New here-11 wk old deep eyelid hemangioma - 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 04-21-2009, 08:54 PM
McKennasMommy McKennasMommy is offline
Junior Member
 
Join Date: Apr 2009
Posts: 3
Default New here-11 wk old deep eyelid hemangioma

I stumbled across this site while researching eyelid hemangiomas. When my daughter was born I noticed she had a purplish color to a very small part of her right eyelid. I didn't really think it was anything, but over the last couple of weeks it has grown into a small lump about the size of a tiny pea. I thought it was a stye and took her to the pediatrician yesterday. He gave us a referral to a pediatric opthamologist & her appt is tomorrow. He said it looks like a deep capillary hemangioma and that it could cause vision problems as it grows. As of now her eyelid is slightly drooping. Does anyone have any experience with this kind of hemangioma? I want to be fully informed before our appointment tomorrow. Thanks!
Reply With Quote
  #2  
Old 04-21-2009, 10:17 PM
lo1 lo1 is offline
Member
 
Join Date: Oct 2007
Location: Scotland, UK
Posts: 31
Default

My daughter is now 21 months old and she too has a H on her upper eyelid, although it is a segmental H with deep parts. Her eyelid drooped and she we have had to patch her good eye daily as her vision has been affected (although improving slightly). She had an injection of steroids in her eyelid and 3 months of oral steroids but it did not shrink the H. My daughter then underwent surgery to debulk the eyelid, which had lifted her eyelid and she can see a lot better. As we live in the UK our doctors prefer to wait and see, which we are ok with at the moment.
Reply With Quote
  #3  
Old 04-21-2009, 10:42 PM
McKennasMommy McKennasMommy is offline
Junior Member
 
Join Date: Apr 2009
Posts: 3
Default

Thanks for responding! When did you start her on steroid treatment? Did she have any side effects?
Reply With Quote
  #4  
Old 04-22-2009, 04:40 PM
megs1082 megs1082 is offline
Junior Member
 
Join Date: Feb 2009
Posts: 19
Default Deep Hemangioma

Hi,

My daughter has 3 deep hemangiomas - 1 parotid (on her cheek by her salivary gland), one on her shoulder and one on her fingertip.

The h on her cheek is the only one that was of real concern as it was growing rapidly (a cm a week) and was still growing even after starting oral steroids at 3 weeks of age. At it's largest, her h was measuring 6 cm across. At 7 weeks, we started on a new treatment (for h's) - Propranolol is a beta blocker that was discovered to work amazingly well on h's, deep h's in particular seem to respond well. My daughter's is improved signifigantly and I wish we had never started the steroids. I am feeding my daughter at the moment or I'd write more. If you are going to end up treating the h, and you may because of it's location, you might consider the propranolol treatment.

I commented in a couple of threads regarding our experience and decision to use it. If you search the forums for propranolol, you may find some of them.
Reply With Quote
  #5  
Old 04-22-2009, 09:39 PM
lo1 lo1 is offline
Member
 
Join Date: Oct 2007
Location: Scotland, UK
Posts: 31
Default

My daughter was on steroids from 11weeks old for 3 months. Only side effect was that she put on more weight and had very chubby cheeks!
Reply With Quote
  #6  
Old 04-23-2009, 12:13 PM
NaturallyMom NaturallyMom is offline
Junior Member
 
Join Date: Apr 2009
Posts: 1
Default

McKennasMommy, I have a 9 week old with what is thought have a deep hemanginoma on the inner eye lid/tear duct. A local ophthalmologist said we could/should 'wait and see' and didn't even recommend an MRI. We are scheduled for one and my baby's doctor and I are in agreement that it is needed. We want to know exactly where the h is growing. Has it been suggested to have an MRI?
Reply With Quote
  #7  
Old 04-23-2009, 08:49 PM
McKennasMommy McKennasMommy is offline
Junior Member
 
Join Date: Apr 2009
Posts: 3
Default

Naturally Mom-
We saw the Opthamologist yesterday who didn't say anything about an MRI. He used the eyelid flipper thing and looked underneath the hemangioma and said it was localized to the eyelid and had not spread. It's right in the middle of her eyelid on the lash line, not in the tear duct. His advice was to wait it out for 6 weeks and to see how it progressed since it has not gotten much bigger than the day we noticed it about 5 weeks ago. He said it's the smallest one he has seen and didn't think it would get much bigger. I'm concerned though because I know how fast these things can spread and grow. I'm also worried that the H. could be more internal than he said it is because all he did was look underneath quickly. I'm going to call her pediatrician tomorrow and talk with him after he's had a chance to speak with the opthamologist.
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

Similar Threads
Thread Thread Starter Forum Replies Last Post
deep hemangioma question... ellybella Help and Resources for Hemangiomas 3 04-16-2009 01:35 AM
Deep Hemangioma Hard to the Touch? megs1082 Help and Resources for Hemangiomas 2 03-04-2009 07:12 PM
Deep hemangioma bsmom Help and Resources for Hemangiomas 3 09-08-2008 02:41 PM
Eyelid Hemangioma - Lots of Questions! emonaco Help and Resources for Hemangiomas 6 02-11-2008 05:20 PM
eye hemangioma in Houston, need physician recommendation cweesmith Help and Resources for Hemangiomas 5 01-24-2008 05:50 PM