New mom, new to group

Juliette - posted on 03/03/2010

Thank you so much for the information you have learned with your daughter. We saw the specialist this week. Colton has three external one on his hand he was born with and the one on his face and one on his back that showed up at 4 weeks. She is not concerned with the facial hemangioma saying it has probably reached it's peak growth and has no indication of internal growth beneath it. She has prescribed topical steroids. She advised us to monitor the one on his back even though it has remained flat and has not grown, it has a pale ring indicating internal growth. Unfortunately what we've been so worried about is not our main problem now. Colton was also born with what we thought was a dimple at the top of his nose between his eyes, we thought it was cute! It turns out to be a sinus tract connected to a dermoid cyst. We are going in for an MRI in the morning because they are afraid it may have another tract connecting it to another cyst on the brain. Surgical treatment will be our only option but we just have to see the extent of it and whether it will be an ENT surgery or a co-procedure with a neurosurgical team. The dermatologist mentioned removing the facial hemangioma while he's under to prevent any plastic surgery later to remove the extra skin. There is also some concern he might have internal hemangiomas as well since he does have three external. Hopefully we'll know what our plan is in the next few days and can get our baby fixed up. I wish you the best with your daughter's treatment and I'll look for you on facebook too! Thanks again for sharing your story. It's so nice to meet mothers going through the same type of worries and concerns over their little ones.

Juliette

Melanie - posted on 03/03/2010

Hi Juliette.



My daughter has three. One on her face that starts just next to her left eye, one internal, near her optic nerve, and one internal that lays along her airway. We found the internal ones when the external one swelled, pressing on her facial nerve and the one side of her face went completely still. They worried it was a brain issue, and we were rushed in for an MRI when she was five weeks old. They immediately began treatment with corticosteroids (which work, but they're hell to take and administer) and propranalol. The hemangioma is now fading and though we started on the largest possible dose of the steroid, we have now successfully weaned her off and she is only on propranalol, which is still a very new treatment option, and I notice no side effects from it. The steroids carried with them a host of horrible side effects, but like I said, they work. Within days of starting them, the outward change was just amazing and continues to be good.



We're hoping to do another MRI when she's a year, just to check on the internal ones, and we're going to probably continue the propranalol for a while now.



Let me know if you wanted to chat - you can always add me on Facebook.

Take Care!!



Melanie