Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Resources in Central Florida (http://birthmark.org/board/showthread.php?t=6529)

cparker 10-15-2013 04:58 PM

Resources in Central Florida
 
Hi everyone. I came across this forum in looking for resources in area. My son is 5 1/2 months old and has what we've been told is a hemangioma on the edge of his right nostril. It started as a tiny red spot that we noticed when he was about 5 or 6 weeks old and now covers the entire top half of the edge of his nostril. We were actually told by a local pediatric ENT (who we saw for an unrelated issue) what it was, and since then have had it confirmed by both his pediatrician & a local dermatologist (not pediatric.) All of them have basically told us to just leave it alone and it will go away on it's own, but of course I'm not 100% satisfied with that answer. I'd like to get it evaluated by someone who actually has some expertise with this, and perhaps explore whether timolol or propanolol would be good options for us. Unfortunately, I cannot seem to find a pediatric dermatologist in my town (Tampa, FL.) I was told that the University of Florida (about 2 hrs away) was considered a "center of excellence" for infantile hemangioma.
Does anyone have any experience they'd like to share, or know of any doctors in the central Florida area that specialize in this? I am not opposed to making the trip to UF if that's the best place to go, but I'd like to see what the best option is. Thanks!

smurph 10-16-2013 01:43 AM

Hi there! If you go to the Find a Doctor section on this website and click on the US and then Florida, you will find a list of names of doctors in your area. There is one listed in Tampa actually as well as a few others. This is not a complete list of doctors who specialize in hemangiomas but nevertheless, these are the doctors that are part of the list of resources for VBF. It seems like a great place to start! Maybe you have already seen this list, but I thought I'd point it out just in case. It can be hard trying to find out information at the beginning but going to see a specialist is usually a great idea and often helps you to have some more peace of mind. I know that it helped me! Good luck and let us know if you have any questions.
Shannon

missy 10-16-2013 01:58 PM

Hi and welcome!

Congratulations on your new baby!! YAY!! I love babies!

The list is here: http://birthmark.org/node/47#florida Although, I'm not sure that the doctor listed there is exactly what you need, it might be a good idea to schedule a consultation with him and see what he has to say.

Nasal hemangiomas need treatment of some sort ... at least a specialist who will help you evaluate each step. Some hemangiomas (not all) can grow rapidly, and ones on the nose can be the most disfiguring and difficult to fix after the fact.

If you can go to Gainesville, if you have the resources and can travel, I'd go there.

Keep in touch!

cparker 10-23-2013 08:45 PM

Quote:

Originally Posted by smurph (Post 27088)
Hi there! If you go to the Find a Doctor section on this website and click on the US and then Florida, you will find a list of names of doctors in your area. There is one listed in Tampa actually as well as a few others. This is not a complete list of doctors who specialize in hemangiomas but nevertheless, these are the doctors that are part of the list of resources for VBF. It seems like a great place to start! Maybe you have already seen this list, but I thought I'd point it out just in case. It can be hard trying to find out information at the beginning but going to see a specialist is usually a great idea and often helps you to have some more peace of mind. I know that it helped me! Good luck and let us know if you have any questions.
Shannon

Thank you! I did look at the link, but I'm not quite sure if either of the two local doctors listed might be what I'm looking for. One, while it does say management of pediatric patients, looks like they mostly do cosmetic type stuff, or laser treatments. The other looks to be a plastic surgeon. I do think I might just suck it up and take the trip to Gainesville, since we have family there. I will keep you all posted!

cparker 10-23-2013 08:47 PM

Quote:

Originally Posted by missy (Post 27090)
Hi and welcome!

Congratulations on your new baby!! YAY!! I love babies!

The list is here: http://birthmark.org/node/47#florida Although, I'm not sure that the doctor listed there is exactly what you need, it might be a good idea to schedule a consultation with him and see what he has to say.

Nasal hemangiomas need treatment of some sort ... at least a specialist who will help you evaluate each step. Some hemangiomas (not all) can grow rapidly, and ones on the nose can be the most disfiguring and difficult to fix after the fact.

If you can go to Gainesville, if you have the resources and can travel, I'd go there.

Keep in touch!

Thank you! I agree that we need a specialist to evaluate. Especially with the location of his hemangioma, I'm concerned that it could start growing rapidly and cause problems. I'd rather see if something could be done before we get to that point. I do believe I am going to try to make the trip to Gainesville. I will update when I can!

Also, I'd be interested to see if anyone else browsing this forum has experience with nasal hemangioma & what type of treatments, if any, they pursued.

smurph 10-24-2013 01:13 AM

maybe this will help?
 
I was browsing back through old posts about nasal tip hemangiomas and didn't know if this thread would be helpful to you:
http://birthmark.org/board/showthread.php?t=3666

So I thought I'd just pass it along.

Shannon

cparker 10-28-2013 05:06 PM

Quote:

Originally Posted by smurph (Post 27099)
I was browsing back through old posts about nasal tip hemangiomas and didn't know if this thread would be helpful to you:
http://birthmark.org/board/showthread.php?t=3666

So I thought I'd just pass it along.

Shannon

Thank you for the link. This is helpful for sure. It definitely reinforces my decision to seek out another opinion from a specialist. I just sent an email with pictures to Dr. Wesson at the University of Florida this morning. Hopefully I will hear back.

missy 10-28-2013 10:05 PM

Awesome! Please let us know what happens. How long is the drive to University of Florida? Is that a trip you can make?

cparker 10-29-2013 04:37 PM

Quote:

Originally Posted by missy (Post 27105)
Awesome! Please let us know what happens. How long is the drive to University of Florida? Is that a trip you can make?

I will! It's only about 2 hrs, so it's definitely do-able. Also my inlaws live there, so we'd have someplace to stay if we didn't feel like going back & forth in the same day. I haven't heard back yet, but hopefully I will.


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