer from glaucoma that is PWS related have involvement of one or both eyelids...usually the upper lid.* I would still definitely have an initial pressure test done, and discuss follow up with the opthamologist.* Sometimes there is vessel involvement that is not visible on the skin, so regular pressure tests are a good idea.* We bring Ben for a pressure test every 6 months, some people go yearly, and some go more often than 6 months.* Everyone's different.

I think the MRI at this point is a personal choice, and it does involve about an hour sedation for an infant.* Babies with forehead and upper eyelid involvement are the ones that doctors usually recommend an MRI for right away.* This is the area of the face that is usually a marker for Sturge Weber Syndrome.* But it's not written in stone.* Bilateral involvement does make SWS more likely, but many people with SWS have only unilateral involvement.* It's the forehead and upper eyelid involvement that doctors look for initially.* Remember, very few people with a facial PWS actually have Sturge Weber Syndrome.* It's very rare.* You'll have to decide yourself, but if your daughters forehead (directly above the eyebrow) and upper eyelid are not involved and she is not suffering any problems that may be SWS related...my opinion would be to wait for the MRI unless a pediatrician thinks it's necessary right now.* MRI's are more conclusive after the age of 2.

The laser treatments are also a personal choice.* You'll find many advocates of early laser treatments here, myself included.* When the skin is very young it responds much better to treatment.* The number of treatments it takes is different for everyone.* Ben's going this week for number 9.* We had 7 treatments with the V-beam pulsed dye laser, and am just about to have treatment number 2 with the C-beam. He goes every 8 weeks, and the end of the initial lasering is not yet in site for us.* They say the average is 6-8 treatments, but I've heard as little as 5 and as many as 50.* Everyone's PWS responds differently to the laser.* Generally after you get to a point where there doesn't seem to be any more fading, you will stop having laser treatments at regular intervals and go back for treatment when the PWS starts to darken again.

I'm also an advocate of anesthesia for little ones.* It is much less traumatic for the babies and little children.* Ben is only out for about 30 minutes, and the anesthesia is only administered for about 12 minutes, and Ben receives about 350 zaps to his face, and about 6-10 zaps to his hand.* Babies with smaller areas to treat are given anesthesia for even a shorter amount of time and usually does not require intubation. The laser treatment itself is very quick, but if it is close to the eye will require and eye shield which would be hard to use on a very upset and scared baby.* Laser treatment is not painless.* With the anesthesia they will remember nothing.* To me, holding down my screaming baby would be very traumatic. IMHO

Okay, I've gotten really long, and I've probably reanswered some things that Hanks already covered.* Sorry.* I'm just remember what it's like when you start this journey.* I just keep remembering that our children are much more resilient than us.

Congrats on your baby!!* Is this your first?* And isn't it so much fun?

Julie
(mom to Ben...PWS/SWS)
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #9  
Old 06-14-2005, 11:25 PM
Nancy Borland
 
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Default Re: Help!! Need advice on PWS!!!

Hi Anita,

My son is 19 months now and he has a facial PWS on the left side of his face. He has undergone 4 laser treatments now and with each he has been put under and also has to have an eyeshield put in place. He is under a very short amount of time, maybe not even 20 minutes and the whole thing is over. In my opinion, I like the fact that he is out for the procedure, I believe that it is less traumatic for him. When he is done he is taken to recovery, wakes up, drinks some juice and we are on our way home within 45 minutes of him being in recovery.

I am glad that I started treatments early for his sake, while he does not remember a whole lot. Also, children are very cruel these days and anything that I can do for my son now to make his childhood and growing up easier is what I want to do. I also have another 4 year old little boy and he is wonderful with his baby brother. We have taught him about his brothers PWS and share certain information with him. Now, and even only at 4, when kids stair or make comments, even adults, my 4 year old will tell them that there is nothing wrong with him, he just has a PWS. I think that people need all the education they can get on the subject.

Sorry if I'm rambling, I just think that treatment early is good. Keep doing your research and yes definately see an opthamologist early on.
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  #10  
Old 06-15-2005, 01:28 AM
alexasmommy
 
Posts: n/a
Default Re: Help!! Need advice on PWS!!!

HI. Is it possible to go to Irvine Cal? Dr Nelson is one of the best Vascualar Birthmarks specialists.
Here is his contact info......
J. Stuart Nelson, M.D., Ph.D.
Beckman Laser Institute and Medical Clinic
1002 Health Sciences Road East
University of California, Irvine
Irvine, California 92612-1475 Tele: 949-824-4269
Fax: 949-824-8413
Email: jsnelson@uci.edu

Good luck.....
Elena
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