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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   So many questions... (http://birthmark.org/board/showthread.php?t=6329)

Lbinns77 05-11-2013 09:05 PM

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:

missy 05-11-2013 10:54 PM

Hi and welcome!

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

Missy

Lbinns77 05-12-2013 12:58 AM

Not at all. Is proplanolol prescribed in Canada do you know?

lf 05-13-2013 05:13 PM

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...

Lbinns77 05-13-2013 05:46 PM

Quote:

Originally Posted by lf (Post 26557)
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?

smurph 05-14-2013 12:51 AM

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

lf 05-14-2013 02:06 PM

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.

hana1st 05-15-2013 02:34 PM

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.

Lbinns77 05-15-2013 03:09 PM

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?

hana1st 05-15-2013 03:24 PM

2 Attachment(s)
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


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