So many questions... - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 05-11-2013, 10:05 PM
Lbinns77 Lbinns77 is offline
Junior Member
 
Join Date: May 2013
Posts: 4
Default So many questions...

My daughter is almost 6 weeks old and has a hemangioma on her forehead. Of course I have so many questions. Our paediatrician told me it would get bigger and then go away when she's 5-7. I've been looking at all kind of pictures online and scaring myself.... But of course it's all unknown! Is there any chance hers won't get bigger? If we do want to persue treatment options, what should I even ask?
Here's a pic:
Reply With Quote
  #2  
Old 05-11-2013, 11:54 PM
missy missy is online now
Administrator
 
Join Date: Apr 2006
Posts: 1,723
Default

Hi and welcome!

You're right. There's no predicting what will happen. Have you discussed proplanolol with your physician yet?

Missy
Reply With Quote
  #3  
Old 05-12-2013, 01:58 AM
Lbinns77 Lbinns77 is offline
Junior Member
 
Join Date: May 2013
Posts: 4
Default

Not at all. Is proplanolol prescribed in Canada do you know?
Reply With Quote
  #4  
Old 05-13-2013, 06:13 PM
lf lf is offline
Junior Member
 
Join Date: Dec 2012
Posts: 12
Default

My daughter also has one on her forehead. It started to appear at about 5 weeks as a small red mark. Then over the next 5 weeks it grew very fast. I took her to her dr. who said the same thing, it will grow fast and stop growing about a year. I took her to a derm adn they said the same thing, not to worry. I then took her to a specialist who prescibed timilol. I was a against any other treatment because it wasn't in an area that was going to complicate things (eye, mouth, nose). The timilol stopped it pretty much from growing. I used timilol for 4 months, stopped. The H is fading, you can see graying in it. The dr said it is involuting. For reference, she turns 7 months next week. Her hair pretty much covers it. It bothered me in the beginning, now I don't really notice it...
Reply With Quote
  #5  
Old 05-13-2013, 06:46 PM
Lbinns77 Lbinns77 is offline
Junior Member
 
Join Date: May 2013
Posts: 4
Default

Quote:
Originally Posted by lf View Post
My daughter also has one on her forehead. It started to appear at about 5 weeks as a small red mark. Then over the next 5 weeks it grew very fast. I took her to her dr. who said the same thing, it will grow fast and stop growing about a year. I took her to a derm adn they said the same thing, not to worry. I then took her to a specialist who prescibed timilol. I was a against any other treatment because it wasn't in an area that was going to complicate things (eye, mouth, nose). The timilol stopped it pretty much from growing. I used timilol for 4 months, stopped. The H is fading, you can see graying in it. The dr said it is involuting. For reference, she turns 7 months next week. Her hair pretty much covers it. It bothered me in the beginning, now I don't really notice it...

Where are you located? How did you find the specialist?
Reply With Quote
  #6  
Old 05-14-2013, 01:51 AM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 413
Default

I'm not sure how things work in Canada compared to the US but I think it would be helpful to see a specialist to see what options are offered for treatment-timilol? propanolol? You can also wait to see how much it grows over the next few weeks/months and take photos frequently...like maybe once a week to show any changes. I think this is helpful to show the doctors and also for you to see yourself. Since you are with her all the time sometimes it's harder to notice. Hopefully someone will chime in here from Canada and they might be able to give you some info specific to that. Try not to look at too many pictures online....they often show the most extreme cases...easy to say, hard to do! I used to do that all the time too and scare myself silly!!!! But most of the time our worries turn out to be much worse than the reality. Where in Canada are you located?
Shannon
__________________
VBF Hemangioma Forum Moderator
Reply With Quote
  #7  
Old 05-14-2013, 03:06 PM
lf lf is offline
Junior Member
 
Join Date: Dec 2012
Posts: 12
Default

I am located in Massachusetts and went to Boston children's hospital where they have a number of specialists. I also looked up H on the internet when hers was first growing. They do only show the worst ones and I was scared silly. it drove me nuts. I am happy to say, my daughter's looks nothing like that. I also took pictures on a weekly basis to see how it changed.

I should also note, that my daughter had a deeo one also underneath the surfical one. The deep one has a blue tint and was larger large underneath, but has significantly gone done where it is only a little larger than the surfical.

I have not figured out how to post pictures, anyone can give me pointers, I will post some.
Reply With Quote
  #8  
Old 05-15-2013, 03:34 PM
hana1st hana1st is offline
Junior Member
 
Join Date: Jul 2012
Posts: 9
Default

Hi, I'm from toronto and My son sees dr.pope at Sick kids hospital. She has contributed to ground breaking research on Hemangiomas. My son is currently on Nadolol (only available in canada) and it works wonders. It's in the same family as propranolol but less side effects. My son is 11 months and he has been on medication since he was about 8 weeks old. His hemangioma on his face is 90% gone.
Reply With Quote
  #9  
Old 05-15-2013, 04:09 PM
Lbinns77 Lbinns77 is offline
Junior Member
 
Join Date: May 2013
Posts: 4
Default

Hi there... Thanks for the response! - how did you get a referral to dr. Pope? And how big was your sons H before getting treatment?
Reply With Quote
  #10  
Old 05-15-2013, 04:24 PM
hana1st hana1st is offline
Junior Member
 
Join Date: Jul 2012
Posts: 9
Default

I got lucky and went to see a pediatrician who happened to work at sick kids. But if you ask your family doctor that you want to see her specifically they can for sure send your referral.

I had to wait 5 weeks for my appt. Thats why the hemangioma grew as big it did.

here is a pic when he first started.
and it now
Attached Images
File Type: jpg IMG_0426 (2).jpg (40.6 KB, 0 views)
File Type: jpg photo (21).jpg (78.2 KB, 0 views)
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump