My 6 week old just diagnosed with a Hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-16-2011, 07:26 PM
Sherik11 Sherik11 is offline
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Default My 6 week old just diagnosed with a Hemangioma

Hi Everyone,

I am new to this site as of today.
My 6 week old was just diagnosed with a Hemangioma on his upper lip 2 days ago. It is still very small about the size of a pencil tip. I noticed it a little over a week ago and thought he had pinched or scratched himself. It has not seemed to change or get any bigger over the past week.
I have been researching Hemangiomas for the past 2 days and have been driving myself crazy. I am very nervous that it will begin to grow larger and start causing my son problems.
Our pediatritian did not seem to be very concerned and did not provide me with any information about Hemangiomas. She brushed it off as nothing to worry/concern myself with. But being a first time mother, of course I am going to worry, I proceeded to preform a Google search where I only freaked myself out.
I want to know when the best time to seek treatment is? I really do not want to allow it to grow.
I would love all advice, suggestions and opinions!
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  #2  
Old 11-17-2011, 12:50 AM
missy missy is offline
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Hi and welcome!

If you'd like to go see someone who specializes in vascular birthmarks, let us know where you are located and we'll see if we can get the name of a physician that knows about hemangiomas.

I *think* I saw your name in the database, so I suspect you've already asked one of the experts, but if not, here's the link: http://birthmark.org/experts.php

Other parents will be in soon, but you'll get more feedback if you post a photo. If you find that a pic is too large or won't post for some reason, mail it to contact@birthmark.org as an attachment and I'll take care of that for you.

In the meantime, try not to panic. It will all be OK. Go smell his head. I love that new-baby-head smell. They should bottle that!

Missy
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  #3  
Old 11-17-2011, 03:27 AM
smurph smurph is offline
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Hi! I was just reading your post and I got goosebumps because it reminded me of my first post here about 6 years ago. My daughter has an upper lip hemangioma too. All I can say is you have come to the right place for information and support! This website has been such an amazing resource for me over the years.

I agree with Missy. I think the best thing to do is to see a vascular birthmark specialist even if it doesn't seem to be growing right now. That way you can have a specialist monitoring it from early on and you can get more information of your options. There's definitely the possibility that it will be totally fine and it will go away on its own, but lips can also be very tricky...trickier than other locations for hemangiomas and that's why I think a specialist's opinion is important.

Our pediatrician said the same thing to us, and within a few weeks our daughter's hemangioma ulcerated. Her pedi. just kept insisting that the hemangioma would not hurt her and to just put vaseline on it. Can you imagine how horrified we were when we did see a specialist and found out that our daughter's lip was ulcerated and she was screaming from pain, not from colic!!!! She ended up having surgery last year to correct the scarring from the ulceration. In my opinion there seems to be a disconnect out there between the pediatricians and specialists, especially for the hemangiomas that are more likely to warrant treatment.

I don't want to alarm you though...even though we had a couple bumps in the road, my daughter is doing so great now! You can barely tell she even has a hemangioma. One of my other daughters has a hemangioma too...hers needed no treatment at all and is almost totally gone (she is 2) so it is possible!

I think the most important things are go see a specialist, email one of the expert doctors here to get their opinion, and then do what you think is best...wait it out, treat....there is really no right or wrong answer.

And most importantly, try to stop googling!!!! ha! ha! I'm laughing because I did the same exact thing myself. I think as mothers, we want to find out everything that we can, but we end up scaring the heck out of ourselves with worst-case scenario pictures you find on the internet!!! If you want, I can send you some pictures of my daughter. They are not "worst case scenario" pictures...kind of middle of the road. Just let me know!

Please post a picture if you can...send it to Missy...she's the queen of picture posting! Hang in there. There is hope! I survived and you guys will too! Sending a hug your way!

Shannon
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  #4  
Old 11-17-2011, 04:37 PM
Sherik11 Sherik11 is offline
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Missy and Shannon,

Thank you so much for your support and suggestions! I truly am driving myself crazy about this and I really needed to speak with people who have had to deal with this and have made it through it.

Shannon, knowing that your daughter had something similar to Colton and is now doing fine really makes me feel a lot better! I would love it if you were willing to share some pictures of your daughter with me. I was a wreck yesterday looking at the pictures you find using Google and could use some perspective. I just can't imagine that happening to my beautiful little boy.

It is very upsetting to know that pediatricians are not educated as much as they should be about Hemangiomas. I would think that anyone, especially a children's doctor would have voiced a little more concern with your daughters ulceration other then to put vaseline on it... I'm very sorry you had to go through that.

I did email one of the experts on here yesterday, where does their reply get sent? Will it alert me when I log on?

We are living in Ambler, PA about 30 min or so outside of Philadelphia and are very interested in speaking with a specialist. Having spoken with my pediatrician and walking out of the office so uninformed makes me want to attack this head on.

Is it possible to have the Hemangioma removed before it gets any bigger? What is the protocol on that? I may just be being naive but I would think that removing it before it causes a problem would be ideal especially this day in age.

I am so happy I found this site, knowing there are other families out there dealing with the same thing is very reassuring!


- Sheri

Last edited by Sherik11 : 11-17-2011 at 04:58 PM.
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  #5  
Old 11-17-2011, 11:00 PM
missy missy is offline
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YAY! I finally get to be queen of something!

The expert you emailed will either email you back directly, or send it to me to send on to you. Let me know if you don't hear anything in a couple of days, but our docs are GREAT about getting back in touch.

Attached is Colton. OMG, he's soooo cute!!!

Missy
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  #6  
Old 11-18-2011, 02:31 AM
smurph smurph is offline
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Hi Sheri! He is so adorable.
Here's the link to the album of my daughter, Faith. At 6 weeks old, her hemangioma was already a lot bigger than your son's so that may be a good sign that it won't get as big as my daughter's. I'm not sure though. Hers grew pretty quickly right from the beginning. It's a Facebook album but you should be able to see all the pictures. I have also written the details about her treatment there as well. I'll also put my daughter, Rachael's album so you can see how hers grew and then totally went away on its own.

http://www.facebook.com/media/set/?s...l=a 18fd285c7

http://www.facebook.com/media/set/?s...0902383&type=1

I totally know how you are feeling. I freaked myself out for years. You are at the hardest part because you can't predict what is going to happen...but I think you are in pretty good shape. Keep in touch! Let us know what happens if/when you go to the specialist! Let me know if you have a problem with the pictures.

Shannon

Last edited by smurph : 11-18-2011 at 02:32 AM. Reason: grammar!
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  #7  
Old 11-20-2011, 01:05 AM
Sherik11 Sherik11 is offline
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Shannon,

Thank you so much for sharing the pictures of your daughter, she is beautiful, its amazing you can hardly tell that she had a hemangioma. I was unable to see Rachael's album for some reason.
I am beginning to calm down after joining this site and speaking to different people about it.
I found out today that one of my good friends younger sister had one growing up and it went away on its own when she was 7. I also found out that my aunts niece had one on her eye that was removed when she was very young. Its nice to know that their are people directly around me that have had to deal with the same thing.
Dr Levitin emailed me today and suggested speaking to a doctor about the laser treatment because it is still so small he said it should be very effective. I am hoping this will be an option for us and we will be able to nip it in bud as soon as possible.
I will keep you posted on our progress and journey, hopefully it will be a short one : )

-Sheri
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  #8  
Old 11-20-2011, 01:18 AM
smurph smurph is offline
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Glad to hear you are feeling better. Here's Rachael's album again...I switched the privacy settings so hopefully it will work now.

http://www.facebook.com/media/set/?s...l=1 b4cbdd436

Keep us posted!
Shannon
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  #9  
Old 11-20-2011, 11:56 AM
missy missy is offline
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Dr. Levitin is pretty awesome, is he not?

Glad you're feeling better! Keep in touch and let us know how things go.

Missy
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  #10  
Old 11-21-2011, 01:11 AM
Sherik11 Sherik11 is offline
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Shannon your girls are beautiful!! I really appreciate you sharing your photos with me. Its amazing how Rachael's hemangioma went away on its own. In the last few pictures you can hardly see it.

I will keep you both posted as we find out more about Colton's situation. I truly appreciate your support and advise : )

- Sheri and Colton
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