Birthmarks - logic are you around?

[pinkmama]

Hi logic, hope you had a good holiday.

Wondered if you could give me some tips on the birthmark front. As I mentioned before, I searched the messages about them and came up with you. Not sure how similar DD2s is to yours. I am really worried about hers, although dont really know why, just have a nagging concern. It wasnt there when she was born, it was like a small dint between her eyebrows and was white, like something had been pressed against is, so we assumed that something had caught her during birth. Then we thought it was bruising, after a week it started to grow and it is now very very red/purple, it has grown and is raising up. I realise it is probably a strawberry mark, and that they go. However I have read stuff which says it needs to be assessed. Our HV said it needed checking, but when I took her to GP he was really dismissive, said you couldnt tell what type it was, what it would do, and basically if it was something bad what could we do about it anyway. This didnt ease my mind as I am sure you can appreciate! Just wondered what made your GP refer you? I just want to see a GP again and either have my mind put at rest that I am indeed a worrying lunatic, or to be referred to someone who can tell me what might be going on. Any top tips would be helpful!

Hello, had a lovely holiday thanks.

You are not a worrying lunatic. Basically, dd's mark wasn't there at birth either, it slowly appeared over time and now at nearly 4 months I think it might have peaked and is slowly shrinking! We thought it was a scratch at first until it kept growing. It's slightly to one side of her nose. Our HV said to mention it to our GP which I did at the 6 week check. She was a bit dismissive, said it was a port wine stain or a strawberry and that it would go. I did some research on the web before I went and found out that it could be there until she is 10 at absolutely worst case! I had also mentioned it to my mum who used to be a nurse and she said that I should ask for a referral to a consultant dermatologist, which I did. The GP wrote the letter during the appointment.

So, we saw a consultant (went private in the end, long story). He said that it was vascular and that nobody could predict how fast it would grow, how big it would get or when it would go. It isn't very big really compared to some that I have seen but he said that because of it's location, it might affect her focussing ability. You know when you have a spot on the end of your nose, you can't help seeing it out of the corner of your eye? Well, it would be like that but all the time, she may not learn to focus straight ahead. Tbh, I don't think that dd's is affecting her sight atm but he decided to refer her to GOSH. We have been waiting 4 weeks for an urgent referral which makes me . I am going to have to phone them in a mo and kick butt.

The only treatment appears to be lasering it off but that would have to be done under general anaesthetic because they would have to have eye shields in so best avoided if possible!

Anyway, if you are still worried, you should definately go back to your GP or possibly another more sympathetic one in the practice and insist on a referral to a dermatologist. Hope that helps...

Thanks logic. Sorry been off trying to get the kids dressed. not sure how we will cope when we go back to school. We are only just up and breakfasted at 11am!

I think it was my research that scared me because it all seemed to say they needed to be assessed by a specialist. Most of what I read came off the GOSH website. Think I dented my GPs ego by committing the cardinal sin of admitting I had been googling tbh. We have loads of GPs at our surgery, so I can easily see another one. Just wondered how you pressed for a referral. It would just put my mind at rest if she saw a specialist, but at the same time I dont want to waste their time. It is growing every day and suspect because it is right between her eyes and comes right down to touch one eyebrow that it will indeed be in her line of vision. Think if the GP had seemed to take me seriously it would have helped. I realise that it will go proably long before she becomes aware of it, so that it good. I just dont want to find out in 2 years time that we should have been seen when she was baby.

Let me know how you get on at GOSH.

Thanksx

Pinkmama - my dd2 ( now 19 weeks) has a strawberry mark on her face and eyelid which also appeared at about 2 weeks. It grew really rapidly from about 8 weeks until her eye was almost completely closed. My GP referred to a consultant plastic surgeon at her 6 weeks check( don't think it matter whether it's a dermatologist or a plastic surgeon - whoever has an interest in them in your area) & she was seen at 12 weeks.

If the eye is completely closed they can develop something called "amblyopia" which basically means that the brain stops processing images from the closed eye. This won't necessarily reverse if the eye is closed for long enough and would mean that dd would have problems with depth perception etc. I think it starts to happen after a few weeks of the eye being closed.

The surgeon said that the indication for treatment was if the pupil was partially obscured by the eyelid. There are different typed of strawberry : diffuse ( like dds) ;deep to the skin ( one part of dd's strawberry on the upper lid is deep - just looks like a lump under the skin - this is the one causing the problem) and pedunculated ( sounds like your dds).

I think the indications for treatment would be if it's in an awkward area ( like nappy), is affecting vision or breathing ( can occur in the windpipe too) or bleeds a lot or becomes infected. The options for treatment are laser or steroid injection ( under GA) - only suitable if they're small, well circumscribed lesions - or oral steroids. My dd had a 2 weeks course of oral steroid at very high dose initially which did shrink her strawberry mark and open her eye. However ( 2 weeks after finishing the course) it's started to grow back again and she may need another course. The steroids made her really hungry and there's a risk of serious illness if she catches chickenpox so they're not without problems. From what you say it sounds like your dd's mark shouldn't affect her vision but if you're worried then I would definitely ask to see a dermatologist or plastic surgeon.

I got more and more worried about dd's mark and only relaxed after I'd seen a specialist so I know what it feels like. I think asking for a referral to put your mind at rest is perfectly reasonable - who cares if the GP thinks you're anxious - it's your child after all! Good Luck!

Hello logic!Have been meaning to find out what was happening with your dd. Forgot to say in my long rambling post that after spending a week watching dd's eye slowly closing I phoned the surgeon's secretary to ask for the appointment to be brought forward . She was seen within 4 days ( not sure what GOSH is like though).

Interestingly, the cosmetic side of things isn't bothering me much now as a) I'm used to it and b) I'm more worried ( like you) about her vision. The plastic surgeon did say that they should stop growing at about 6 months but that only 50% will have disappeared by the age of 5 ( later than I thought). She said that if the mark was still there when dd started school she would do some laser treatment to make it less obvious.

Good Luck at GOSH.

Thank you stramash. That is really helpful. Poor you and dd, must have been a bit scarey seeing her eye close up like that. DD's is definately getting bigger by the day, and at the moment I am uncertain as to how much in her field of vision it is. I am concerned that as it is growing so quickly that it may well affect it soon. YOu are right though, I should ask for referral, I think it is only by seeing a specialist that my mind will be eased (or not as the case may be). But if a specialist tells me to stop worrying I think I would. I have to admit, and for some reason i feel terrible admiting it, the cosmetic side of it does concern me. Feel I should be a better person that that, but I suppose you dont want them to be different and get picked on.

What is the difference between diffuse and pedunculated birthmarks?

Hi pinkmama

Should probably have said that the cosmetic side doesn't bother me as much as it used to. It is hard coping with other people staring at your dd though isn't it? I must admit it still gets to me a bit if we're out shopping and people are having a bit of a gawp into the pushchair. Just want to protect them like you say and will also take a while for me to adjust to not having a "perfect" baby. However, I think I'm noticing it less when I'm looking at her.

Diffuse is basically a spread out mark ; pedunculated is one on a sort of "stalk" like a proper strawberry ( I think) .My dd's mark is diffuse over the right side of her face with a "deep" strawberry underneath the skin on her eyelid. HTH

My dd (now 6) had a birthmark around her eye when she was a baby. I took her to the GP when she was about 3 weeks old and was fobbed off, as you were. The birthmark kept getting bigger, so went back and saw another GP and dd was referred to Great Ormond Street. I eventually came to the conclusion that the first GP didn't know what he was talking about. We once went to a Birthmark Support Group picnic and I found out that this is not an uncommon experience, being fobbed off by GP and trying 2 or 3 times before getting a referral.

My dd ended up having 2 courses of oral steroids and she also had to wear an eye patch to prevent her developing amblyopia. It wasn't easy, but I am convinced that the treatment saved the vision in her birthmark eye.

GL I hope you get a referral and it puts your mind at ease.

Thanks for the info, stramash! I didn't know about the steroids. My dd's isn't actually touching her eye so I'm hoping that we can just leave it. I am used to seeing it too and it doesn't bother me any more. It actually seems to be shrinking quite a bit which the consultant said might happen at 3 months - best case scenario. I spoke to the secretary at GOSH yesterday and she had only just seen the letter so they'll 'probably get back to me next week.' Typical. It seems to be very common in girls though doesn't it? Although I saw a little boy last week with a big strawberry on the top of his head and one on his side.

Just to say thanks again to you all. Glad to know I am not alone with the worrying about it. I did start to think I was odd worrying, but reassuring to know that being fobbed off is common Sparks, and thanks for the link.

My HV came today again and he said it has grown considerably since he last saw it and he still feels I am justified in wanting referral. He says he will speak to my GP about his concerns so taht I am not battling it on my own. Its not that big I suppose, or maybe it is, I have nothing to compare it with, but its the fact that it has grown this fast by 5 weeks makes me concerned for where it will end.

What upsets me most cosmetically is not it being there, I am used to it and feel fairly confident it will go before she becomes too aware of it, but the thing that gets me is when children say to their mums "whats taht on that baby's face" and their mums shut them up rather than just saying its a birthmark, or asking even. I know its hard and they probably dont want to offend, but I guess its that kind of behaviour that makes me concerned for what it would be like for her growing up with it there if it doesnt go. Hope that rant makes sense!

Every child that sees my dd asks what the mark is but mostly out of concern - they are worried that she has hurt her eye. I usually explain to them what it is esp if the parents seem a little unsure. I much prefer if people ask me about it rather than ignore it and it's changed the way I would treat other people with a facial disfigurement in the future.

The plastic surgeon I spoke to said that young children are very accepting of differences ( and that is certainly my experience) it's the older children and teenagers who can be a bit cruel.

Better go - bathtime

One little girl said ' oh look, she has got blood on her nose!' Bless.