New here-11 wk old deep eyelid hemangioma

McKennasMommy · #1 04-21-2009, 07:54 PM

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!

lo1 · #2 04-21-2009, 09:17 PM

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.

McKennasMommy · #3 04-21-2009, 09:42 PM

Thanks for responding! When did you start her on steroid treatment? Did she have any side effects?

megs1082 · #4 04-22-2009, 03:40 PM

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.

lo1 · #5 04-22-2009, 08:39 PM

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!

NaturallyMom · #6 04-23-2009, 11:13 AM

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?

McKennasMommy · #7 04-23-2009, 07:49 PM

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.