Vascular Birthmarks Foundation Forum - View Single Post - Eyelid H
Thread: Eyelid H
View Single Post
Old 03-16-2008, 07:06 PM
cweesmith cweesmith is offline
Junior Member
Join Date: Dec 2007
Location: Houston, TX
Posts: 2

My daughter was diagnosed the same way, same age. We and the pedi. thought it was a blocked tear duct, but I made an appt. w/ a pedi.opthm. regardless who immediately thought it was a hemangioma. By MRI it was 2 cm at it's longest length, and located at the inner corner near her nose and actually was deep enough to go back behind her eyeball some too. She had slight lateral displacement of the eyeball but after 2 specialists eval, thought her vision was not compromised. With the location being so deep, it was felt that she was not a good candidate for injectable steroids. So at 8 weeks we embarked on oral steroids. In the scheme of things, I consider us fortunate. The only side effect being some reflux which has been easily treated with Zantac. Oh, and the weight gain, but it hasn't been too severe and that is just temporary. She is now 5 1/2 months old and from my visual assessment looks great. We have been slowly tapering down the steroid dose over the past few months and will finish in May. We pray for no rebound growth now.

Always follow your gut. If you feel like something is wrong, call the doctor.

Get an opinion from a H specialist. Often a dermatologist and a opthamologist team will treat and monitor together (steriods). Find a Hemangioma Clinic for an opinion.

If she gets put on oral steroids, ask for reflux medication. And...remember that it's dosed on weight so as she grows, you might need to have the doc increase the relux med. dose.

In our experience with this deep orbital H, response is measured mostly by YOU. Of course the doctor makes an assessment too, but your reports are a large part of it. So like someone else said, take weekly pics with a standard object like a coin for comparison. It's been a great tool for us to see her response to treatment.

Keep a notebook of important events....questions you asked and answers, doctor recommendations, etc. Believe me, you'll get home and think..."what did he say about that?" Also, I printed out a calendar and made notes on it solely about her med doses and doctor appts.

Educate people about her need for extra cleanliness while on high dose steroids. Encourage hand washing and keep her away from sick people.

I know we are lucky, it could be worse. That is why I wanted to share. When you strat this journey it can be very scary...for many reasons. Don't lose will get better. Some of us have tougher roads than others. You can have the same age baby, same size and type H, same location, but widely different roads. But remember there are good case scenarios too, not just bad ones. Keep faith.

I was very scared when she was first diagnosed, and this board helped me. It also helped seeing pics of other kids progress. It also prepared me. If you are interested please e-mail me privately.

Houston, TX
Reply With Quote