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-   -   eye hemangioma in Houston, need physician recommendation (http://birthmark.org/board/showthread.php?t=2691)

cweesmith 12-19-2007 01:46 PM

eye hemangioma in Houston, need physician recommendation
 
Hello,

My daughter Kate is now 10 weeks old and has been diagnosed with a hemangioma in the upper and inner eyelid. We noticed that the affected eye had a different shape around 6 wks, and she had 2 eye infections in the eye. Then we noticed that we actually felt a lump and took her to a pediatric opthamologist at Texas Children's Hospital here in Houston. She did an MRI of her head/brain last week to confirm that it is a hemangioma. From what I am reading it must be a deep hemangioma because her upper eyelid is slightly puffy but still flesh colored with a bruised look. The pedi. optho. scheduled us to see a dermatologist? who she says will start oral steroids.

Needless to say we are very scared. We have an appt. with Dr. Levy who is a dermatologist at TCH, but found out that he is leaving the area. Does anyone have a recommendation on another physician with experience? Maybe we should just travel to see Dr. Fay?

This discussion board and website has been a blessing to me. I just found it last night and read for hours and I already feel close to everyone who is posting. Thank you

Beth

jlt71079 12-19-2007 03:42 PM

I don't know of anyone who is local for you but we did use Dr. Fay. We sent them some pictures initially and he told us to come see him. We had to travel from Florida but it was 100% worth it! He removed Brett's H because it was growing so fast and was starting to move across the eye. Now it is like it never happened. I am thankful everyday that I kept pushing for more information besides what I got from my local pedi & pedi opto. They just didn't know enough about it for me to feel comfortable. You just have to follow your gut on this as there seem to be many different views on how to handle.

Good luck! I know it is scary!

Jen

emonaco 12-20-2007 04:12 AM

Hi,

Our daughter also has an eyelid hemangioma but on the outer right eyelid so a little bit different than yours. We did see a dermatologist who counseled us against using oral steroids and to do a steroid injection instead. They also suggested seeing seeing a pediatric opthamologist. We're seeing Dr. Kenneth Wright here in LA who is well-known. He is very familiar with hemangiomas on and around the eye and in fact, just today, there was another family in the waiting room of his office with one similar to what you are describing. You might want to give him a call to see if it might be worth it to come out. Or you could email him. Also, one of the best doctors for hemangioma is Dr. Reinisch here in LA.

We did the steroid injection today(which we hope will work to at least stop or slow down the growth). Dr. Wright performed it. We next plan to have Dr. Reinisch remove her hemangioma in a few months when it hopefully stops growing.

Best of luck.

Rachel06 12-20-2007 09:44 PM

My daughter had an eyelid h and we elected to have Dr. Waner and his team remove it when she was 3 months old. The results could not have been more pleasing. We avoided any permanent damage to her vision and she is now 2 1/2 years old and looks amazing. Write me privately if you would like for me to send you photos or if I can help in any way.

Sherri
sherrirfoster@sbcglobal.net

shalsell 01-23-2008 05:13 PM

Dr. Denise Metry is with TCH. I have heard she is great. We have an app't w/her on Feb 14th. Our peditrician made the app't b/c she has a long wait.

quinnysmom 01-24-2008 04:50 PM

Dr Metry has been on maternity leave so that may be why there has been a wait. She is a fantastic doctor and very devoted to children with vascular anomalies, she is very kind and caring.

Jen


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