Facial Hemangioma-continue treatment or surgery - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 04-29-2011, 12:59 AM
siobhan siobhan is offline
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Hi Shanarama,

My daughter Emily is 8 months and we see Dr Blei at Vascular Birthmark Institute in NY. We are also on propranolol and timolol. We tried to wean last month and I thought I saw rebound growth so continued with the meds. My concerns were confirmed and Dr Blei said that we need to stay on the meds for now. She said at 8 months we are still in the growth stage and the goal is for the H to be completely gone by age 2. Granted Emily's H is almost flat but when she raises her eyebrows there is still a big lump underneath the skin. We are going to consider laser between 12-18 months. Surgery has never really been discussed so I can't speak to that but just wanted to share what is happening for us in case it helps at all. Feel free to email offline siobhanfahy@mac.com
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  #12  
Old 04-29-2011, 11:50 PM
tessaemay1981 tessaemay1981 is offline
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Hi! My son is 5 months old and is on propranolol for his 7 superficial hemangiomas (2 on his scalp, 1 on his jawline, 3 on his back, and one on his bum. Our pediatric dermatologist (Dr. Puttgen @ Johns Hopkins in Baltimore) said that if he had any internally, they would also be superficial and go away on their own. She also said if he was eating and growing at a healthy rate, an internal hemangioma wouldn't be a problem. Propranolol has been working great. He had a bad ulceration on one of his back H's and it healed beautifully and has shrunk and lightened quite a bit. The 2 on his scalp (they're stuck to each other) are the most stubborn...and the most noticable. I'm wondering if we're going to have to consider surgery as well. I can't wait for his hemangiomas to be a thing of the past!
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  #13  
Old 05-02-2011, 05:46 PM
slcraig1 slcraig1 is offline
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Hi,
My daughter had a very similar situation! 3 hemangiomas: 2 minor ones on her trunk and 1 bad one on her forehead. unfortunately, I didn't take her to dr until 3 months old, when it was already pretty big. If I had it to do over again knowing what I do now, I probably would have gone immediately to dr after she was born and tried the drugs you are using. However, our dermatologist (Dr Metry in Houston) recommended a wait-and-see approach. Plus, i was scared at the time of pumping drugs into her. Over time, the hemangioma grew to a point that I was conerned about teasing from other kids. So, at age 18 months (the age I thought she might start noticing the stares and teases), I opted for surgery. She does have a scar; but lucky for us, her hemangioma was close to her hairline so it is not very noticeable. In case it's helpful, here is a link to several photos documenting the growth and healing. We never did take any drugs (but like I said, if I had it to do over again, I would have tried them at the earliest stage possible).

http://www.flickr.com/photos/6246854...7626631303066/

Best of luck to you!
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  #14  
Old 05-03-2011, 09:40 PM
shanarama shanarama is offline
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Thank you all so much for your stories and pictures. I too want this whole H thing to be something in the past. All your children are simply adorable!!

siobhan - I thought I wasn't to the surgery point yet but I just feel badly for pumping all these meds into her. I'm going to ask about the laser treatments though.

tessaemay - I don't know why some of these things are more stubborn than others. The one on her hip has just about disappeared but this one on her head just hangs around.

slcraig - I have Dr. Metry's name on my list of doctor's to talk to my doc about seeing for laser treatments. Our derm is Dr. Levy here in Austin and he says that used to be chief of derm at Tx Children's and there is a laser there that is deep enough to penetrate my daughter's H. I'm trying to seek out all options to try to get this thing to go away once and for all. I have no problem coming down to Houston for a night to get treatment since we have family in the area. Did she do your daughter's treatment and surgery?

I know it's still completely cosmetic at this point and probably selfish of me to want it to go away so quickly but we're coming up on 7 months on medicine and I'd like to get away from this routine we're so used to. Plus more of a selfish note is that my whole family will be in my brother's wedding at the end of July so I was hoping that we'd get it at least a lot lighter in color for all the pictures.

She has a follow up appt tomorrow morning so I'll try to get all my questions answered and we should be able to start something whether it be surgery or laser or something.
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  #15  
Old 05-03-2011, 10:12 PM
slcraig1 slcraig1 is offline
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Hi,
Dr Metry did not do my daughter's treatment/surgery. I am local to Houston; so Dr Metry was just the first specialist we saw. I feel like we missed the opportunity to do drugs/laser because I waited until the H was pretty big before I ever took her to a specialist. The pedi had recommended wait and see; but in hindsight, I wish I had taken her to specialist immediately and gotten her on the drugs like you did!

Anyway, if your daughter's H is flat but red, you may be a prime candidate for laser. My understanding is that laser can do a great job with lightening the color; but it cannot flatten the hemangioma. The drugs are necessary for flattening. I do know that Dr Metry's specialty is laser, so she would probably be a great contact if you are considering laser treatment.

Surgery will leave a scar; but luckily for us, my daughter's H was in her hairline and the scar is easily hidden. That made surgery a much more palatable option for us. Dr Levitin in L.A. performed my daughter's surgery...

A word of warning for you... If you talk to a surgeon, they'll tell you surgery is the way to go. If you talk to a dermatologist, they'll tell you drugs/laser is the way to go. The best bet is to educate yourself on the pros/cons of all the options and then make your own educated decision. Go with your gut!

Good luck!
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  #16  
Old 05-10-2011, 03:35 PM
shanarama shanarama is offline
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I just wanted to update on Ella's appt. I didn't get all my questions answered but we'll see the surgeon for a consultation to see if she's even a good candidate. Dr. Levy said that the surgeons don't make money unless they do surgery and if they said not to do surgery then you don't want to find one that will. We're going to go ahead with the laser treatments while we wait on the surgical consult and then weigh our options. But we're in a holding pattern now waiting on insurance to process the request. He said because it's flattened out so much, he'll only need to do the laser for 5 seconds every couple of weeks and will only need to apply numbing cream on her instead of a shot of anesthetic.

He was although very pleased with the progress she's made with the propranolol and timolol combo. He said this was the first time that the H showed real progress so I'm happy about that. He couldn't answer the questions about the surgery but I asked him that if it were his child, what would he do and he said the meds and laser. I told him that I was still very concerned about the long term effects of the meds and he said that since they have been around for quite some time, there hasn't been any long term effects to be studied. I guess I feel a little better but I still don't like giving her so much medicine.
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