Does anyone have a child with a port wine stain? What should we expect?

[Selenium]

My ds is 3 months old and was born with a large red birthmark on his cheek, which we're pretty sure is a pws (only through looking at pictures on the internet, mind!) We have been referred to the general paediatrics department at our local hospital and have the appointment in a couple of weeks. I was just wondering what we should expect in terms of possible treatment on the NHS and how effective it might be? From my reading, I understand that current laser treatment is quite good but should be done very young (

Hi Selenium

I don't have any experience of having a child with a pws I am afraid but I wanted to reply to your post as I had a pws treated as a child and wanted to offer a bit of support or maybe even a few tips.

My stain was approx the size of a fift pence price and in a vey central location on my face so very noticeable. I am late thirties now and had my stain treated privately at the Lister hospital in London in 1986 or so as at the time I had treatment they were the only place in the uk who offered it (how my poor single mum afforded it is a mystery, bless her).

I had four or five treatments with the pulsed dye laser and had very good results. There was a very small area of slightly red skin remaining but this did not look particularly odd just a variation on normal if that makes sense. As I got older (pre treatment ) my stain became a lot darker and I do believe that if the treatment had been available earlier I would have complete clearance, so you are most definately right to go for treatment early.

My tips if they are of any use are:

If you can, go for complete clearance, as any remaining stain can darken and sometimes enlarge again as you age. This happened to me albeit to a small degree and I opted to have a few top up treatments in my late twenties. The benefit was not as good later on and also my skin did not cope with the treatment as well. Much better to get it out of the way as early as possible.

Young skin is amazingly resilient and can take more treatments in my opinion. i had no scarring whatsoever despite being quite prone to picking my scabs and even having a infection on one occasion due to this . If you can I would suggest asking for some antibiotic ointment to apply post treatment as this will prevent this happening in any case.

I am sure the dermatologist will discuss this with you but I believe now that if you don't get really good results on one laser they can try others, this was what the doctor said to me at my last visit so it may be worth checking this out if things slow down with treatment. This might influence where you are referred.

I have always been seen by a consultant dermatologist, not sure if there are consultant paediatric dermatologists but I think the main thing I would ask is how much experience they have of treating pws stains and specifically in children. As with all things it's a mixture of art and science!

After the treatment ask them to apply cold compress to the area then lots of emollient once it's cool, this seems to reduce the swelling/ scabbing considerably. It's really really important to keep the skin moisturised and essential to reduce sun exposure to an absolute minimum for as long as possible after treatment so make sure if your little one goes to nursery etc they know to use factor fifty even in ordinary sun. I never needed any pain relief as there wasn't any but perhaps for young ones carpool might help if there is a bit of swelling etc.

As far as the treatment goes, I personally never found it that uncomfortable, very much like someone snapping an elastic band on the skin. If I had had a local anaesthetic it would have been that much more comfortable. If your little one has to have a larger area treated its probably worth getting sedation as it will make things that much less stressful.

Not sure how much help that is but I wish you all the luck, The results these days a fantastic so in a few years you will have forgotten al about his pws no doubt!!

Have you seen the Birthmark support group.

www.birthmarksupportgroup.org.uk/

Its a great source of info and also has links to a private FB group they run if you are on FB. No one can see it on your active timeline so you have total privacy but all the Mums and Dads compare notes and make sure their DC are getting the very best treatment. The support is great.

DS had a massive hemangioma that had to be surgically removed so i know how overwhelming it can all seem.

GOSH are fantastic as they have the tertiary unit. If you need any more specific info pm me. I dont want to out myself

Thank you both very much for replying - it's much appreciated.

Welovehamsters - thanks so much for sharing your story and for all the useful information and tips. It's encouraging that you had such a good result from treatment some time ago now. I bet you're grateful to your Mum that she found the money to get you the best treatment available. I've been giving this some thought and think my ds will probably be glad in the future if we get him treated very young, before he's even aware of the birthmark and starts school, etc. I think it's the teasing at school that I dread the most. Funnily enough, very young children (3 and below) don't even seem to notice his birthmark and accept it as part of him - it's only the older ones who comment! My dd (age 3) has never once commented on it - bless her!

Mrcrumpswife - thanks for the information and hope your ds made a good recovery from his surgery. I have visited that website briefly but didn't know they had a FB group - will have to sign up for that later. I think that's what I'm looking for really is to hear from other people who have been through the same thing so we have some knowledge of what to expect. Port wine stains are meant to affect 1 in 300 people but I don't seem to know of anyone else who is affected in rl! I'm worried that the doctor we see initially will know just as little as us, so want to be well informed so that ds gets the best treatment available and we don't miss the window of opportunity to get the best outcome for him.

There a also birthmarks that fade by themselves. My ds was born with a red birthmark on his upper lip- the hospital told us to come back when he was 1. I was really worried at first, but sometime during that year it faded- can't remember when. It was certainly there in some photos when he was 6 months old, but we got so used to it we hardly noticed it. And then it was gone! I know there are lots of marks that don't fade, but I wanted to tell you that some do.

selenium there are lots of parents on the FB forum that are just starting the BM journey and a flurry at the moment dealing with newborns who have PWS. Loads of pics up and more importantly loads of support and advice

My DS has a port wine stain birth mark. It covers half his face, the back of his fore arms and front of his lower legs, he also has some on his back and chest. The consultant said they'd never seen one so extensive but thankfully it was very pale. The part on his face was the darkest.
He had to have a CT scan at 6 weeks to check it had not grown inside his skull and then we were referred to GOSH for pulse dye laser treatment which started just before he was one. He had,I think, five sessions all under GA and it has faded to virtually invisible. He's 19 now and no one notices it unless they already know.
We were told he has a 10% increased risk of developing glaucoma before the age of 40 so he had eye tests every year at GOSH until he was 16 then at the local opticians but I had to insist they did the glaucoma test as they don't normally on people that young.

I've had a quick look and there is quite a good section at GOSH website-positive information too:
www.gosh.nhs.uk/medical-conditions/search-for-medical-conditions/port-wine-stain/port-wine-stain-information/

I imagine it's more accurate than Wiki-a few things on that contradict GOSH, so be careful if you're googling.

Thanks for your replies. That's interesting, Seeker, that your ds's red birthmark faded by itself. I do hope that's the case for us, but I'm preparing myself for it to be a pws.

I'm definitely going to sign up for the Birthmark fb group later, MrCrumpswife - sounds ideal, thanks!

Lifeisontheup - thanks for sharing your ds's story. How wonderful that the treatment worked so well for him. That must have been scary at the time though, to have a pws that extensive and to need the CT scan so young. I'm not sure whether my ds will be at risk of that (Sturge Weber?) but I think I read that the pws tends to be on the forehead for that (trying not to google too much, as will scare myself! :-o) I read about glaucoma too - does that tend to be a risk if the pws is close to the eye?

DeWe - thanks for the link to the GOSH info - that's really helpful.

Ds's birthmark extends from his chin up to his eye on one side so that could explain the glaucoma risk. It was all so new to me when he was small and no internet to research so just went with what the doctors advised and they were brilliant. We were at the Royal Surrey to start with, not sure if you're in a similar area, you mentioned home counties?

The CT scan wasn't great as he had to have a GA for that at six weeks but I think not being able to research the risks etc was actually helpful as I didn't know enough to be scared. I was worried about how other people would view him though those fears turned out to be groundless.

He had to have GA's for the treatment because they had to put opaque contact lenses in to protect his eyes as it was very close to them.
I used to take the train up to GOSH and then bring him back looking like I'd burnt his face with a cigarette, I got a few odd looks but he never seemed to be in pain.When he was slightly older it used to look like a rash so I had to warn babysitters etc so they weren't worried.

He's never been bullied about it either, he has a beard now but I think that's student laziness now rather than a disguise.
Feel free to PM me if you want any more info, I might be able to dig out a picture of him as he is now.

Thanks, Lifeisontheup. GA at six weeks must've been scary. We're quite close to you but at a different hospital. I hope they'll be as good as the Royal Surrey were for you!

Very good to hear your ds wasn't bullied for it - I think that's what I'm most worried about. If I think of any more questions, I will PM you - thanks.

My DS also has an extensive PWS covering many parts of his body. He is under the care of a paediatric plastic surgeon who specialises in red birth marks. I think the concern about Sturgeon Webers is only if the stain is on the skull. DS had an MRI at 4 weeks under GA, thankfully all fine. Eyes checked too and signed off.

He copes very well with the laser treatments. Had about 13 now, all under GA, with just about every painkiller he can have! Treatment reasonably effective but don't think he will ever be totally clear. Some stains respond better than others, there doesn't seem to be a reason why that may be.

Before I go into any more detail, it might be best to wait and see if it is a PWS first. DS's was originally diagnosed by a dermatologist in his first few hours.Try to to worry too much in the run up to the appointment. I have since spotted a number of adults with PWS to faces who all seem very well adjusted!