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Old 09-14-2010, 12:20 AM
Veronica Veronica is offline
Junior Member
Join Date: Jan 2010
Posts: 2
Default Our story & questions

Our 1 yr old son, Nicholas has a port wine stain on the right side of his face. It starts above his lip and extends to his hairline. His pediatrician immediately referred us to the pediatric ophthalmologist for glaucoma testing and to the pediatric dermatologist for laser treatment. We have Kaiser and fortunately everything has been covered without issues.

He sees the ophthalmologist regularly. So far no signs of glaucoma. He has had 3 laser treatments so far using just the LMX numbing cream. His next laser treatment is next week and he will be under general anesthesia for the first time because this time the doctor will laser the area around his eye, an area she has not done yet. She will place a metal contact under his eyelid, a procedure she recommends after the child is one. We are very nervous about the GA!

Our pediatrician admitted he is not very knowledgeable on pws. He got out a text book and should us a pic. The pattern matches our sons exactly. I feel he covered 2 out of the 3 issues, glaucoma and skin. But he does not address the effect it can have on Nic's brain, the seizures or sturge weber syndrome. I see others on this site write about MRI, CT, EEG's or even ultrasounds. We have not been offered these tests. Once our pediatrician said you don't treat for seizures until after one happens. I agree, I do not want to medicate our son if we do not have to, but should we have him tested for sws?

One last concern. The redness of our port wine stain fluctuates. Somedays you can't even see it! Other times it is red and people ask, "did he fall down?" So, we wonder do port wines stains get darker red as one ages or will the way it is now be the way it always is? Will it get darker and always be present? Or is it a light one that will always come and go?

Thank you for this web site!
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Old 09-14-2010, 01:41 AM
LizH LizH is offline
Join Date: Sep 2009
Posts: 30

Did your general pediatrician or the pediatric dermatologist say they weren't knowledgeable about PWSs? In my experience (I'm 25 with a large PWS on my hand/arm/back) it makes a big difference to meet with a doctor who is very experienced in diagnosing and treating PWSs- as opposed to ones who see them once a month or a few times a year. Specialists are well worth it!

My PWS changes color depending on how warm or cold I am... if I'm very warm it's a light pink, if I get cold it turns red (before the laser treatments it would go purple while cold). I'm not sure if it's the same with babies or not.
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Old 09-14-2010, 02:44 AM
kaykay kaykay is offline
Senior Member
Join Date: May 2006
Posts: 233

first i got to say its great your doctor admitted he doesn't know much but is interest to him you understand.

Yes i agree see a specialist. I have a facial PWS and doctors have asked me what it is. Not their fault. Not something you see every day. You will also feel better knowing you are seeing the experts.

MY PWS has been very dark from birth. i have a baby pic somewhere on this forum if it helps. Been told its much darker when cold.

I think they put me under GA with the few laser treatments i had. i survived LOL woke up once. must of been about 5 or 6 but i knew what was going on and they put me back to sleep. it was just experimental anyway. argo laser.
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Old 09-14-2010, 03:22 AM
rhonda rhonda is offline
Junior Member
Join Date: Jan 2006
Posts: 15

Hi Veronica,
I have a 13 year old son with a facial PWS on the left cheek. He has been in treatment since he was 11 mos. old. He was 2 months old when he had an MRI to rule out Sturge Webber Syndrome. If it involves the opthalmic region of his face, through the eye up onto forehead, that is usually when they do an MRI to rule out SWS. My son does not have SWS and his PW does not involve opthalmic region. If you're concerned than you should ask your Dr. for this test. It's important to have peace of mind. Yes the color will fluctuate due to many factors such as blood pressure, crying, running, fever etc. There are days I barely see it and others where it looks very pronounced. It is important to keep up with the laser treatments as a PW is progressive and can get darker over time. That is why laser treatments are medically necessary and covered under insurance. If you have other questions, please address me offline at rhondageske@gmail.com
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Old 09-21-2010, 02:10 AM
nickbar nickbar is offline
Senior Member
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

where are you located? Please email directly if you would like. (include the message you posted here so I can remember which one.)
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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