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  #1  
Old 09-02-2010, 04:48 PM
Talans Mommy Talans Mommy is offline
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Smile Take a deep breath - It's not always bad news

I wanted to start this thread because after researching this site, it seems that in most cases people get on here and post about their child having a PWS or other vascular birthmark and then never post again. So, there isn't a lot of posts where people received good results. Well, we did and so I wanted to share.

My son was born with patchy PWS stretching from his lower left back to his left toes. At the age of 1 month, he had a doppler ultrasound which showed the PWS was superficial (not deep). Then at 6 months of age, he had a MRI with contrast done on his spine and left leg. They came back fine showing what the ultrasound did. PWS only affects tiniest blood vessels just under skin. No deep problems. No KTS. No growth issues. He is now 8 months old, crawled at 6 1/2 months and is VERY close to walking (pulls up, walks around furniture, walks with toys, stands on own).

We had always been taking him to Dayton Childrens. He would see the Pediatric Dermatologist. Although, he was very good. He did not specialize in PWS. He referred us to Cincinnati Childrens (which is rated in the top 3hospitals in the country for vascular birthmarks and they see children from all over the USA) for laser consultation. The Derm. at Dayton would never give us a clear answer if we would ever have to worry about KTS. He would always say "We'll keep an eye on him".

We went Friday to Cincinnati Childrens. It was soothing to see so many children with PWS there with their parents. I don't wish it on any child or parent. But, its nice to have others to talk to and relate to. Anyway, they confirmed that Talan's PWS were minor and said there is absolutely a ZERO percent chance he will ever be diagnosed with KTS or have any medical problems associated with his PWS. He is not a child that needs to be monitored as he grows.

They said laser treatments would likely result in 50% lightening and would need maintenance treatments probably once per year. They will not start treatments until Talan is one year old. In their opinion, Talan's will not be very noticeable as he grows even with no treatments.

If we decide not to proceed with laser, he does not have to go back to a Specialist for his PWS.

So, please do not panic if your child has a PWS. Not all cases are KTS or other syndromes just because a PWS is present. Find a Pediatric Dermatologist that specializes in vascular birthmarks. Oh and most important, enjoy your little one. They are such a blessing.
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  #2  
Old 09-03-2010, 12:33 PM
missy missy is offline
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I'm so glad you got some good news!! Thank you for starting a good thread about it... I appreciate that.

Take care,

Missy
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  #3  
Old 09-03-2010, 03:17 PM
teardrop2 teardrop2 is offline
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Thank you for good news, really!

one thing i would just add is, that, when the risk of syndromes - STW or KTS is denied, is really the first, most big relief....but then still the PWS resists, and if it is on childs face, i think it definitelly signes and changes his life, no matter if the worst option is denied.... this is just how i feel, after 2 moths living with it....i don't know what will i feel in next years, and i dont even know what to expect from treatments, if we will get any at all, because we are supposed to wait untill 2 years........ but still it is nice to be positive, i agree i am glad for your child, too.
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Old 09-04-2010, 07:33 PM
kaykay kaykay is offline
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THATS GREAT ! yes i think alot of parents would be glad to hear something positive !
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  #5  
Old 09-07-2010, 04:43 PM
Talans Mommy Talans Mommy is offline
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Teardrop2,

Yes, I agree that even after the results are good for any syndrome that the PWS is still there. I don't know if its any different for the parent whether the PWS is on the face or somewhere else on the body. But, I can tell you, it gets much easier to deal with. It was so upsetting for the first few months because I was always worried about people's reactions. But, I do not pay attention anymore and I just enjoy every moment with my son. He is so perfect to me. I am so grateful that he is healthy. Whenever someone asks about it, I just say "Oh those are his little birthmarks" and move on. My little 4 year old nephew asked if he had a boo bo and I told him that those were the little tatoo's that God gave him. He thought that was pretty neat.
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Old 09-08-2010, 12:49 PM
teardrop2 teardrop2 is offline
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i dont want to judge or be on any poit or another - i would say everywhere is difficult to have a PWS wether on the face or any other part of the body, but the truth is also, that face is one part of us that always comes into relationship with one another, it is always there when you look the person in the eyes, i think it is just different on other parts, but it is difficult to compare the suffering on the basis of location. From my point of view i would give anything to be elswhere than on the face, but it is not, and this is our reality. I am glad for you that you dont notice it anymore on your son, I just pray and hope I will be able to deal with it the same in the future.
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  #7  
Old 09-11-2010, 01:37 AM
kaykay kaykay is offline
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pws on the face is difficult. i don't mind my chest and back pws being exposed because atleast its flat unlike my face.

spare tires on my waist however, i'd like to keep that hidden LOL
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  #8  
Old 09-13-2010, 03:51 PM
LizH LizH is offline
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Thanks for posting this!
It's great to hear positive diagnoses for others with pws : )
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  #9  
Old 10-26-2010, 09:04 AM
becnash becnash is offline
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I would have to agree, yes its great when all the tests come back negative and the child is perfectly healthy, but my son has a PWS on 1/3 of his face, and I would give anything for it to be anywhere else on him. He is still my perfect little boy, but kids are cruel and will make fun of him. He is only 2.5 and already little comments are starting from older kids that go to the same daycare center. And then there are the staring from others when ever we go out, and the "OMG what is on his face" comments. I can live with it perfectly ok, but at the end of the day its not on my face. I love my little boys to bits, and most of the time dont even notice it there. We are starting laser in the new year which will be great.

Bec
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  #10  
Old 10-26-2010, 04:38 PM
teardrop2 teardrop2 is offline
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Yes, I understand the situation , perfectly.
I am so sad sometimes. of course glad imenslly that isnt something else additionally, but sad that nature can give such sign, mark to a person on face.
where do you live bechnas? i do have 2 boys too.
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