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  #1  
Old 06-07-2010, 02:02 AM
snappysara snappysara is offline
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Default Basic information help?

Where can I get information regarding hemangiomas? My daughter appears to have one on her scalp that is growing rapidly, in my opinon. It was more flat and just red at her one month Drs appt - Dr called it a storkbite or hemangioma. I know know it is an H because it is growing. It is maybe the size of a dime now and raised and red. I can also see two pin point size dots adjacent to it on her scalp which I assume will become part of the H - meaning it may get even larger right?
I would love info on how large they grow if they appear after birth. And is it a bad case when it is raised?
Also any referal/names for Ontario Drs (if needed) would be appreciated.
Thanks
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  #2  
Old 06-07-2010, 11:34 AM
missy missy is offline
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HI and welcome!

No one can tell you how large it will get. It may stop growing... it may not.

I believe most people in Ontario go to Sick Kids, but someone will have to come by with a specific recommendation as to Dr. names.

Missy
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  #3  
Old 06-07-2010, 12:17 PM
EFMama EFMama is offline
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I think Sick Kids is the best place - http://www.sickkids.ca/Craniofacial/...mas/index.html

We're seeing a pediatric plastic surgeon at the IWK in Halifax.

Most of the pictures and stories you'll find on the internet in general can get pretty scary - the ones that grow enormous get the most news time. From personal experience and reading other posts on this site, I think most H's are relatively small. Treatment, if any, depends on any number of factors, including size, type (deep, compound, etc), & location (near eyes/ears/etc generally are monitored closely and removed if interfering.)

Canadian doctors are much more likely that their US counterparts to go for the wait and see approach first. If this is fine with you (and it was with us) then there's nothing wrong with that. But if you want it treated and/or removed then you may need to advocate a bit more for your child.

As for how fast they grow, in our experience, with our youngest, there was rapid growth for the first few months followed by steady growth up to 9 months then slow growth to a year, then nothing until involution started around 17 months. With my oldest, his stopped growing around 6 months and is nearly invisible now at 3.5 years.

(As an aside, were you on SH years ago? If so, good to see you again and congrats on the newest addition!!)
__________________
Me - Aimee - Spot on liver
Elliot, 9/20/06 - H on back (nearly gone)
Felix, 7/28/08 - H on forehead (in involution)
Taking the 'wait and see' approach, for now.
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  #4  
Old 06-07-2010, 03:26 PM
sarajustice80 sarajustice80 is offline
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How old is she? I am going through the same exact thing with my 8 week old baby girl. We have an appt with pedi derm today. I am so worried. Hers is raised(hard bump underneath the red top).
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  #5  
Old 06-07-2010, 04:29 PM
snappysara snappysara is offline
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Thanks for your information Aimee, it is helpfull. And yes, funny how the net can be so small, I was/am on SH.
Sara, good luck today, I would love to hear how it went. My DD is 7weeks tomorrow.
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  #6  
Old 06-07-2010, 08:18 PM
concernedmama concernedmama is offline
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You can see photos of my little girl on the thread 20 mos old. Hers started 1 week after birth and looked like a mosquito bite and then became raised and red and by about 3 months became more raised and about the size of a dime....then at about 6-9 months it became about the size it is now. But all of them are different. Hers is starting to involute (notice grey patches in the middle) but that can either take mos or years no one really knows. I don't mean to scare you with her photos just wanted you to know. I wish I knew more about them when she was your baby's age.
Marcie
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  #7  
Old 06-07-2010, 08:24 PM
concernedmama concernedmama is offline
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Ladies if you send your photos to Missy she can help you get them in the right format. She is the adminstrator here....Then others can see them.
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  #8  
Old 06-08-2010, 03:12 AM
newmom newmom is offline
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snappysara - I hate to say it, but you likely won't get much help from doctors in Ontario. We saw a pediatrician who referred us to the Hemagioma clinic at McMaster in Hamilton. The pediatrician told us it would go away and I think she referred us more for my sake than anything. I also researched on my own and went to see a doctor at Sick Kids. In the meantime, I contacted many doctors in the US via e-mail to get their opinion. All of them suggested laser treatment. Not wanting to wait any more, we set off to NYC to start laser treatment. We had our first treatment when my daughter was 4 months old. One week after the first treatment, we had our appointment at Sick Kids. The doctor did not advocate laser treatment at all - basically told us that wait and see was the way to go. The hospital does do laser treatment, but they put all babies to sleep for it and they've only been doing it for a month at the time I saw them - not exactly the best scenario. So we left in tears, second guessing our decision to do the laser treatment. We continued on with it. When we finally had our appt at McMaster, we had 4 laser treatments under our belt (we travel to NYC every 2 weeks). Again at Mac, we were made to feel like bad people for doing what we were doing. And again, I left in tears. I finally asked the doctor at Mac why it was so difficult to get laser treatment in Canada and she explained that it all had to do with government funding - the laser is expensive to purchase and maintain. So we continued on with our journey to the US. We have had 8 treatments so far and probably only have 1-2 left according to our doctor. It has been a long process and travelling to NYC every 2 weeks has not been fun. But I feel blessed that we are able to do this for our daughter. Pretty much everything I read on this forum from a Canadian perspective is that all doctors have taken the wait and see approach. I'm not the only one who has had to look outside of our country for help and I probably won't be the last. I hope you have better luck than I did. What I did learn from this process is that you basically have to go in armed with information to your appointment and insist on a course of treatment if you are not comfortable with the wait and see approach. I apologize for the long e-mail, this is only my experience and maybe other Canadians have some good stories to share with you! I am in no way saying the US health system is better than Canada - they each have their pros and cons, but I have definitely witnessed the cons in the Canadian health system in the last 7 months! My theory is that if something can be done, why not do it rather than risk what could happen if left undone - but I'm not a wait and see type of person. Good luck to you in your journey!
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  #9  
Old 06-08-2010, 12:56 PM
mperron mperron is offline
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I hate to say it as well, but I'm also very dissapointed with the Canadian doctors as well as they have little knowledge of hemangiomas and treatment. I too went to NYC for tx for my son, which is sad we had to go out of country to seek tx considering the amount of taxes we pay here in Canada. Sorry to dash your hopes about tx in Canada, perhaps there are some good doctors out here in Canada.
I think our physicians need more knowledge about hemangiomas and that they should give parents more options of tx choices other than the wait and see approach. This is a message that needs to get out to physicians. I don't know how, but if anyone has suggestions to getting the message out I'm interested.
I emailed a lot of doctors in the United States to get various opinions. The doctors there have been great in responding to my questions. My son saw Dr. Waner in NYC.
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  #10  
Old 06-08-2010, 02:39 PM
sarajustice80 sarajustice80 is offline
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Marcie-what would you of done different if you knew about them very early?
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