Seeking Advice for Eye Hemangioma

[NJW12]

Hello

My son was born on 12-12-08 with a hemangioma on his left cheek, sort of shaped like a fish. It is about the size of 2 quarters set next to each other. I had feared it might interfere with his eyesight, as when you look in the corner of his eye you can see red. After an awful MRI experience last week (took 2 1/2 hours with no contact with the staff, he did not come out of anesthesia fully for hours, we had to take him to ER that night), we found it does go into the orbit of his eye. We have started oral steroids - prednisolone, but I am wondering if anyone knows of any other cases like this and what type of treatment was done. I am not sure what the next steps may be, if surgery could be in his future, or what to expect. I really don't want him on steroids long term if there is a better option out there. I have tried to research propranolol, and it looks like there have been some people very happy with the results. Also, we are looking into seeing a specialist in Chicago, IL. If anyone has any experience with Dr.'s there or can give me any information it would be much appreciated. We want the best care we can find, to save his eyesight and to shrink his hemangioma. Thank you in advance, I am so glad to have found this web site.

[Teagan]

Hi there,

Our daughter was born 11/25/08 with a hemangioma over her left eyelid and going back to her temple. We also discovered this site in searching for some help. In just a few weeks of being here, I've learned so much!

I'd use the "Find a Physician" tool on the site to see if you can find someone. Also I highly recommend the "Ask the Expert" feature. I was able to email Dr. Waner directly, and after seeing some photos of Teagan, he suggested getting her in to see a specialist ASAP for laser therapy.

Today we brought her for her initial consultation with a laser specialist locally, and he recommended using the VBeam laser beginning next week.

I'm new here too, but I'll gladly try to find any answers you might need. Hang in there!

[nickbar]

Dr. Wagner in Chicago would be my first recommendation there.

I would highly recommend contacting Dr.Aaron Fay regarding the h. in the orbit. You can email him direct thru the ask the expert on the home page of this site.

[lo1]

My daughter is now 19months old and a has a large segmental H over her left eyelid and temple area. My daughter has now had 2 MRI scans and both showed that the H is in the orbit area too. She had a steroid injection into the eyelid at 11weeks old and then commenced on oral steroids a month later. Unfortunatly the steroids did not work for my daughter and she had to have surgery at 11months old. The surgery was debulk her eyelid as her vision was being affected (her eye was nearly closed due to her eyelid drooping). The surgery has worked wonders and although the H is still there and has not shown much sign of regression yet, it was necessary to save her sight. My daughter will need more surgery in the future, but for now we are glad we have an otherwise healthy girl.

It is still really early days for you - please follow the advise that the others gave you and seek expert advise.

Lo x

[khubbard]

Without seeing a picture it's hard to say, but it sounds like your child's hemangioma is very similar in location and size to my daughter's. She has a rather large compound hemangioma that starts in the corner of her right eye down onto her cheek stretching to the bridge of her nose and down to her nostril. To our knowledge, it does not effect the orbit (though she has not had an MRI to confirm). She was treated with steroids from the age of 7 weeks to 5 months. The steroids definitely helped stop the growth of the hemangioma and we are glad we followed through with that treatment. However, she has experienced some rebound growth and we are now looking at starting propranolol, as she did suffer from some stomach issues because of the steroids. From what I can tell, the vast majority of parents whose children have been on propranolol have been very pleased with the results, so we are hopeful about her starting this drug. Our daughter's specialist has said that more than likely, cosmetic or plastic surgery will be in her future at some point due to the size of the hemangioma. We are hoping that the steroid and the propranolol will keep the growth to a minimum so that future surgery is as least invasive as possible. Weeding through all the information and options can be overwhelming, especially because every hemangioma is different and there are no "textbook" instructions for treating each one the same way. Good luck in your search!
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