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-   -   Hemangioma between eyes at 7 weeks - any input/advice? (http://birthmark.org/board/showthread.php?t=5751)

meganhuddleston 05-23-2012 09:11 PM

Hemangioma between eyes at 7 weeks - any input/advice?
 
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Hi all -

I just recently came across this board - it seems like a great community.

My daughter Stella is 7 weeks. She has a hemangioma between her eyes, probably less than 1/2" from her left eye. It appeared between 1-2 weeks, and has grown fairly consistently since then. It's slightly raised, and appears to be more so as it grows.

We discussed briefly with the pediatrician at our 4 week appt. At the time, I wasn't too concerned about it, and was comfortable with the wait and see approach. As it's grown a bit more (and frankly as I've researched a bit more), I've become more anxious about it and am more interested in seeing a specialist and possibly seeking treatment - especially given how close it is to her eye.

Her next appt with the pediatrician isn't for another 2 weeks. I plan to ask about a referral then (though I may just call before then - as I'm concerned I then may have to wait for weeks to see the ped derm... and all of this may be a bit easier to do while I'm out on mat leave). In the meantime, I'd love any input/advice from folks who have been in similar situations.

--Is this size/type of H something that you think warrants treatment vs wait and see approach? (should be pic attached). If so, what would be the treatment likely recommended?
--Is Timorol (from what I can gather, fewer to no side effects, though potentially less effective?) typically tried before Propanolol? Is that something a pediatrician can prescribe?
--Any recommendations on specialists in Chicago? I know there are a few names listed on the site as well, but if anyone has experience with one, that would be helpful to know.

Thanks so much -- I really appreciate it!

Megan

smurph 05-25-2012 01:13 AM

Hi there! Glad you found this site! It has been so helpful to me over the years. I always think it's a good idea to get the opinion of a specialist when it is close to eyes or any other place that has potential complications. Then at least you are being proactive in finding out what your options are and then you can make your decisions based on that. I'm not too too familiar with today's treatments because those drugs weren't really offered for my daughter 7 years ago (wow! was it really 7 years ago? How can that be possible?) But I'm sure some others will chime in with their thoughts. I think it's a good idea to call for the referral now so at least you can get an appointment in the meantime instead of being pushed back 2 more weeks. Try not to worry too much. It is hard because you don't know how big it will grow and what the final outcome will be, but having been through it myself (three times!), I see how it does all work out ok in the end. Take care!

Shannon

blanca 05-30-2012 06:46 PM

hi megan..your baby is a cutie pie! if i were you, i would call the dr now and ask for a referral. ask for propanolol for treatment. only reason i say this is because it is close to her eye and it can grow and nobody knows how much it can grow.

my daughter had a small hemangioma close to her eye (left)...much closer than your baby, but i remember dr. mathes (from UCSF dermatology, who specializes in hemengiomas) told me that she alsways recommends treatment with propanolol when a hemagioma is on the face, especially, near the eye area.

good luck and let us know what they tell you.

=) blanca

Annasmom116 07-23-2012 02:33 AM

I actually think you should wait and see. My daughter also has a strawberry hemangioma near her eye (it's right on her eyebrow). Hers also had a deep hemangioma that actually grew much bigger than the strawberry. The deep hemangioma grew for about 6 months to about the size of a nickel (maybe bigger). Her pediatrician wanted to wait and see but I was so nervous it would interfere with her eye (it did come very close but never interfered). She is now 18 months and the deep hemangioma is gone and the strawberry is going away as well. I am so glad that we waited to see what it would do and we haven't had to give her any drugs. We barely notice it and I almost never get comments like I did before. I think it is harder on us than it is on them when they are this young.

Brownio3 07-24-2012 05:18 AM

Hi Megan - Our son has a large hemangioma surrounding his eye. We ended up getting referred to Children's Hospital in Columbus. Because it was so close to his eye, they put him on propranolol. It was an intense process for us because he had to be admitted, which is the standard protocol, for a battery of tests to be run on him to make sure he could take the drug. After about 5 days (first 2 days are tests and then the next 3 days they make sure there are no side effects of the medicine), he came home. The medicine is working just fine. From our birth to our first appointment with Children's in Columbus, it was about 2 weeks, and then he was admitted 2 weeks later. Attached is a video we made of our son.

http://www.youtube.com/watch?v=8WIED...&feature=g-upl

You can also friend me on facebook if you want to see more pictures. http://www.facebook.com/john.brown.549

Good luck!


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