Opinions on my sons Hemangioma(picture included) - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 10-18-2011, 07:48 PM
nickbar nickbar is offline
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I can too (email doc) if you need help..

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  #12  
Old 01-06-2012, 02:49 AM
DaniMac0130 DaniMac0130 is offline
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I live in Jacksonville as well and my DD sees Dr Pearl Kwong. She's one of about 3 pediatric dermatologists in the area. Also, we're going on the 26th to see Dr Dean Glassman (chief of plastic surgery for Baptist downtown) to have the pulse dye laser treatment.

Your son's heman looks like my DD's did when it first started really growing. Good luck! I HIGHLY recommend seeing Dr Kwong. She's across from the Avenues Mall.
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  #13  
Old 01-19-2012, 06:02 PM
Jq0809 Jq0809 is offline
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Hi thanks for the replies, I have an appointment with dr. Kwong tomorrow so I will post after the visit. I had emailed two experts on here and heard from one the Florida expert and she just wrote to call to make an appointment but her office is in Miami so I wasn't able to do that. I waited a little while at my sons pediatricians request for the wait and see approach but his hemangioma has gotten larger and another pediatrician in the same office suggested I go see dr. Kwong. I will post after the visit and an updated picture. Thanks for everyone's replies...I am worried about how large it is getting and I hope he can get some treatment that has few side effects and is covered under Aetna.
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  #14  
Old 01-21-2012, 01:02 AM
DaniMac0130 DaniMac0130 is offline
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We have Aetna as well. Everything we've done for ours has been covered. Aetna is even covering the laser procedure she's having next week (as long as it's on the neck/head Aetna covers it). So I think you'll be alright! Since we're in the same city, if you ever want to meet up, let me know!

So, how did the visit with Kwong go? Did she recommend Timolol? That's what she started us on, but it didn't go well for us.
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  #15  
Old 01-21-2012, 03:23 PM
Jq0809 Jq0809 is offline
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Hey Dani! The visit with Dr. Kwong went okay I guess, she said he has a mixed hemangioma that you can tell my the bluish tint around the edge? So that means he wouldn't respond to laser treatment which was my number one choose for treatment. She did prescribe Timolol which I haven't started him on yet...what was your experience with Timolol? How long did you use it for? She also wants to start him on propranolol which I don't feel to comfortable with but I will probably see the cardiologist anyways just to see what he has to say. My sister in law is a pharmacist and is going to look into the medication as well. I'm going to email Dr. Levitin again because maybe he will have another suggestion or a different opinion. Dr.Kwong did say it is just superficial but that it will probably grow more and does suggest treatment. I'm really at a lost as to what to do because I don't want to put him on a medication that could harm him or maybe cause unwanted effects later in life but I also don't want to just let it grow and cause him issues later on.
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  #16  
Old 01-21-2012, 03:26 PM
Jq0809 Jq0809 is offline
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And Dani pm me and we can see about meeting up, it would be nice to get together with someone going through the same thing.
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  #17  
Old 01-24-2012, 08:01 PM
DaniMac0130 DaniMac0130 is offline
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My DD didn't respond well to the Timolol. She has a deep heman on her back/flank and we were told that laser wouldn't treat that as well. Because it's under the skin. We aren't looking to treat that one anyways.

The Timolol worked GREAT at first. I could actually SEE results in a day. But it just stopped working at one point. I even tried applying it more, but it didn't do anything. We didn't like the Propanol either. DD has already been through SO much with being preemie and all, the last thing we wanted to do was give her a drug like that. Plus, Dr Kwong said she would have to be on it for 6 months to determine if it was a success or failure. No thank you.

So we went and say Dr Glassman. He's the chief of plastic surgery for Baptist down town and while his personality was rather annoying, he's VERY successful with treating hemans. Through laser or excision. I'll give you his number in the PM!

One thing I have discovered with ALL the research I've done is this: It's best to treat as early as you can. If you get it while it's growing, it will be easier to treat.

Good luck with the Timolol! I hope you have MUCH better results than we did!
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