Ulcerated hemangioma near rectum and underside of scrotum (3 week old infant) - Page 3 - Vascular Birthmarks Foundation Forum
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  #21  
Old 04-20-2012, 09:16 PM
mortman mortman is offline
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Our family doctor brushed off his bifid scrotum and H. I took the steps to seek out a dermatologist. When we took Lincoln to her (he was 5m) she and the other 3 derms in the office had never seen a H like his. It is raised in some places and below the skin in others. She took pictures and sent them to University of Minnesota Dermatology director. He responded immediately with the need for an MRI. Within 2 weeks Lincoln had a spinal, head, and lumbar MRI. That is where they found that he had the tethered cord and fluid buildup in his spine. Lincoln had no dimples or hairy patches but Derm said that the H crossing his mid-line was a warning sign of the tethered cord.

Also by the time he had surgery he was 10m and had very little feeling in his left leg. He was a late crawler too.

Our youngest son was born 16m after Lincoln. He has a deep dimple near his behind but an ultrasound at 3m found everything to be normal

With other health issues I think I would push for a check but that is because of our experience.
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  #22  
Old 10-31-2012, 01:17 AM
TKoch21528 TKoch21528 is offline
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Quote:
Originally Posted by emclean View Post
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

Hi everyone! It's been a while since I checked out this forum. The baby is 9 months old now -- and such a HAPPY baby. He rarely cries, has 5 teeth, is crawling (but not babbling yet).

His ulcerated hemangiomas cleared up nicely on Propanolol and the various ointments. He has a scar from the one ulcerated area near his anus, but the redness disappeared over time, being replaced with just a smooth flat dark stained areas.

As he gained weight, and they tried to increase his dose to maintain a therapeutic level, he wasn't tolerating it very well, so they decided to keep him on his regular dose and let it taper off on its own (as he gained weight).

He hasn't been on medication for several months, without recurring until last week when he started running his first high fever at 103 (ear infection and bronchitis). The redness returned (but no ulcerations). So we scheduled a return visit back to Orlando for next week (Dr. Tace is on maternity leave and available ONE day next week). It's a long drive for a baby in a car seat, but we were ready to go!

TODAY his fever is gone, and miraculously, so is the redness of his hemangioma! What's up with that? Is it because it's a vascular lesion that the redness returned? There's no indication that it was even there. His skin is back to normal (his normal). Anybody heard of that before?
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