5 month old with facial PWS - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo
1994 - 2015
Celebrating 21 years with
80,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

Thread Tools Display Modes
Old 06-05-2013, 02:40 PM
Mary1978 Mary1978 is offline
Junior Member
Join Date: Jun 2013
Posts: 2
Default 5 month old with facial PWS


I am mum to a beautiful 5 month old baby girl with a confirmed PWS isolated to her on her right eyelid and patchy on her forehead and scalp.After the initial distress of the asthetics of the birthmark, my concern has naturally moved to the possible existence of SWS. We have seen an ophthalmologist, dermatologist and neurologist so far and an MRI has been scheduled for when my baby is 7 months old but I'm not even sure we'll avail of it as I'm concerned about a false negative.her first laser treatment is scheduled for Age 1 under GA. I would prefer a LA option as we could then avail of more treatments when she's younger but this doesn't seem to be available in Ireland. Some questions I hope you can help with:-

1. At what age will be MRI be conclusive? Our neurologist seemed to suggest Age 1 so perhaps we should defer?

2. Is there anyone out there who has a PWS on the eyelid and forehead who doesn't have SWS. Although it appears to manifest itself in 25% of cases I can't seem to find anyone despite trawling the discussion boards.

3. In the absence of a seizure what other signs should I be looking for in my baby? She is a lovely smiley baby but quite needy and I do have concerns about her fine motor development (she uses left and right equally)

4. Is laser administered in the UK under LA and does anyone have any idea of costs for a private patient( we can't avail of NHS as we live in Ireland)

Thanks so much in advance,

A worried Mum
Reply With Quote
Old 06-05-2013, 09:42 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Hi and welcome!

I will answer the questions that I can, or try to.

1. If I read correctly, the time frame is either 7 months of age, or 12 months of age? If you're talking a difference of 5 months, I would be comfortable with the decision to defer. I do know of patients with SWS who did not develop either glaucoma or experience seizures until adulthood. If you really feel that you can get a more conclusive result at one year of age, I think you should do that. *That's an opinion... as a parent, I would be comfortable with that.

2. I do know of families that we've helped that have pws in that region with no SWS indicated. If no one posts here in the next couple of days, I'll see if I can track someone down for you.

3. Make sure you always, always, always continue with regular eye exams to check for glaucoma.

4. I have no idea about costs in the UK.

As things progress, if you have more questions of a detailed nature, try to write to Dr. Anne Comi. You can reach her via:
http://birthmark.org/experts.php She is usually very prompt with answers.

And, try not to worry, Mum. I know it's hard not to worry ... that's what mothers are programmed to do! But take a deep breath and go play!

That age is so fun, especially when they are all smiley!

Reply With Quote
Old 06-06-2013, 02:20 PM
Mary1978 Mary1978 is offline
Junior Member
Join Date: Jun 2013
Posts: 2

Thank you so much for your reply Missy, I will certainly contact Dr. Comi.
Reply With Quote
Old 07-07-2013, 06:02 AM
kelmel kelmel is offline
Junior Member
Join Date: Aug 2010
Posts: 26

Hi Mary. My son has a PWS that cover most of the middle and lower part of his face. The V2 and V3 regions. However, it also extends partially over his eyelid and to a small portion of his forehead. He had a MRI at 10 months confirming no SWS.

He is now 3 years old and still quite needy. My 5 year old without a PWS or SWS is also rather needy. So don't let that get you down.

Hope this helps.
Reply With Quote
Old 07-10-2013, 08:33 PM
jenjay23 jenjay23 is offline
Junior Member
Join Date: Jul 2013
Posts: 3

Hi Mary,
Our daughter has PWS'ing on eyelid and forehead, it extends on her head, and down most of her body to her feet. She has undergone 3 MRI's so far (she is 9 now) and it has been confirmed no SWS.
Hope this helps
Reply With Quote

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump