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-   -   PWS, Hemangioma or Angel Kisses (http://birthmark.org/board/showthread.php?t=365)

DannysMom 10-14-2003 11:25 PM

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.

nickbar 10-15-2003 06:18 PM

Re:PWS, Hemangioma or Angel Kisses
 
Someone please correct me if I am wrong, but I think that if it is fading it is probably a hemangioma. Strange though that you say it has no tecture to it...flat like a pws. I too have had doctors (not ones we are seeing) think my son has pws when it is clearly a huge hemangioma. When it first started to appear it looked like a pws because it was flat and uniform color. Our ped. was sure it wasn't a pws and that it was a h. and after seeing a specialist...we were told it was in fact a hemangioma. It really did not take long (two weeks) to grow out of control and very much did not respemble a pws anymore. It might be a good idea to post a picture of your son on msn. site http://groups.msn.com/vascularbirthm..._whatsnew.msnw

Someone might be able to tell better by pictures? But, I think you are doing the right thing...continue to see specialists until you get an answer you can trust.

Good luck and let us know how the Nov. appt. goes.

Corinne

DannysMom 10-16-2003 05:10 PM

Re:PWS, Hemangioma or Angel Kisses
 
Corinne,
Thanks for your message- it would appear that our son has 1-2 sypmtoms of PWS and Hemangioma which is why this seems hard to diagnose. His birthmark was present at birth but then faded, then at about 4 months it started getting darker; pink to red. It is not growing like a hemangioma but it is also not getting really dark as in blue or purple like a pws. Even today as he sleeps, it is a deep pink in the same areas. On the VBF home page if you look to the right at the infant's photo in the second row, photo on the left- looking straight on, Danny's marks look like the light ones on the right side of this baby's face and less like the darker PWS that is on the left side.

He has a small hemangioma on his forearm and my sisters each had hemangioms so I know what that looks like. I was told by one pediatrician that he may have a "surface" hemangioma which is a collection of capilliary veins just under the skin's surface where blood tends to pool or collect causing the discoloration. She thinks that the body with absorb these veins over time and the marks will fade. I just can't believe how many different opinions I am getting. We have high expectations with this Nov appointment.

sun4 11-13-2003 09:46 PM

Re:PWS, Hemangioma or Angel Kisses
 
Wow - DannysMom this sounds very similar to what my daughter has and what we are going through. She was born with what we were told were stork bites - one on her eyelid, one under her nose and a round small one on her forehead that was much darker to begin with. Well at age 1, the eye and lip angel kisses are almost faded completely while the forehead one has not. It is a deep pink color and flat and pretty uniform in color as well. When you push on it for a second it "goes away" for a few seconds just like you said your son;s does. This was one of the reasons my ped felt it was an angel kiss and I havent read anywhere where PWS do that same thing?? So I sent her pic into a specialist and he feels it may be a port wine stain and that we should do laser treatment right away. Just wondering what you found out as their birthmark's seem very similar.

Thanks

DannysMom 11-20-2003 03:16 PM

Re:PWS, Hemangioma or Angel Kisses
 
OK. We finally had our "expert" doctor visit. Danny has been "officially" diagnosed with a port wine stain and is scheduled for candela laser treatment in January. We were told that his port wine is a "mild" case in that the discoloration for now, is pink to light red and that it should respond well to the laser treatment. Although I am happy to have a diagnosis I was surprised to hear about the treatment. I was told that I need to apply a topical pain killer to Danny's face about an hour before the proceedure. I was told he would be wrapped in a blanket to keep him from moving around and that he will be held down on a table. His eyes will be covered with special protectors to prevent damage from the laser but he would be awake for the proceedure. The doctor said it will take about 60 seconds to laser the affected areas and I was happy to know it would be a quick process. After that time, I will be able to hold and comfort him.

This doctor came highly recommended and he is only one of two pedicatric dermatologists in our area. He seemed very confident and experienced and had just returned from a conference about treatment for children with port wine stains the day before our appointment.

I am wondering if anyone has had the candela laser done on their young child? My son is 18 months now but will 20 months at the time of the proceedure. I was suprised that they were not going to sedate him in any way. I am concerned that he will move and could cause injury. Any suggesitons on how to make the laser treatment go a little easier?? I am very concerned for him and would like to be in the room with him.

I have his doctor calling me today to address some of these questions but I would really be interested in hearing from patients or parents who have already been through the process. I would appreciate any comments or advice.

THanks!

sun4 11-21-2003 02:56 PM

Re:PWS, Hemangioma or Angel Kisses
 
Danny's Mom,
Well I know we have to wait to see the specialist b4 we know for sure, but after hearing about your son I definately think my daughter's is a PWS too. The one thing I couldnt find anywhere was if a PWS can disappear momentarily when you apply pressure - but seeing as your son's birthmark also does, I think for sure that my daughter also has a PWS. My ped just told me last week she thought it was a hemangioma but my daughter's birthmark is completely flat and has not grown (except a little maybe with her face growing ) but is still flat.
Our specialist also uses that same laser with the "cool" mist. From what I have heard from other Mom;s I have spoken to - it really depends on the ped as to whether they are given a general or not. I spoke to Dr Waner's staff in Arkansas and they said they WOULD give my daughter a general (even though her PWS is dimesized and on her forehead). I have heard from 1 other mom at least that they also give their child a general and wouldnt do it any other way. But Ihave also heard from another Mom who's baby is kept awake and she says it is bad during the procedure but it is very quick and her baby is fine as soon as it is over. Not sure if you have ever been to this site before or not but this message board is also very helpful and many people post pictures of their children's laser surgery results which are very promising.
http://groups.msn.com/vascularbirthmarksupport
Would love to hear how it all goes. good luck with everything!

nickbar 11-24-2003 07:59 PM

Re:PWS, Hemangioma or Angel Kisses
 
Our son has had two laser treatments with a pulse dye laser. He has a hemangioma, but it is pretty flat. They sedated (just enough that he could not move and slept thru the treatment....also they gave my son tylenol for discomfort that might follow after the procedure. I would ask about sedation. It is a lot less scary for a baby than being held down.

Corinne

karenrose 01-12-2004 12:02 AM

Re:PWS, Hemangioma or Angel Kisses
 
my daughter had vbeam lasering, and it hurt--even with shots ahead of time to minimize pain. Emla never did much, either. laser hurts more when it treats a darker or vascular area--doesn't hurt as much if you test a spot on "normal" skin. my daughter has high pain threshold and strong desire to remove PWS, but she was in pain for lasering.


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