Ulcerated hemangioma near rectum and underside of scrotum (3 week old infant) - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 02-06-2012, 10:13 PM
abatie abatie is offline
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Here is the link- http://www.floridahospitalforchildre...ur-specialists
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  #12  
Old 02-08-2012, 12:00 PM
missy missy is offline
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Hi all,

Is anyone else having trouble logging in? TKoch says she cannot, and asked me to submit an update:

Quote:
Everything came together this afternoon! Parker is going to be admitted to the Florida Children’s Hospital in Orlando under the care of Dr.Tace S. Rico for 3-4 days for a complete evaluation by pediatric dermatology, plastic surgery, and cardiology. Dr. Rico has experience treating ulcerated hemangiomas, saw his pictures, and immediately said he needed to be started on a treatment program. Parker’s local pediatrician and Dr. Rico are coordinating his care.

We are also fortunate that Dr. Elizabeth A. Connelly is a visiting board-certified pediatric dermatologist from Miami at the Florida Hospital for Children. She directs pediatric dermatology laser surgery and the procedures clinic for their dermatology program.

Our local wound care center is on stand-by to assist in any way the pediatrician and Dr. Rico request.

Thank you for your incredibly helpful guidance. It helped me relay information to Parker’s Mom & Dad. This appointment comes none too soon. He was really fussy last night and throughout the day today.

I still don’t have the ability to post a reply to the VBF Forum (my Login keeps reverting back to the Login page), so could someone please update the folks from my post under TKoch21528 for me? Many, many thanks!
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  #13  
Old 02-08-2012, 03:07 PM
abatie abatie is offline
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I am not having any problems logging on.
Alison
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  #14  
Old 02-09-2012, 01:49 AM
smurph smurph is offline
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I am so happy that you have hooked up with an experienced doctor and that he is getting evaluated/treated. Thank you for the update! Please keep us posted!

Shannon
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  #15  
Old 02-16-2012, 12:10 AM
TKoch21528 TKoch21528 is offline
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Thumbs up Treatment Update

Things are really great! The baby was admitted to Floridal Hospital for children from 2/8 through 2/12. He's now on propanolol and numerous topicals. The nonulcerated hemangioma areas are beginning to lighten, and we have no NEW ulcers forming. He goes back to Dr. Rico in early March for laser treatments.

Thank you so much for recommending this Doctor in Orlando. She's absolutely fantastic!
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  #16  
Old 02-22-2012, 01:33 PM
beef5stew beef5stew is offline
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Just noted this thread. My DD's hemangioma ulcerated at 10 weeks. We found a topical covering called "Duoderm" worked great. It looks like a big bandage, but it stays on for several days and creates a barrier between the hemangioma and other skin.
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  #17  
Old 03-04-2012, 01:38 PM
spaatz1329 spaatz1329 is offline
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My daughter has PELVIS Syndrome and we really struggle to keep the hemangioma around her anus from tearing open. We have both metrogel and desonide to help and she takes miralax every day to keep her stools really soft (she is 9mo now so solid foods have firmed them up a lot). Good luck with the specialist, these things can cause major internal issues so a full workup is essential.
__________________
Jamie
Ellie- born 5/24/11
Forehead Hemangioma, Finger Tip Hemangioma
Large Diaper Area Hemangioma w/ PELVIS Syndrome
Tethered Spinal Cord, Bladder Exstrophy/Cloacal Anomoly
Diagnosed with Rhabdomyosarcoma 3/19 begins 46 week Chemotherapy treatment 4/9
On Propanol 1.4mL/3 times daily
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  #18  
Old 03-16-2012, 01:14 AM
emclean emclean is offline
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TKosh,
I would love to hear an update! I am abatie's friend who recommended Dr Rico. I'm so glad you received good care. Let us know how your little one is doing
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  #19  
Old 04-13-2012, 10:02 PM
mortman mortman is offline
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My son has LUMBAR syndrome. He has a H near his rectum and also many small ones on his genital area. He is now 2 but still has issues with the rectal one ulcerating at times. We used topical propranolol until his rx ran out. It kept if from growing more and usually kept it from ulcerating.

We are headed to a GI next month to see if there are more issues. He absolutely will not go #2 without Miralax. He will withhold any formed poop. We are not sure if it has to do with a deformity in the rectal area, his hemangioma, or damage from his tethered cord. We know he has feeling back there so damage from the tethered cord is unlikely.

I could share pictures if anyone wants. I have some from when he was 6 months and some from a month ago. Let me know.

Missy

Lincoln: 2yrs
born: bifid scrotum
Lower body hemangioma appeared @ 2wks old
diagnosed with LUMBAR syndrome & thethered cord @ 6m
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  #20  
Old 04-13-2012, 10:41 PM
abatie abatie is offline
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How did you know your child had a tethered cord? I asked my child's doctor about it because of this deep dimple that she has just above her butt. My doctor brushed us off and said to not worry about the dimple. My other daughter also had a dimple but it wasn't as deep and hers closed. My youngest daughter's dimple is getting larger and deeper. She also has CMTC and heart issues so I would not be surprised if there are more issues. What type of doctor diagnosed it? Thanks for any input. I had posted about this a long time ago on the CMTC thread.
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