Relocation: Finding doctors (or flying back home?) - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-27-2004, 08:28 AM
kris_s
 
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Default Relocation: Finding doctors (or flying back home?)

Hi,
our little baby has a big PWS in the face that needs treatment. We currently have a doctor with a very good reputation, but it seems that we will be forced to move to the other side of the country.

We could fly back for a week or so all the way across the country for every treatment, but I am not sure that this would be a good choice, especially with a baby that has undergone PWS treatment with anesthesia.

On the other hand, I believe our current doctor is really good, and I am not sure we can find one just as experienced in our new location.

What we ask ourselves: In how far is the treatment of port wine stains routine? Or in other words, is it likely that most doctors offering this treatment will achieve similarly good results?

More importantly, what can go wrong in a treatment - what are the risks? Is it possible that a doctor causes serious problems by not doing the right things? Or is the worst that can happen that the treatment is ineffectual, and one can try again with another doctor?

We of course want to get the best treatment we can for our baby. But we are not sure how to even judge where we can get this best possible care.

Any advice on finding, rating, selecting and judging doctors for PWS treatment would be most welcome and much appreciated.

And finally, as our most likely destination right now seems to be Southern Florida, does anybody on this list have any experience with the doctors down there? Thanks so much!
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  #2  
Old 10-27-2004, 09:04 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:Relocation: Finding doctors (or flying back home?)

I assume your treatment is laser. Laser needs to be done by experienced doctors. The pulse dye laser is pretty safe...but in the right hands. Where are you moving from?

Hopefully are members from Florida can give you specific info about laser docs. I can tell you that Dr. Hochman in SC is one of the best...and he has a very good laser for PWS. (and a lot of experience and great recommendations).

Corinne
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  #3  
Old 10-27-2004, 09:14 PM
kris_s
 
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Default Re:Relocation: Finding doctors (or flying back home?)

Thanks Corinne...

Yes, I am talking about laser treatment. I was under the impression there aren't really any other options for PWS? Regarding the right hands, how does one judge what the right hands are?

Do you have contact information for Dr. Hochman, by any chance? He is not in the doctor's list, as far as I can tell.

And do you (or any other person on this list) have any experience with traveling for treatment, with an infant? Is it managable, with the GA and all, to fly in just before the treatment? How long does one need to stay after? A week? Sorry for all these questions, but any stories from practical experience would be more than welcome.

Thanks again!
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  #4  
Old 10-27-2004, 09:24 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re:Relocation: Finding doctors (or flying back home?)

Hi, I travel via car for treatment... usually a child is able to go home after laser right after they recover from the anethesia... so for us we get to the hospital around 7:30am and laser starts at 8:15, we are on the road for home by 10:30. Seriously. If the child is not vomitting, takes fluids fine after waking up, you are discharged. I think if you are going to fly in...staying overnight in the area is a good idea....but flying home the following day should be no problem. The child may have to take a Tylenol for discomfort (its like a sunburn feeling adults have said). Keeping the ointment on it is the worst...cause it is so messy.

Dr. H's info is
Last Name Hochman
First Name Marcelo
Title/Specializing In facial plastic and reconstructive surgery and otolaryngology/ head and neck surgery.
Hospital/Clinic The Facial Surgery Center
Address 2097 Henry Tecklenburg Drive Suite 212 West
Address Charleston, SC 29414
Work Phone 843-571-4742
Cell Phone
Fax 843-571-3619
E-mail hochman@facialsurgerycenter.com
Updated 3/31/2004
Misc. Information http://www.facialsurgerycenter.com/

Also, I know of another parent that drives to Charleston for treatment and has worked out a great deal on a hotel there. Her son also has a PWS.
Corinne
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  #5  
Old 10-28-2004, 12:26 AM
Jin9084
 
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Default Re:Relocation: Finding doctors (or flying back home?)

Hi. My son has a PWS and is treated by Dr. Hochman. He is under GA every six weeks. We are released as soon as he wakes up and drinks. There is a hotel that I stay at that gives me a great rate. It has an indoor pool. That makes the trips easier on my son. I know that SC is a little far but Dr. Hochman is great. If you have more quesions about him please feel free to email me. mom2austinhunter@msn.com

Jinny
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