New here

zoesmom06 · #1 10-30-2008, 02:03 AM

I've been viewing this site for quite some time now... I got the site address from a man who approached me about a year ago in the Greenwood *indiana* mall about my daughters birthmark... he had noticed it...and came to talk to me about it.. come to find out..he had a birthmark and had had several surgeries...he was very nice...and reassuring... I lost the paper that had his name written on...so if he's reading this..or anyone who may know him...THANK YOU SO MUCH... I decided to join the discussion group...to try and learn more... my daughter is 2... she has a strawberry memangioma on her ear... it started out like a rash..and then by one month old it was huge... pulling the side of her face outward... it goes partially down her neck... it has gone down quite a bit... but has also slowed down on shrinking... we took her to Riley to make sure it wasn't affecting her hearing..and luckily it's not... we go back soon to compare pics..and size..and discuss surgery... I find it amazing how common these birthmarks are...especially here lately.. 2 other women who had their babies the same time I had Zoe... their children also have hemangiomas...another with a 2 month old has one... Im not sure if Im noticing it more because Im more aware...or if it is truely happening more...

Anyways... I just wanted to introduce myself..and my story... glad to be here... and look forward to talking with you all

missy · #2 10-30-2008, 11:23 AM

Welcome! Glad to have you here!

Missy

Maher2006 · #3 11-02-2008, 12:21 AM

I just found this website while i was researching my daughters hemangioma. She has one located on her right index finger at the first knuckle. When she was born it looked like a freckle. Just a little dark spot. No big deal to use until it started growing and hasn't stopped. She is almost 3 and it is still growing. I have taken her to Doern Becker children's hospital in Portland and from there to a plastic surgeon at OHSU also located in Portland. He has told me on 3 different occasions that it should stop growing. We first took her in at 6 months and he said by one it should stop, by 1 1/2 it was almost double the size so we took her in again. He then told us don't worry lets wait tell two. It really should stop growing by then. Well it didn't. we then took her in again at 2 and he said yes i see its still growing. Lets wait until 3 and see. It should REALLY stop growing by then. Again like I said it still continues to get bigger. It has now started growing back towards her hand and is growing around the the underside of her finger. I am at a loss. I don't know what to do. The H takes up half her tiny little finger and Im afraid if it keeps growing it will take over her whole finger. As of right now it is 1/2 inch long and stands off her finger about a centimeter. It has also gotten really hard. Where as before it was squishy. If there is any one with any advice, I would really appreciate it. I just don't know what to do.

zoesmom06 · #4 11-03-2008, 05:08 PM

zoe's birthmark became very hard right before it started to shrink...so maybe that's good news for you.. I would however go find another doctor... get a second or even third opinion... you are the mother...the customer...and they should do all they can to help comfort you and your little one..
good luck..and thanks for replying

jgoodman0814 · #5 11-03-2008, 05:51 PM

i was told that these have a growth phase from 2 weeks to 1 year, that after a year they are supposed to stop growing. have you talked to a vascular specialist about her birtmark?

Maher2006 · #6 11-04-2008, 12:44 AM

No I havent spoken to any specialists yet. She is scheduled for an appointment tomorrow to have it look at by her regular doctor and I am going to ask to see someone who know more about these types of things. Rather then just taking her back to the same doctor who keeps giving me the same answer. I was told the same thing that the H should only grow for about a year and it has been almost 3 years now and it continues to grow. She told me today that it was hurting her and when I felt it she jerked her hand away saying that hurts mommy. I am just at a loss right now.

jgoodman0814 · #7 11-04-2008, 01:01 PM

try finding a pediatric hemotologist in your area. that was who we went to first. then if you cant find one, check around for a vascular birthmark specialist. where are you from adn maybe we can find someone in your area.

Maher2006 · #8 11-05-2008, 04:28 AM

I live in Vancouver, Washington. I took my daughter in to the doctors today and we are going to see a different Dermatologist. The thing is we have military health care so there are a lot of things they wont cover. But I am going to talk to her doctor about getting her into see someone that specializes in vascular birthmarks. But her Doctor agrees that it is probably time to start some type of treatment since it has been growing for over 2 1/2 years.

jgoodman0814 · #9 11-05-2008, 02:07 PM

click on this link. i got this off this site. they should be able to find you someone close to you. the dr is in seattle. http://www.birthmark.org/physicians_...php#washington

nickbar · #10 11-06-2008, 02:58 PM

Hello,
My name is Corinne and I am the VBF Administrative Director. I happen to live in in Vancouver as well. My son was treated the first year of his life at OHSU/Dorenbecher Childrens as well. I have a specialist in Portland that might be more experienced in treating your child's lesion. I am suspicious that this is not a hemangioma. Was your daughter ever on oral steroids? Please contact me at the address below.

Corinne