1 month old son has growing Hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-30-2010, 06:42 PM
whaleflower whaleflower is offline
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Unhappy 1 month old son has growing Hemangioma

Hello,

I had twin boys at 34 weeks. One of them developed a hemangioma at about 4 days. It started light and small just above his lip. Hes now just over a month and a half and its now dark red and over his right top lip up into his cheek and almost into his right nostril. The twins were both in the NICU for 3 weeks after they were born and i kept telling the doctors about the birthmark but none of them seemed to be worried about it. Even my family doctor didnt seem worried. But its growing and i want someone who cares to look at it and tell me what can be done. Its also starting to get puffy. Its only been a month and a half since he was born and i'm worried what hes going to look like in another month and a half.

I live in BC Canada if you can tell me who i can call or where to go that would be great help.

Thanks

Amanda
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  #2  
Old 12-31-2010, 12:48 AM
smurph smurph is offline
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This sounds very similar to my daughter's hemangioma, (she's 5 now) almost exactly the same. I'm not sure about who to see for a doctor in Canada, but I'm sure other Canadians will chime in here. But from what I've read on here, I think you should be pretty pro-active in advocating for your son, starting right now.

If you wan to see pics of my daughter's lip please send me an email: hohen13@comast.net. She ended up doing really well, but she did require some treatment. I also have twins too, believe it or not! They are almost 2. They were born at 35 weeks and both have hemangiomas, one very minor and one that was much bigger. So if you'd like to chat about having twins too, email me! Sounds like we have a lot in common!

Shannon
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  #3  
Old 12-31-2010, 06:00 PM
shannonhinz shannonhinz is offline
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Agreed, being pro-active and being informed is essential. I would recommend seeing a pediatric dermatologist to start with. They are more familiar with hemangiomas.
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  #4  
Old 01-01-2011, 01:05 AM
whaleflower whaleflower is offline
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Shannon i cant get the email to go through, is that the correct email?
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  #5  
Old 01-01-2011, 01:06 AM
smurph smurph is offline
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yes, hohen13@comcast.net should be right

If not, you can try me on facebook. I'm on right now actually
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  #6  
Old 01-01-2011, 01:14 AM
smurph smurph is offline
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oops, I think I left out a letter in comcast in my original post. I also wanted to mention that I just read your other post on the twin forum. When we originally got the appt. for my daughter she was about 8 weeks old and her appt. was scheduled one month away. However, when she seemed to be in pain and was getting an ulceration, I called the doc. office and they told me to come in that very day (this was in Boston.) Oh, but I just remembered you are in Canada.. I'm not sure how that works there. Anyways, I'll look for your email. Happy New Year!
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  #7  
Old 01-14-2011, 05:44 AM
mperron mperron is offline
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Hate to be a canadian downer, but my experience with the canadian system is that many doctors take the wait and see approach which isn't always the best course to take in all cases.

In addition, referral take so darn long in Canada, well at least in my province of manitoba. I flew to New York for my son to see a specialist and I was amazed at how fast it is to get in to see specialists. Many are also understanding that us Canadians are paying out of our pockets. The doctors we saw (cardiologist, hemangioma specialist) cut their costs significantly, plus keep in touch with me frequently via email (free of charge).

Because its by his lip and nostril I would say email a specialist (i.e. Dr. Waner in NYC who can be contacted via his website). I'm sure their are other doctors in the states that would be willing to give you a general opinion via email (free of charge).

On a side note, congrats on the twins!

Melanie
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  #8  
Old 01-19-2011, 12:52 AM
nickbar nickbar is offline
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Yes, do contact our ask the experts for an opinion. If you need any help, please let me know. Feel free to contact me via email.
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