3 week old daughter diagnosed with Port Wine Stain

#1 11-20-2006, 12:50 AM

My three week old daughter was diagnosed with a V1 (?) Port Wine Stain a week ago by a pediatric dermatologist here in Toronto. She has a large red patch from just below her left eye right up to behind her hair line covering about 1/4 of her face. It also appears on her nose and lip. We were given an appointment for mid-February to have a follow up and possibly an MRI and glaucoma test. The doctor assures us there is no need to hurry treatment apart from the screening mentioned above.

Our research online has suggested that it's better to treat Port Wine Stains early and in spite of the doctor's assurances we want to know we're giving her the best chance at a good start.

Also, we've noticed her eye is getting swollen (possibly an unrelated eye infection?) and the skin on her eye near her nose is much redder and seems to have small bumps.

Any advice would be most appreciated. Searching the web for answers has caused many sleepless nights.

Thank you,

Eric Liphardt

nickbar · #2 11-20-2006, 02:55 AM

Hello Eric,

If you are at all uncertain about the plan your doctor has, seek another opinion.

It is important that the tests are done. If this is a pws though, I believe the mri should be done with contrast to rule out sturge weber syndrome.

I also am a little puzzled by the small bumps...are they red in color also? What comes to mind is a possible segmental hemangioma vs. a pws. Are you able to post a picture? It might not be a hemangioma...but this early on a segmental hemangioma can look like a pws...but a hemangioma darkens and thickens/spreads and grows very quickly. My son's h. was similar to a pws in the beginning, but by 6 weeks old it was obviously not. Early intervention is important and helpful regardless.

Are you able to post a picture of your daughter? Was the birthmark present at birth?

Corinne

#3 11-20-2006, 12:52 PM

Thanks for the reply.

Tarin's birthmark was noticed right after birth (within 20 minutes) and has become more defined and reddened but apparently hasn't changed size. The bumps are red and look a little like the skin is thickening in the area where the mark is darkest.

I'll post a picture when I get home tonight.

#4 11-21-2006, 12:06 AM

Here is a link to the picture:
http://www.unmapped.ca/tarin_birthmark.jpg

It's most prominent on her lip and on the tear duct to eyebrow area. That's where the skin has the tiny bumps. She als has some bumps on her lower eye lid. Her eye is swollen, she can open it but only when she's really alert.

It's really the change in colour, the bumps and swelling that has us concerned at the moment. We go back to see the dermatologist on Wednesday.

nickbar · #5 11-21-2006, 02:51 AM

the eye is the most important right now. I would highly recommend she sees a pediatric ophthalmolgist. The eye not opening is a problem that needs to be addressed. Was the stain much lighter in color at birth? Do you happen to remember a whitish halo like circle around the lesion area? The bumps developed later...not present at birth? Sorry for all the questions...but these are things the derm. will need to know. It still puzzles me either pws or segmental hemangioma...at this point very hard to tell by the picture.

I would encourage you to email the details and pictures to (maybe mri results too) to Dr. Levitin and Dr. Nelson on ask the expert on the home page of this site for an opinion.

Let me know if I can help you in any way.
Know that it will be ok. No matter which...she will be ok. Modern medicine is amazing.
Corinne

#6 11-21-2006, 01:01 PM

Thanks Corrine. It's sometimes hard to get over the worry and be optimistic about the way things will go.

In response to your questions:
- The stain was lighter at birth, also it was more uniform, whereas now it's darker and more patchy
- There was no whitish halo aroud the lesion
- The bumps were not present at birth, the skin was smooth. It's still smooth in most places

We will be seeing the dermatologist tomorrow and I'll post an update. We certainly have more questions for her than we did last time. We'll also ask to be referred to an ophthalmolgist.

Eric

nickbar · #7 11-21-2006, 04:35 PM

Eric,

I am glad you are seeing the doctor tomorrow and seeking referral for ophthalmologist (pediatric is ideal). I hope I didn;t confuse you with my questions. I am just not 100% sure this is a pws. So far it has similarities to both.

I would ask the doctor about laser treatments (regardless of pws or hemangioma).

Corinne

#8 11-22-2006, 03:01 PM

We've had a new diagnosis from the Dermatologist, I think I'll make a new thread as the title of the original one is now inaccurate. It seems she has PHACE Syndrome and not PWS after all. It was apparent because the birthmark is changing, showing some small bumps. Also she has the VSD which the doctor said was enough to make a diagnosis. We will start to discuss treatment with her tomorrow.

Thank you for helping us out, wouldn't have had the appointment today without your suggestions.

Eric

nickbar · #9 11-22-2006, 05:06 PM

Hello Eric,

I know you didn't want to hear PHACES syndrome yesterday. If you would like to get in to touch with other families, please let me know. There is a new support group site that has wonderful parents there. GREAT information as well.

It is a private group, so you have to apply to join and only members can read the posts/info/pictures.

I'll email you the link.

You daughter will be ok, you've caught this early. Please don't hesitate to contact me any time you need help or questions or comments.

C