8 week old with compound Hemangioma on top of head - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-11-2010, 03:53 PM
KatieG KatieG is offline
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Default 8 week old with compound Hemangioma on top of head

Hello! I joined this forum in hopes that people can help provide some information for me. My daughter Madeline is 8 weeks old. About a week after birth I noticed a reddish mark right in front of her soft spot. It continued to grow and became slightly raised by her 4 week birthday. From weeks 4-7 it has tripled in size and I believe it is compound since there is some red on top but most of it is bluish and under the skin. It is currently the size of a quarter and is maybe raised 1/2 inch on top of her head so far.

My pediatrician is telling us to wait it out. However, it is growing so rapidly that I am really no longer comfortable with this considering its right on top of her head. I am moving to NY in a couple of weeks so am looking for resources in the Long Island or NYC area.

Can anyone offer any insight? From what I am reading, I know she is still in the growth stage. Is that a good time to intervene? I would appreciate any information I can get and would love to hear similar stories.

Thanks!
Katie
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Old 06-11-2010, 09:42 PM
concernedmama concernedmama is offline
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My little girl is 20 mos old and has a compound hem on her hairline, dead center in the middle of the forehead. It is about the size of a cherry and is starting to involute (greying in the center) I have combed many websites as well as this one. It sounds like Dr. Milton Waner who is NY is the best in the country. I sent him a photo of my little girl and he responded right away. Many patients on this site have used him and if we lived on the East Coast I would take my little one to him in a heartbeat. You can see photos of my little girl if you look under the thread for help for 20 mos old. If you want to see what it looks like in an older baby.
Hope that helps...good luck.
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Old 06-14-2010, 03:22 AM
jenny722 jenny722 is offline
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I have a three year old niece who was treated by Dr. Barry Zide in NY. I know this makes her a bit older than your daughter, but maybe worth checking out. The transformation in my niece has been remarkable. This is his website: http://hemangioma.com/gallery.html

Hope this helps.
Jenny
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Old 06-22-2010, 06:25 PM
KatieG KatieG is offline
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I emailed her photos to Dr. Waner in NY and he emailed me back in less than 24 hours and had me call him personally. He was VERY nice and explained things very well. We have an appt. with him on July 20th.
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Old 06-22-2010, 11:03 PM
missy missy is offline
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Keep us updated after your appointment. I'll be interested to hear what options he gives.

Missy
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  #6  
Old 06-23-2010, 04:15 AM
KatieG KatieG is offline
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Quote:
Originally Posted by missy View Post
Keep us updated after your appointment. I'll be interested to hear what options he gives.

Missy
He told me based on her photos that her H will possibly triple in size (its already the size of a silver dollar I would say). We have the option of drug therapy or surgery. However, he was explaining that the drug therapy does not work well on Focal Hemangiomas, which is what she has. He said surgery would be very easy, but I am hesitant since its on her scalp right in front of her soft spot. I am not super comfortable with waiting it out though seeing how big it is already and she is 2.5 months old. I am eager to see what he says in person.

Also, does anyone know how insurance works with these Dr's? I know he is out of network.
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Old 06-23-2010, 03:41 PM
missy missy is offline
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I would take his opinion as gospel.

Write to the insurance expert, Basia at
http://birthmark.org/experts.php

She'll answer your insurance questions.

Missy
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Old 06-24-2010, 12:25 AM
KatieG KatieG is offline
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Quote:
Originally Posted by missy View Post
I would take his opinion as gospel.

Write to the insurance expert, Basia at
http://birthmark.org/experts.php

She'll answer your insurance questions.

Missy
Thanks! I will email her!

I found Dr. Waner through a friend here where I live. Her daughter has had several surgeries by him and looks amazing! I am looking forward to meeting with him.
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  #9  
Old 06-24-2010, 08:21 PM
mperron mperron is offline
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I agree with Missy, the part of taking Dr. Waner's opinion as "gospel." I live in Canada and initially had the misperception that American doctors treat healthcare as a business and are out for $$ (misperception fueled by Canadian media). This is so not the case with Dr. Waner. He waved his consultation fee for us, and put my son on propranolol which prevented him from needing surgery. You can contact his office and speak to 'Maria Torres' and she may be able to assist you with insurance questions. She's very helpful. You can find the number on his website.

Good luck and congrats on your little one!!!
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