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  #1  
Old 08-26-2010, 01:20 PM
teardrop2 teardrop2 is offline
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Default treatment for the baby in Europe or Worldwide LATER at home country

Hello,
i somehow recovered from the first shock, of realising my newborn son, having PWS. He has it 1/4 of the face in the area of cheek, upper lip, ending under the eye and going a bit into the eyebrow, and then from the profile going until the ear...we have been tested the first week for SWS and glaucoma. It is clear for now.

I have started to look around asking questions, searching for centers...but i realised that going out of my country (Slovenia) would be difficult, cause treating PWS is a long way..laser repeated many times.......our doctor at Plastic cirurgy said he would start treating at the age of 2. But according to all i read i am sure that early treatment is coorelated to the most success possible....so i dont know now what to do. Does anyone have the idea, would it be possible to go for example somwhere else in Europe or even to USA for SOME treatments (let's say 4-6 treatments - or all the treatments till age 2) and then continue in HOME country? What are your experiences? Thanks in advance!
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Old 08-26-2010, 11:07 PM
missy missy is offline
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Hi and welcome!

My advice would be to write to Dr. Tombris and see if he can find any resources for you that are close. He's the European expert at
http://birthmark.org/experts.php

Missy
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Old 08-28-2010, 10:17 AM
teardrop2 teardrop2 is offline
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Thank you Missy. We would go also to some other country until the age of 2, because of the lenght of the repeated procedure, it is financially impossible for us to go so many times a long distance, but may be 4 times to USA or elsewhere we would manage, i don't imagine acctually the costs....
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Old 09-02-2010, 04:36 PM
PPetty PPetty is offline
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I know that pediatric dermatologists in Germany treat at an early age as well. Munich has a famous dermatology hospital and they have a pediatric dermatology department. http://derma.klinikum.uni-muenchen.de/index.php?ID=1

It would be worth inquiring whith your health insurance whether you can get treatment in another EU member state. I seem to remember that the ECJ decided that EU citizens can go to other EU countries for health treatment and that the health insurance could not object to that (it was in the context of dental work though, but I don't think that should make a difference).
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Old 09-03-2010, 02:21 PM
teardrop2 teardrop2 is offline
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Thanks for links. I will check.

I dont know now what to do. I will try to get a SECOND OPINION from any other doctor in Europe. May be then the insurance would pay? does anybody know how these things go....i mean getting the second opinion. If our doctor says at 2 years, but for example in Berlin where I asked they said the sooner the better....i suppose then the insurance would have to fund us
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Old 09-03-2010, 02:22 PM
teardrop2 teardrop2 is offline
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What is ECJ?
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Old 09-21-2010, 02:33 PM
PPetty PPetty is offline
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ECJ + European Court of Justice
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