Ulcerated hemangioma near rectum and underside of scrotum (3 week old infant) - Vascular Birthmarks Foundation Forum
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  #1  
Old 02-04-2012, 05:37 PM
TKoch21528 TKoch21528 is offline
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Default Ulcerated hemangioma near rectum and underside of scrotum (3 week old infant)

Hospital discharged my grandson with a dx of ulcerated hemangioma. We have no pediatric dermatologist in town. Using Bactroban ointment and vaseline gauze. He's miserable at diaper changes. What have other parents done?
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Old 02-05-2012, 12:19 AM
smurph smurph is offline
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Wow! That must be terrible! Where do you live? I think he really needs to be seen by a specialist.

Shannon
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Old 02-05-2012, 12:43 AM
TKoch21528 TKoch21528 is offline
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Default We live in Tallahassee, FL

Jacksonville, Orlando, and Atlanta are places we can get to fairly easily. He was seen by a dermatologist and infectious disease doctor in the hospital. The dermatologist did a biopsy and came back with that diagnosis. The Infectious disease specialist ruled out staph, strep and herpes infections. The "adult" dermatologist said it was too complex for him to take on after discharge. The pediatrician is trying to locate someone she knows in Atlanta, but I don't know if Florida HMO will cover out-of-state consults.

I'm so new to this site and found a lot of information here. We haven't even gotten a copy of the Pathology Report yet. I read about PELVIC hemangiomas. He has a sacral dimple, but I can't remember if an ultrasound was done (I think it was done and was negative).

I'm a worry wart. He sleeps comfortably, until he passes gas, or has a BM or urinates -- then he's inconsolable for 30-60 minutes.

Last edited by TKoch21528 : 02-05-2012 at 12:50 AM.
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Old 02-05-2012, 01:37 AM
KatieG KatieG is offline
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Yes he needs to be seen ASAP by a specialist. I think there is a Dr. in South Carolina possibly. Could you travel there?
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Old 02-05-2012, 01:53 AM
smurph smurph is offline
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I would suggest maybe emailing Dr. Levitin or one of the other doctors on this site. (go to Ask the Experts) and maybe he will be able to give you some guidance or a suggestion of what type of specialist would be best, due to the location of his hemangioma. And you could email Corinne (the VBF director of Family Services) and she will have some ideas too.

The poor baby! I hope he is feeling better soon! Let us know how things go.

Shannon
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Old 02-05-2012, 11:22 AM
abatie abatie is offline
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I am working on getting a phone number for you. A friend of mine that lives in Orlando has a child with CMTC takes her child to a ped. derm. She couldn't remember if it is the doctor they see or the partner but on specializes in hemangiomas. I will come back when I get more information or maybe Emily will come and post.
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Old 02-05-2012, 05:26 PM
abatie abatie is offline
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The doctor that my friend's child saw was Dr. Tace Rico. My friend said that it is a visiting doctor who is more specialized. The name of that doctor is Dr. Connelly. She said you may not be able to get in with the visiting doctor but she thought that if not Dr. Rico would be able to get you in if this Dr. Connelly is a better fit. The phone number is 407-303-1687. The address is 615 e Princeton, Orlando, FL. She is going to try to send me the website link also. If I get that I will come back and post.
Alison
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Old 02-05-2012, 11:28 PM
missy missy is offline
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Alison,

You're awesome!! Thank you so much!

Missy
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  #9  
Old 02-06-2012, 12:19 AM
TKoch21528 TKoch21528 is offline
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Thanks to everyone! I now have some names of doctors for which the pediatrician can expedite an HMO out-of-network referral. Dr. T. Serena emailed me and suggested contacting a local wound care center -- so I'll call them first thing in the morning.

How many parents/grandparents on this forum have already dealt with diaper area ulcerated hemangiomas? I wish I had pictures to share.
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Old 02-06-2012, 11:55 AM
missy missy is offline
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Let us know how it goes. Dr. Serena is awesome! Very knowledgeable and also very caring. Glad you got in touch.

Missy
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