Torn by two coasts PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-25-2009, 09:48 PM
cchubb cchubb is offline
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Default Torn by two coasts PWS

Hi,

I'm writing for the first time to this forum. My son has a PWS on his upper left cheek involving the side of his nose, lower eye lid with a few specks on his brow-line. I've attached a picture.

He's now almost 11 months old and we were meant to start treatment with Professor Harper here in London at his 1st birthday. Prof. Harper, renown here in Europe for pediatric dermatology, plans to give my son GA and has outlined 4 treatments, all covered by insurance. He expects 75-90% clearance of the PWS.

The dilemma is that my husband has now been offered a job in NYC and we are meant to move at the end of March, when my son is to become 1 and start this treatment. So, I am torn by:

- having to find a new specialist in NYC - will he be as good or better than prof. Harper? (does anyone know anything about Dr. Geronemous good or bad?)
- will the procedure be covered by most insurances in the US and if not, what costs can I expect for a laser treatment with GA?
- has anyone 'switched doctors' - i.e. started with one and continued with another due to a move? how did that work for you? any complications/contraindications?
- I'm also confused by some of the postings on this site, they seem to indicate that multiple treatments (in the teens, not 4!) are needed to get rid of the birthmark. Why would that be?

I'm just struggling with what would be best for my child (and financially): 1. be treated by prof. Harper here in London (have the first treatment covered by insurance) and then keep flying back and forth to finish the treatment (basically 3 out of pocket because by then we will no longer have UK insurance - costly but worth it if he's with the right doctor and fewer treatments would be needed), or 2. do everything from the US where he could be followed more closely but may need several more treatments and may not be covered by insurance (I read somewhere that with GA I should expect to pay between $5-6K per treatment?! I am partial to GA because the birthmark is close to his eye and I fear he'll be wiggling all over plus less risk that he'll develop a dr. phobia)

The pressure I have is that if I opt for the prior I need to schedule the treatment here before the end of March.

Any guidance for this pickle would be very much appreciated!!

Thank you,

Grateful mum
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  #2  
Old 01-27-2009, 09:50 PM
nickbar nickbar is offline
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NYC is a great place to be to find experts in this field. Dr. Geronemous is highly respected among his collegues. He was voted as physician of the year for 2008. He has been a pioneer in this field

Is there a way you can find out what type of insurance options your husband will have in NYC? Also, have you considered starting treatment in London and then when you are moved to NYC, continue there? Vascular lesions typically will require multiple treatments. Many people in the U.S. do win approval for laser tx., but it takes some effort to provide the insurance co. with the right information. Given the location of his pws there are medical advantages for the long term to having laser now. This is something that the doctor and you can put together in appeal if it comes to that.

PWS (capillary malformations) can refill over time; therefore, maintaining the clearing can require follow up treatments. It really depends on the pws and multiple tx. are needed to get clearing in the beginning.

Corinne
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Old 03-22-2010, 01:34 AM
kgregory kgregory is offline
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I'm sure you can find someone in NYC, but if not you could consider going to John's Hopkins in Baltimore- it's about a 4 hour drive from NYC, and I've been going there since I was young
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