9 year old with deep hemangioma of forearm....new treatment options?

[danielle6315]

my 9 year old daughter has deep hemangioma on left forearm from wrist to elbow. when she was between 1-4 years old she had multiple pulse dye laser treatments that successfully removed the deep red coloration, it is now her skin tone in color with bluish undertones. we were told as she gets older will involute. she's 9 and no sign of involution, arm is still if not as of recently, very puffy in appearance, swollen. recently complaints of ot feeling sore and some deeper blue coloration appearing. we have appointment next month again but curious if any one has older kids with this and if so, what treatment at this point.

[smurph]

I'm thinking that she doesn't actually have a hemangioma. Usually those begin involuting around the age of one. Have you been seeing a specialist all this time or has it been a long time since you have been for an appt. ?
I would definitely see someone who knows something about other birthmarks/malformations to make sure the diagnosis is accurate and then maybe they will have some other ideas for treatment options since they vary for different types of birthmarks. Good luck! Keep us posted!
Shannon

[danielle6315]

she hasn't been to dr. Warner since 2007, that was the last of her 4 laser treatments, he said to wait and see the involution process. but your right im thinking it may be a vascular malformation. we have appointment with dr. Rosen this month and im hoping he has some insight for us,

[smurph]

I hope you get some answers. I bet he will be very helpful. Keep us posted!
Shannon

[danielle6315]

We had seen dr. Rosen yesterday. Kate has a vascular malformation of left forearm that was interestingly covered with a henangioma and appears to be both venous and lymphatic. In process of getting MRI w contrast to determine treatment plan but he is confident of treatment

[archamsm]

Hi! I'm a newbie here. First time posting. My daughter is 2 1/2 and was diagnosed with a hemangioma on her lip and nose shortly after birth. We were seen at Cincinnati Childrens hospital where we started proprananol at 3 months. She was weaned off proprananol around 18 months and had surgery at 2 years as the hemangioma appeared to have some regrowth. The hemangioma was successfully removed from her lip and laser was done for discoloration under her nose. 6 months later the area abover her lip remains swollen and has purple/bluish undertones under the skin that are noticeable. We were told early on that they believed she presented with both a deep and superficial hemangioma, but that wasn't an absolute. I am wondering now if something more is going on and how to proceed with further treatment. Some days the area above her lip appears more swollen than others. I'm curious about your childs diagnosis with vascular malformation that was covered up with a hemangioma. How was this diagnosed and how are you treating it. Any adivce or helpful leads would be greatly appreciated. stacy

Originally Posted by danielle6315

she hasn't been to dr. Warner since 2007, that was the last of her 4 laser treatments, he said to wait and see the involution process. but your right im thinking it may be a vascular malformation. we have appointment with dr. Rosen this month and im hoping he has some insight for us,

[smurph]

danielle6315-
Wow! That's crazy! I've never heard of that before. I'm glad that your appt. was productive and that you are on your way to a plan! Thanks for updating!
Shannon