New mum daughter has facial PWS

[Gems]

Hi
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

[Jonathan Newton]

Gemma,
Firstly congrats on your beautiful daughter!. I read your story and it really makes me angry because of the ammount of ignorance out there about birthmarks!. Like you my daughter (now two months old) was born with a facial PWS and inncorrectly diagnosed three times by pieditricians (sp?). I presume you are in the UK?. The best resource we found by along was was the birthmark support group. Visit the web site(www.birthmarksupportgroup.co.uk) its all based in the UK and has a list of numbers to call. They put us through to a specialist at great Ormand Street called Jane Lindwood. They have a specialist department just dealing with vascular birthmarks. My wife and I have seen them twice and have a series of laser treatments booked. The support group will be able to advise you where to go locally and put you in touch. We stopped bothering with GPs etc along while ago
From what I understand (Im not a doctor but know exactly how you feel) its important that you get in touch with a specialist as PWS as in a small number of cases PWS can be asocaited with something called Sturge Weber that need to be discounted so you need to see a specialist
Lasering is posible and definately something we are doing. Given yours is 6 months they should be able to do a test spot and we are doing it via the NHS, so yes you can. We have been told she will need anumber of treatments and have planned to do them all before she starts school

Try not to be upset about the marks not goin on their own. I know I have been but I've seen some great before and after treatments and laser technology is improving all the time and I think that if they can now totally remove tattoos then they can remove a natural red mark!!. Even if we dont get 100% clearance then there are lots of specialist covering foundations.


So get in touch with the support group (its a charity and all free) and they will point you in the right direction. Any problems or advice or if you are really worried email me back or I'm on 07779998928.

Kind Regards

Jonathan

[Gems]

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

Gemma

[Jonathan Newton]

Gemma - no problem and glad you are feeling better about things. The birthmark support group put me in contract with Jane Linwood at Great Ormand Street - we have found her fantastic. All we needed to do to get referred was a letter from our GP and they saw us in days. Just ask if you can do the same thing . Any prblems with this I have Jane's email and phone - let me know if you need to speak directly to her.

It's all via the NHS and means you are dealing with specialists whose whole job is vascular birthmarks
Jane Lindwood actually goes and teaches hospitals and GPs about birthmark awareness - let her know about the misdiagnosis.

Good luck - it will be fine!. Laser technonlogy is developing very quickly
Will post before and after and looking forawrd to seeing how well yours does!!.

Kindest Regards,

Jonathan

[Gems]

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