Vascular Birthmarks Foundation Forum - View Single Post - Advice/Questions: 4mths old and 3yr old
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Old 04-17-2011, 04:38 AM
Stefany Stefany is offline
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Join Date: Feb 2011
Posts: 11

Thanks for the replies!! I do feel better now we've seen Dr. Wagner, I was feeling so nervous the morning of the appointment that I was really nauseous - I'd never been so nervous so this was quite new for me lol. However I do feel a lot better thinking that we are going for the options that should have the best end results in terms of scarring/markings.
Dr. Wagner seems great, I did a search on this forum and she's not been mentioned much so in case someone in Chicago-land requires an expert she really seems like the best around here! She took her time to explain exactly what she recommends and why, showing me the parts of the hemangioma that are more damaged than others (ie: I had no idea that Kaylie's arm hemangioma had a ridge of extra skin on one side), she talked about past treatments done on similar cases (ie: steroid injections in a baby with a forehead hemangioma in the same area as Millie hasn't been successful etc). I could blabber on for a while about our conversation lol, but here is what the girls' "treatment" plan is:

Millie: will start on propanol for 6 months. I wasn't convinced about this but Dr. Wagner has reassured me as she has treated over 400 kids' hemangiomas with it and only in one case did it not reduce their size. Millie will be closely monitored, she's had a ECG while we were there and then had a 24hr holter monitor on. She then will be going into hospital for 2 days while they admister the first few dosages to make sure she's handling it fine. She will be followed up monthly and after the 6 months they will wean her off and see from there if more is required or not. Dr. Wagner mentioned that 1 or 2 sessions of laser therapy might be considered if any veins remain but that going down this route we should be avoiding any surgery Also her hair will be able to grow back fine so she won't have any bald spots (even after laser); yay!

For Kaylie: sadly her hemangiomas will be leaving a lot of damage - which is what I was expecting about her arm, I thought her tummy/chest ones would have been okay with time or laser but that won't really be the case. The smallest one on her tummy should be fine with laser; the larger one on the other hand is well, too large and there's a lot of damaged tissue even though it's not raised like her arm. Due to it being on top of her ribcage Dr.Wagner doesn't want to operate as a surgery scar will be very wide due to the stretching from breathing in/out so it won't look any better than how it will "heal" with time. She will try laser to reduce the veins/color but the damaged skin will remain. I'm really bummed about that to be honest as I expected these to have a better end result and I hope Kaylie won't be self conscious about it (ie: bikinis). As for the hemangioma on her arm she will be having surgery. The plan is to remove a part of it as it has a ridge on one side which will leave the most damage; then laser the remaining - so that she doesn't have to take off too much skin. As Kaylie won't be allowed to go to the park/playgrounds/swimming etc for 1 month after the surgery we are waiting until the Fall (laser on her stomach will be done at the same time while she's under the anesthesia).

The most upsetting part is knowing that if we were still in the UK nothing would have been done about them!! Kaylie would have been left with the lump on her arm :S and Millie's hemangiomas would have been left to grow and cause even further damage than nothing to help the appearance of the damage would have been done. A big grrr to the useless NHS! - rant over :P

So there we go with my essay... I will update once Millie starts the propanol; I've been told results will show very quickly and in a way I'm quite impatient! Again at swimming this morning (the older 2 have started lessons) twice did kids stop to stare and point at Millie, sigh.

Last edited by Stefany : 04-17-2011 at 04:42 AM.
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