Treatment for compound hemangioma on 2 month old's cheek

[baybemama]

We have an appointment with a pediatric craniofacial surgeon at Strong Hospital in Rochester this week to check out my son's hemangioma.  It's on his left cheek below his eye and growing not rapidly but is steadily increasing in size and spreading.  I've been doing a lot of research as well as speaking with people that have gone through different treatments.  I'm torn between all of the options. Granted we haven't seen this doctor yet to hear what he has to say but I have a good idea of what will be offered.  There is

a) steroid injections to try and stop further growth

b) propanalol and lasers.  Propanalol has been around awhile as a blood pressure med but more recently used on hemangiomas with great results.  Parents rave about it.  I don't know what to think about lasers.

c) surgery to remove it

Does anyone have experience with any of these?  Steroids are my least favorite option.  I'm not sure how I feel about propanalol.  I haven't heard anything negative about it so far. 

Surgery frightens me a bit but then it would all be over and wouldn't have to go back and forth on different meds and doses and always wondering if it will come back. 

I would love to hear from anybody who has gone through this or even just knows someone who has.  I've been a nervous wreck.

[Mummyboo]

If it's not affecting his eye, I would leave it and do nothing, it will involute over the next few years, if it doesn't involute completely he always has the option of having it removed or using camoflauge makeup on it when he is older.  My ten year old daughter had one on her forehead, it grew rapidly and was huge.  Now at 10 her forehead is totally flat with a very pale pink mark where it was.

The propanalol wasn't being used when my daughter was a baby, but the steroids are too risky unless it is risking the eye or airways, and surgery runs the risk of blood loss.

I know it isn't nice to have a baby with a hemangioma, and I know that when my daughter was still a baby I wanted it gone, but waiting really is the best, and they really do go.

[JoePinewood]

Push on the propranolol option.  It's been proven time and again to be highly effective with minimal side effects.  It's a far superior alternative than steroids.  And most importantly, get multiple opinions from docs.  Lots of these guys are stuck in their thinking that was relevant 30 yrs ago.  Check out Hemangioma Treatment Foundation website for additional information

[JoePinewood]

Excuse me, meant Vascular Birthmarks Foundation, not Hemangioma Treatment Foundation

[JoePinewood]

Excuse me, meant Vascular Birthmarks Foundation, not Hemangioma Treatment Foundation

[baybemama]

Since my first post we have seen a few doctors as well as emailed with Dr. Waner and Dr. Levitin in NYC.  They agreed Propranolol would be appropriate.  Waiting it out is not an option with me as it is looking pretty angry and growing much more quickly.  Yesterday a vessel popped up under his eye and now I'm concerned about this vision. He might need an MRI. It's also effecting his mouth and making him break suction while nursing.  At 3 months old now, it's going to get much worse before it gets better if it continues on this course in the first year.  I used to be worried about him taking the drugs and now I'm worried he won't get on them fast enough :(