Children with Vascular Birthmarks - 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 07-07-2014, 09:34 PM
Kroush Kroush is offline
Junior Member
 
Join Date: Jul 2014
Posts: 11
Default Children with Vascular Birthmarks

Hello, I'm looking for a community to help understand the kind of life and treatment my daughters may end up needing and the support to help them should they need the psychological support regarding their marks.

My eldest daughter is 3.5 and had a strawberry birthmark appear on the top of her head around 2 weeks old. It grew until about a year and has since faded and is covered by hair, so it's not noticeable.

My youngest daughter is 2 weeks old and was born with what we thought was bruising all the way from her left buttox down to her ankle with a width of most of the back of her leg. The bruising coloration faded, and it's now all red. The Pediatrician today said he suspects it was never bruising, but a developing hemangioma. this one worries me because of the size of it, should I expect it to stay relatively the same size and as she grows the mark stay around that size so it's not that noticeable or will it grow with her body and always be about the size of her leg? If that's the case I want to be able to help her not feel self conscious about such a large mark on her body. I'm hoping it does not raise like my eldest daughter's did and at least stays just a red mark. Under the notes, the doctor put: "Vascular birth mark/ vascular stain/ hemangioma" but didn't seem concerned and said he'd have to research a bit due to the size of it and to come back at her 2 month checkup.
Reply With Quote
  #2  
Old 07-08-2014, 12:01 AM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 409
Default

Hi there! I'm glad you found this forum. I, like you, have multiple children with hemangiomas. I don't find that to be too common. Where are you located? Is there a way for you to see a specialist? Just so they can monitor it from an early age and determine if any treatment is needed because it is so large.

Shannon
__________________
VBF Hemangioma Forum Moderator
Reply With Quote
  #3  
Old 07-08-2014, 07:55 PM
Kroush Kroush is offline
Junior Member
 
Join Date: Jul 2014
Posts: 11
Default

Quote:
Originally Posted by smurph View Post
Hi there! I'm glad you found this forum. I, like you, have multiple children with hemangiomas. I don't find that to be too common. Where are you located? Is there a way for you to see a specialist? Just so they can monitor it from an early age and determine if any treatment is needed because it is so large.

Shannon
I'm in Tennessee near Chattanooga/nashville/knoxville. Her pediatrician didn't seem alarmed, but unlike my first daughter, the area this one covers is very large, he mentioned about possibly seeing a dermatologist if he thinks it's something to be worried about but says that it should go away like most hemangiomas. But with it covering as much as it does on her body, I want to nip it in the bud before it becomes an issue if it does.

I know my maternal grandfather had one and my uncle through him had one in the same spot as my eldest daughter, but both of theirs were small like my eldest.



This is a photo of part of it, it extends up her bottom and covers that side of her bottom, with a little spot on the middle and other side. When she was born, it looked like a very large bruise, but has faded to this red with a couple of spots that look a little purple still.

Last edited by Kroush : 07-08-2014 at 08:08 PM.
Reply With Quote
  #4  
Old 07-08-2014, 11:38 PM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 409
Default

I guess I was just wondering if it would be at risk at all for ulceration???? Is it in her diaper area at all? It might be a good idea to take pictures of it on a regular basis to show any changes/growth. I know that was helpful when my girls were at this stage. It was just good to document it. Every hemangioma is different and so it is difficult to predict what will happen. I would just say go with your gut...if you think you want to see a specialist it can't hurt. Good luck! Keep us posted!
Shannon
__________________
VBF Hemangioma Forum Moderator
Reply With Quote
  #5  
Old 07-09-2014, 12:01 AM
Kroush Kroush is offline
Junior Member
 
Join Date: Jul 2014
Posts: 11
Default

It is up her butt bur not on her genitals, thankfully. My husband wants to trust the pediatrician and wait and see, but I'd like to be on top of it and prevent it from growing too much due to the location and size. Would I just seek out a regular dermatologist?

Reply With Quote
  #6  
Old 07-09-2014, 03:27 AM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 409
Default

I am not sure what is the best route to take. I would just say that many pediatricians encourage the wait and see approach which is sometimes certainly a viable option, but at other times it is good to know what a specialist thinks and at least find out possible treatment options. You can still take the wait and see approach- it will just be done under the watchful eye of someone who deals with hemangiomas every day.

As I mentioned, I have multiple children with hemangiomas. We took 2 of our daughters to the same specialist- he recommended pretty aggressive treatment for our daughter's lip hemangioma. But for our other daughter, with an extensive hemangioma on her hand/wrist- he recommended wait and see. Our pediatrician recommended wait and see for both children. This is only my experience and I'm sure your pediatrician is more than trustworthy. It's just that specialists see things through a different lens. The ultimate decision to treat or not is in your hands.

I am not an expert on this so I think I would suggest you email Dr. Robert Rosen or Dr. Levitin (you can find their email info on the Ask the Expert page.) They might be able to give you more information or guidance on what might be best. Also include photos and maybe info on where you live. They may know of some good doctors in your area. Good luck!
Shannon
__________________
VBF Hemangioma Forum Moderator

Last edited by smurph : 07-09-2014 at 03:28 AM. Reason: grammar :)
Reply With Quote
  #7  
Old 07-09-2014, 07:52 PM
ahcarroll ahcarroll is offline
Junior Member
 
Join Date: Jul 2014
Posts: 9
Default

[quote=Kroush;27800]It is up her butt bur not on her genitals, thankfully. My husband wants to trust the pediatrician and wait and see, but I'd like to be on top of it and prevent it from growing too much due to the location and size. Would I just seek out a regular dermatologist?

Hi there! I read your post. I too recently joined this site looking for support for my family. My daughter was a few weeks old when hers started to look like a hemangioma. My pediatrician referred us to a pediatric plastic surgeon because he wasnt sure if it was a PWS or Hemangioma. When we took her for her appointment they took lots of photos and measurements. We spoke to the dr and we all decided to take the wait and see approach. Today she is 17 months old and I am kicking myself for doing that. The hemangioma grew and thickend so fast. She had one laser surgery at 10 months old but it hasnt helped. We are now getting a second opinion from a dermatologist. Each case is different but I wish I wouldve been more proactive with treatment in the beginning. I dont think getting another opinion from a different dr would hurt. Just to put your mind at ease. She is a tiny little thing!! <3 If you ever need to talk, Im here!
Ashley
Reply With Quote
  #8  
Old 07-10-2014, 06:36 AM
Kroush Kroush is offline
Junior Member
 
Join Date: Jul 2014
Posts: 11
Default

Quote:
Originally Posted by smurph View Post
I am not sure what is the best route to take. I would just say that many pediatricians encourage the wait and see approach which is sometimes certainly a viable option, but at other times it is good to know what a specialist thinks and at least find out possible treatment options. You can still take the wait and see approach- it will just be done under the watchful eye of someone who deals with hemangiomas every day.

As I mentioned, I have multiple children with hemangiomas. We took 2 of our daughters to the same specialist- he recommended pretty aggressive treatment for our daughter's lip hemangioma. But for our other daughter, with an extensive hemangioma on her hand/wrist- he recommended wait and see. Our pediatrician recommended wait and see for both children. This is only my experience and I'm sure your pediatrician is more than trustworthy. It's just that specialists see things through a different lens. The ultimate decision to treat or not is in your hands.

I am not an expert on this so I think I would suggest you email Dr. Robert Rosen or Dr. Levitin (you can find their email info on the Ask the Expert page.) They might be able to give you more information or guidance on what might be best. Also include photos and maybe info on where you live. They may know of some good doctors in your area. Good luck!
Shannon
Thank you, I went ahead and sent them both an e-mail. Out of curiosity, was your daughter's wrist mark similar to my daughter's and how has that progressed for her with the wait and see approach?
Reply With Quote
  #9  
Old 07-10-2014, 06:39 AM
Kroush Kroush is offline
Junior Member
 
Join Date: Jul 2014
Posts: 11
Default

[quote=ahcarroll;27804]
Quote:
Originally Posted by Kroush View Post
It is up her butt bur not on her genitals, thankfully. My husband wants to trust the pediatrician and wait and see, but I'd like to be on top of it and prevent it from growing too much due to the location and size. Would I just seek out a regular dermatologist?

Hi there! I read your post. I too recently joined this site looking for support for my family. My daughter was a few weeks old when hers started to look like a hemangioma. My pediatrician referred us to a pediatric plastic surgeon because he wasnt sure if it was a PWS or Hemangioma. When we took her for her appointment they took lots of photos and measurements. We spoke to the dr and we all decided to take the wait and see approach. Today she is 17 months old and I am kicking myself for doing that. The hemangioma grew and thickend so fast. She had one laser surgery at 10 months old but it hasnt helped. We are now getting a second opinion from a dermatologist. Each case is different but I wish I wouldve been more proactive with treatment in the beginning. I dont think getting another opinion from a different dr would hurt. Just to put your mind at ease. She is a tiny little thing!! <3 If you ever need to talk, Im here!
Ashley
Thank you, I am leaning towards seeing a dermatologist, better safe than sorry. She is rather little, she was born at 6lbs 6oz- her big sister was 5lbs 6oz.. we just have little babies!

I'm sorry to hear that the laser surgery doesn't seem to have helped your daughter, hopefully you can find an option for her before too long that is effective.
Reply With Quote
  #10  
Old 07-10-2014, 01:29 PM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 409
Default

Quote:
Originally Posted by Kroush View Post
Thank you, I went ahead and sent them both an e-mail. Out of curiosity, was your daughter's wrist mark similar to my daughter's and how has that progressed for her with the wait and see approach?
My daughter's hand hemangioma was not as large as your daughter's. The best way to explain I think would be to show you these pictures. Hopefully you will be able to see them. Let me know if you can't.

https://www.facebook.com/shannon.hoh...02383&t ype=3

I think the location of the hemangioma definitely is a big factor. My other daughter's lip hemangioma was technically smaller but it was more complex due to the location. I thought for sure they would recommend treatment for my Rachael's hand from the look of it, but the specialist said he expected it to do fine on its own. Goes to show I'm not an expert! hahaha! So it did totally go away on its own in the end...by pretty much 2 years of age. But the lip-not the same at all.

So that's why I think it is difficult to say, and usually the specialist will have the best info because they deal with them so regularly.

Good luck! Stay in touch!
Shannon
__________________
VBF Hemangioma Forum Moderator
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