PWS present truly at birth? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 01-13-2006, 09:08 PM
rhonda rhonda is offline
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Join Date: Jan 2006
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Default Re: PWS present truly at birth?

Good luck with your appointment. You may also want to check out John Stuart Nelson at Beckman Laser Institute in Irvine, CA. Top Dr. in his field and most experience with kids. His staff is wonderful. I also met with Dr. Frieden in 1997 when my son was born, but based on his experience working with kids and his dedication to research in this field I chose Dr. Nelson. We also lived in the Bay Area and had to consider the travel. It's worth your time and airfare to research all the best options. You will need an MRI to rule out Sturge-Webber. I'll be happy to share more information with you if you'd like. So many good advancements have been made in this field since my son was born 9 years ago.
Take Care
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  #12  
Old 01-13-2006, 10:37 PM
karaokeyoga
 
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Default Re: PWS present truly at birth?

Thanks for this, Rhonda.

At this stage, our focus (worry) is Sturge-Weber. It's difficult being away from resources at home and having to wait until we can get the MRI, etc. Our daughter's mark is relatively large, but stops about a half-inch from her eyebrow, so we're hoping there's no effect on her eye. On the top, it goes quite far up, close to her crown. It's a difficult situation to be in. Knowing that she is already a 1-in-300 for PWS, it doesn't seem that unlikely that she will be a further 1-in-8 or so PWS cases that also has SWS.

For the PWS, the thing on my mind now is balancing the "get started now" impulse with the fact that technology keeps getting better. Is it better to wait a few years before starting? If we start now, is there a chance that treatment(s) she gets today will negatively impact the treatments that might be available a few years down-the-road?
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  #13  
Old 01-14-2006, 01:32 AM
rhonda rhonda is offline
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Default Re: PWS present truly at birth?

I can understand your worry and concern. I remember feeling so overwhelmed by everything associated with a port wine stain. What I can say is that you can't worry about what you don't know. Wait until you have the MRI and then deal with that. You don't need to know if SW is present to begin treatment. From my experience with this, the earlier you start the better. PWS is progressive and the earlier the treatment, the better the result. You should email Dr. John Stuart Nelson with a picture and see what he has to say. I can tell you that a few weeks isn't going to make a significant difference so don't worry about anything and deal with this when you return to CA. Our son had his first treatment when he was 11 mos. old. You can find Dr. Nelson's information on the front page of this website. Try to take this one day at a time. Take care and write anytime. -- Rhonda
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  #14  
Old 01-16-2006, 12:31 PM
karaokeyoga
 
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Default Re: PWS present truly at birth?

Quick update on our Mirei. I took your advice (THANK YOU) and contacted Dr. Nelson. He told me to contact Dr. Frieden immediately. I've done that, and she believes we're dealing with a hemagioma. We are seeing Dr. Frieden on Thursday.

And I'm so happy that both Dr. Nelson and Dr. Frieden responded so quickly... both over the weekend.
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  #15  
Old 01-16-2006, 05:01 PM
rhonda rhonda is offline
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Default Re: PWS present truly at birth?

Good luck with your appointment on Thursday. You'll be in good hands. Take care. -- Rhonda
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  #16  
Old 01-24-2006, 08:40 PM
karaokeyoga
 
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Default Re: PWS present truly at birth?

Hello everyone,

We met with a specialist in Japan just before coming back to San Francisco. He confirmed that our daughter has a hemangioma. A few days later, we met with Dr. Frieden in San Francisco who also confirmed the same thing. So, I will now be switching forums. We will also be making an appointment with Dr. Nelson to get his advice on strategy for laser treatment. On Friday, we're having an ultrasound done to see if there are any structural anomalies.
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  #17  
Old 01-28-2006, 05:44 AM
Japangioma Japangioma is offline
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Default Re: PWS present truly at birth?

My son had a large strawberry mark on his forehead but as he grew older the mark moved up from his forehead and onto the top of his head. It also stretched out and is now invisible unless you look really closely at the skin.

If your daughter has hair growing normally through the PWS then it may also creap up and off her forehead as her head gets bigger.

Just a thought.

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