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Juliette - posted on 02/17/2010 ( 2 moms have responded )

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Hi,



My name is Juliette and our son Colton was born Dec. 1st last year. At about 4 weeks he developed a small hemangioma between the bridge of his nose and his left eye as well as one on his back. The facial hemangioma has rapidly grown from what looked like a tiny scratch to a 8mm diameter and 3mm depth. Our first pediatrician advised us to watch it closely due to it's proximity to Colt's eye. We moved to a smaller town in West Texas from Dallas/Fort Worth and our initial pediatrician here dismissed it's rapid growth and told us when it was blocking his eye he would send him somewhere. I was a RN for 10+ years and knew that explanation wasn't acceptable. We saw our new pediatrician today and she is very concerned due to it's location, growth rate and the evident growth that we cannot see beneath the skin. There is a small buldge about the size of a nickel below/around the hemangioma. We are being referred to a pediatric dermatologist in Dallas. I have done research via the internet regarding treatment with corticosteroids, propranolol, timolol, laser, plastic surgery, and interferon alfa-2a. It seems there are side effects with all, as with most treatments and medications and I am just curious if anyone else has a child with a hemangioma in a similar location and what treatments they are utilizing and to what degree of sucess they are having. Colton is our first and only child and we want to be as educated as possible to make the best decisions regarding his future treatment. Thank you!



Juliette

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Juliette - posted on 03/03/2010

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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

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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

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