Advice about hemangioma on lip - 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 02-25-2013, 06:55 PM
amiabledwarf amiabledwarf is offline
Junior Member
 
Join Date: Feb 2013
Posts: 3
Unhappy Advice about hemangioma on lip

Hi. I have recently come across this forum when doing some research about hemangiomas. Although I realise it is a US based site there is nothing similar in the UK and I really need some advice.

My daughter Teigan is 5 weeks old today. She was born full term and is a perfectly healthy little girl. However when she was a couple of weeks old we noticed that she had developed a small red mark on her lower lip. At first we thought it was a feeding blister but when it started growing very quickly we soon realised that it was a birthmark.

Due to it's position we are very concerned that it might grow very large and cause problems with feeding or become ulcerated and painful.

We have just been to see our doctor about it who quite honestly was very dismissive and just told us to leave it alone and try not to worry as it will eventually go away on it's own, albeit this could take years and it might become very large and unsightly before then. When I asked about possible treatment he basically told me that there was nothing that could be done and he will only refer us to a dermatologist if and when the hemangioma becomes ulcerated or Teigan struggles to feed. I suggested propranolol and he had not even heard of it!

I am not particularly happy with the advice we've been given. After reading this forum it is clear that early intervention can be very helpful. I know that Teigan's hemangioma is small now but it won't be like this in a few months and I don't want to ignore it and then wish I had done more further down the line.

Has anyone got any advice for what I should do? I have uploaded some pics to show what it is like currently. Thanks in advance.

'A concerned dad'
Attached Images
File Type: jpg IMG_0457[1].JPG (44.2 KB, 0 views)
File Type: jpg IMG_0458[1].JPG (37.4 KB, 0 views)
File Type: jpg IMG_0459[1].JPG (83.4 KB, 0 views)

Last edited by amiabledwarf : 02-25-2013 at 07:11 PM. Reason: upload photos
Reply With Quote
  #2  
Old 02-26-2013, 02:03 AM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 414
Default

Hi there,
Your daughter is adorable. I think you have hit upon something that happens a lot, even here in the US. The same thing happened to us about 8 years ago. In many cases, if you leave the hemangioma alone, it will often just resolve itself over the course of a few years. My daughter's hand/wrist hemangioma went away totally on its own. But lips do tend to be a little more at risk for issues. My other daughter has a lip hemangioma and she did need oral steroids as well as surgery and laser. But hers was also a lot bigger than what your daughter's looks like right now.

So anyway, perhaps you could keep taking pictures on a weekly basis and keep a close eye out for problems/ulcerations. It seems like your doctor may not be aware of some of the newer treatment options available these days..so watch it closely and then maybe you can ask for a referral at the first sign of a problem. Your pictures can help to document any changes. I'm not sure if you are able to get a second opinion, but maybe that can be an option too?

If you look above on the link that says "Resources" you can go to "Find a Doctor " and it lists some doctors in England that might be a resource for you, although I'm not sure if they are close-by where you live.

Good luck! Stay in touch with how it goes!

Shannon
__________________
VBF Hemangioma Forum Moderator
Reply With Quote
  #3  
Old 02-26-2013, 09:51 AM
amiabledwarf amiabledwarf is offline
Junior Member
 
Join Date: Feb 2013
Posts: 3
Default

Thank you for your reply Shannon.

Reading your posts and Facebook profile has provided me some reassurance that no matter how bad Teigan's birthmark becomes there is something that can be done about it. I would just prefer not to let it get too bad in the first place if I can help it. I was bullied at school so I know first hand how cruel people can be. I will do everything I can to prevent Teigan going through the same thing.

It would appear that most doctors here in the UK are under educated in relation to the newer treatments available now and are therefore relying on older guidelines. Whilst I don't want to rush into any unneccessary treatment I do not want to wait until the birthmark becomes ulcerated or Teigan struggles to feed.

I will certainly take your advice to take weekly photos. We are due to see the doctor again next week for my partner's 6 week check up so we will ask for a second opinion then and maybe suggest a referral to a specialist (there is one about 50 miles from where we live).

With any luck I am worrying needlessly and everything will sort itself out!

Jason
Reply With Quote
  #4  
Old 02-26-2013, 01:28 PM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 414
Default

Jason,
It is so hard to have to wait to see what happens. I have been in that situation and it is so stressful. I waited too long because I was listening to our pediatrician (who was much like yours it seems) and I didn't know anything about hemangiomas at the time. That's why I love this site because it gives important information to parents. It was so helpful to me. It seems that you have educated yourself on what the newer information is on hemangiomas and that is good because you can advocate for her if needed. Since you are with her every day you will know if things start to change and you will be ready to push for that referral. You are doing a good job. Enjoy your new little baby! Those early months go by so fast!!

Shannon
__________________
VBF Hemangioma Forum Moderator
Reply With Quote
  #5  
Old 03-01-2013, 12:31 AM
kitkat0330 kitkat0330 is offline
Junior Member
 
Join Date: Oct 2012
Posts: 2
Default

My daughter just turned 6 months old and has a hemangioma on her top lip. We have been treating it with laser every 2-3 weeks since she's 6 weeks old. The red is barely noticeable now. Her pediatrician told us to take the wait and see approach but I sought an expert opinion, that being Dr. Levitin who recommended laser surgery. We are so happy with our decision.
Reply With Quote
  #6  
Old 03-08-2013, 08:23 AM
amiabledwarf amiabledwarf is offline
Junior Member
 
Join Date: Feb 2013
Posts: 3
Default

Well we managed to get a second opinion yesterday during Teigan's 6 week check up. Thankfully the doctor was far more sympathetic and agreed with our views and has referred us to a paediatric dermatologist.

We are now just waiting for an appointment. At least we have made some progress!
Reply With Quote
  #7  
Old 03-08-2013, 04:35 PM
smurph smurph is offline
Senior Member
 
Join Date: Jan 2007
Posts: 414
Default

Great news!
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