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Old 06-06-2008, 02:42 PM
Gems Gems is offline
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Join Date: Jun 2008
Posts: 4
Default New mum daughter has facial PWS

My little one is 6 months old and she was born with a facial portwine stain birthmark. When she was born she was seen by 2 peadetritions (SP?) one said the marks were portwine stains and the 2nd said the marks were bruising caused by a long second stage of labour. Anyway they wrote a letter to my GP and after seeing my daughter a couple of times she decided that the marks had faded abit and she just said that these things usually go by themself and to bring her back when she was 6 months. Anyway today I have taken her back and was seen by a different doctor and she says my little one has a portwine stain and we have finally been refered to a specialist not sure what date yet tho. My doctor said that we may be able to get laser treatment. How affective is this? I have posted a couple of pics for you all to see her pws. Also she suggested when shes older we can use make up to cover it up has anyone tried this and how effective is it? Also is laser treatment available on the nhs or is it private only treatment? I think my daughter is the most beautifull thing in the world with or without the pws but I am worried about her future when she grows up and goes to school etc. I hope this all makes sense anyway sorry if it doesn't I'm feeling a bit upset today as we were really hoping that the doctor was right and the marks were going to go by themself and then to be told that they aren't is a bit upsetting. Anyway thank you for reading this and thank you in advance for any replies.
Gemmaxx x
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Old 06-08-2008, 11:04 AM
Gems Gems is offline
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Join Date: Jun 2008
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Hi Jonathan Firstly I would like to say congratulations on your new beautiful baby girl! Thank you for your lovely reply and your good advice. I really appreciate your help.

We are in the UK we are on the Essex/London border. I have emailed the support group and I am just waiting on a reply now. I hope they can put us in touch with someone that can help us. It would be great to get seen by someone that actually knows about birthmarks as my gp seems to know nothing. I'm so annoyed that we were never told anything about Sturge Weber so my daughter hasn't been tested yet. All the second gp said basically was your daughter has a pws but shes healthy get on with it! And she is supposed to be a dermatologist and should know a bit more about pws then the regular gp.

I too have been looking on the net at before and after pics and have seen some great results so am feeling more positive about things today

I would also like to wish you luck with your little ones treatment. I'm sure it will all go great for you. Will you be posting pictures of her once you start treatment? As I would love to see how she gets on.

Anyway I must go now but Thank you again

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Old 06-09-2008, 06:42 PM
Gems Gems is offline
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Join Date: Jun 2008
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Hi We have managed to get an appointment at Great Ormand Street on the 24th June! Will post to let you know how it goes. Once again I would like to say thank you for all your help. Gemma
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