Orbital hemangioma

Texas75 · #1 05-09-2011, 07:15 AM

My 15 month old daughter was diagnosed with an orbital hemangioma at 7 weeks via a MRI. We have a team of 11 specialists that treat her as in all our research throughout the last year we have found no doctors, with the exception of one orbital specialist, who has seen such a case. Are there any other fellow cases on the forum? She has been treated with propanolol since 8 weeks and we have had great success with the treatment but are still seeking fellow cases. Thank you!

missy · #2 05-09-2011, 11:06 AM

Hi and welcome!

There are a couple of parents here who struggled with orbital hemangioma, but it's been a while since they were active. If you write to Dr Fay via our Ask the Expert form, he might be able to direct you to some other families. http://birthmark.org/experts.php

Missy

Texas75 · #3 05-09-2011, 01:51 PM

Missy-thank you. I just attempted to send Dr. Fay a message but it appears his form is closed. Is he still active with the site? Thank you again.

missy · #4 05-09-2011, 08:06 PM

Hi,

His form should be open... you have to login with the username and password that you use here. If for some reason it isn't working right, send your question to contact@birthmark.org and I will forward it to him. You may attach a photo, if you think it might help... although I gathered it might not help in your case.

Missy

nickbar · #5 05-12-2011, 12:45 AM

I f you would like, email me and I can forward a message to him.

C