Deep H advice needed..please!!

crofte · #1 06-06-2009, 05:01 AM

Hello,

I'm a first time parent and my 4 month old daughter has a deep tissue hemangioma on her right eyebrow. It was not present at birth and made its appearance around 7 weeks.

Initially, we thought she may have knocked her head on our shoulder or chin and gotten a bump from it. After two days, we took her to an urgent care and the doctor said he thought it was an infected hair follicle and prescribed antibiotics. This made her terribly sick with diarhea and forced us to start giving her soy formula for milk intolerance. Her GP then said he believed the bump to be a sebaceous cyst, while a dermatologist thought it was a dermoid cyst. The derm recommended an MRI at Children's Hospital in Denver.

The MRI showed the mass to be quite large and solid. The neurosurgeon we were referred to reccommened a quick excision, saying that he was pretty sure it was a "tumor" and that it was most likely a hemangioma. The day before the surgery, we met with a plastic surgeon who was going to be assisting. He said that he had been working with hemangiomas for years and that removal is too risky, so the surgery got cancelled. We were both relieved and disappointed. The feelings are very complex...

I'm worried about her vision, as it is very close to her eye. The plastic surgeon said we have to wait until she is about 5 for any type of surgery, and that no treatment is necessary at this time, so we are just waiting for involution...

Anyone else have a similar experience?? Will it involute completely? Is her's small enough to not need treatment?

missy · #2 06-06-2009, 01:33 PM

Get in touch with Dr Fay at
http://birthmark.org/experts.php

and get his opinion.

Where are you located?

Missy

crofte · #3 06-06-2009, 03:56 PM

We are located in Western Nebraska--about 4 hours from Denver, Co.

esppinosa.karina · #4 07-10-2009, 06:03 PM

my daughter is 7months old now and she also has a hemangiona on her right eye lid . It started growing about two weeks after birth. Now it's about 2cmx2cmx2cm. We have been working with a dermotologist, ophtomalogist and a plastic surgeon. Although the dermotologist is the main dr. We started her with propanolol (inderal la.) and seeing that there is not much of a decrease in size the dermotologist has recommended for me to go see Dr. Waner in New york.

Now, I live in Miami and yes this is an option I am willing to take. But I would speak to the ophtomologist to make sure her sight is OK. My daughter's sight is developing just fine, so as a precaution, the ophto. has recommended to patch the opposite eye 2-3 hours a day, just to prevent the right eye from becoming lazy. That with the propanolol has been working fine, but we are still meeting with Dr. Waner, just in case we might have to operate.

I hope I helped. I know it's difficult, but hang in there. There's a solution to everything! good luck with anything you decide.

cheryl&brooke · #5 07-29-2009, 10:06 AM

Hi

My daughter was diagnoised with KHE at birth which is down her throat and removal is not an option her hemangioma was much larger than your daughters and was very visable across one whole side of her face.

She has received 10 months of weekly vincristine and daily steriod tablets.

Her treament has been a success and she is just turned two, we stopped vincristine at just over 1 year of age and at present are still continuting with a small amount of steriod but we are hoping this wil stop shortly. She know has no sign of her KHE although on MRI there is still some down her throat but this does not cause her any concern.

I hope your daughter is doing well, with her treatment.

Cheryl & Brooke