PWS, Hemangioma or Angel Kisses - Vascular Birthmarks Foundation Forum
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Old 10-14-2003, 11:25 PM
DannysMom
 
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Default PWS, Hemangioma or Angel Kisses

:-\
I am perplexed. My son is 17 months old. When he was born, he had pinkish marks under his left eye, a little on his cheek along his nose and a spot on his upper lip.
When the hosptial pediatrician looked at him she suggested he get his eye tested to make sure there was no pressure on it. She said it was a birth mark but did not indicate what kind (was too early to tell). We had his eye tested the next day by a pediatric opthamologist and he was fine. His birthmark was not blue or purple it was a light pink color and it was noticable although tough to distinguis between regular bruising that may have occured during delivery.

When he was 3 months old it actually looked like it was begining to fade. For the first 6 months of his life, his regular pediatrician kept saying he had "angel kisses" that would eventually fade completely. He said if they were not gone by 12 months they would examine it further. At his yr check-up the marks under his left eyelid and on his lip began to get much darker. The doctor was reluctant to make a diagnosis.

At 14 months another pediatrician in the practice really sat down to look at him. I was insisting that some kind of diagnosis be made. She pushed on his skin and the it became white, like the blood was being pushed out of the veins. When released, they filled back up within 3 seconds. She said he had a hemangioma, a surface hemangioma and that the extra blood vessels would eventually be absorbed by the body and fade in time.

When I took Danny's brother to his one month check up, another pediatrician in that same practice happened to look at Danny and just flat out said, hey, he has a port wine stain. I was shocked he could be so callous about it and at the same timeso sure of his diagnosis. I keep wanting to believe it will fade. I had marks very much like what he has when I was an infant and my mother said they were gone by the time I was two years old. I still have some on the back of my neck.

Danny is going on 18 months and today the marks are still a deep pink or red. His skin is smooth to touch and the area on and below the skin is not rough. It does not seem to be getting darker.

I have seen a pediatric dermatolgist who said he "thought it looked like at PWS" . I also took him to see a facial plastic surgeon who does laser treatments and he told me it was a "hemangioma in the healing stage" and too leave it alone.

Frustrated, I asked his pediatrician to refer me to the top pediatric dermatologist in the area. We are seeing this doctor in Nov with high expectations that he make a legitimate, knowledable, informed diagnosis so my husband and I can make the right choice about possible treatments.

Sorry for the long post. I am just wondering if anyone else has experienced the same problem with diagnosis or if they have a child with similar birthmarks.
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