Advice/Questions: 4mths old and 3yr old - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 02-16-2011, 02:54 PM
Stefany Stefany is offline
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Thank you all so much for your replies!!
A little update: I have received a reply from Dr. Levitin and he does recommend different treatments for their hemangiomas (from surgery to laser depending on the hemangiomas). It sounds like Kaylie's arm won't look right (the large lump remains even where the Hemangioma is back to normal skin color) due to the extra tissues which confirms my concerns So she will need surgery for that one for sure by the sounds of things, and hopefully just laser for the other two on her tummy/chest. As for Millie it sounds like head Hemangiomas don't heal up as well with remaining tissue & lack of hair growth; so again it sounds like we might have to go down the surgery route... I want to look more at Propanol though for her to see if that could be another option for now.
In 6 weeks my husband's workplace is changing health insurrance and I looked at the "Experts" list in IL and it looks like the new insurrance will be in network with the experts at the Children's Memorial Hospital in Chicago so I'm now hoping to have the girls seen there. I'm not sure if it's best to be seen by a dermatologist or a plastic surgeon though (there's both types of Experts that we could choose from); which type of Epert did you guys see? I'm finding it a little annoying we have to wait another 6 weeks but in the mean time I'll read "Birthmarks: A Guide to Hemangiomas and Vascular Malformations"
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  #12  
Old 04-11-2011, 02:47 PM
Stefany Stefany is offline
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Just to update, Millie has her first appointment with a specialist, Dr Wagner (Chicago), on Thursday. She's one of the experts listed here and she was recommended by the pediatrician when I showed her the letter from Dr Levitin. They're not in a hurry to see Kaylie though, but she'll come along to the appointment anyway as I'm hoping to discuss what they think of hers too. I'm kind of nervous, I know decisions will have to be made eventually and I hope we don't come to regret them!
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  #13  
Old 04-11-2011, 10:23 PM
missy missy is offline
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Please remember to come back and tell us how things went!

Missy
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  #14  
Old 04-14-2011, 01:03 AM
nickbar nickbar is offline
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Let us know how tomorrow goes. My advice on "regret"... take it all in, get all those opinions like you have and look at the route that best fits your instincts...then don't look back and second guess yourself after you've gone thru that route. You are doing the best you can for your children by being educated, getting all the options on the table explained to you and seeking the support from other families here. You are in good hands with Dr. Levitin and with Dr. Wagner. Good luck
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  #15  
Old 04-14-2011, 03:41 AM
smurph smurph is offline
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I get what you are saying about the "regret" part...I tended to worry about that a lot (I'm a real worrier and I'm sure the people on here can attest to all my "worrying" posts!!!!). I would always say, "I hope I'm making the right decision" After discussing my feelings and hesitations (about surgery and laser) with our pediatrician one day he said, "You can't make a wrong decision on this...she'll be fine if you do the surgery and she'll be fine if you don't. You just need to trust your instincts and go with it." I feel like that took a lot of the pressure off. I think as a mother we always tend to second guess ourselves because we are trying to do what is best for our children. I know how tough the decisions will be, but you will survive....I did We just recently finished my daughter's hemangioma treatment and now when I look back on it I'm glad we made all the choices we did...even though they were hard to make at the time. You love your girls and you really can't go wrong!! Keep us posted!
Shannon
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  #16  
Old 04-17-2011, 03:38 AM
Stefany Stefany is offline
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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 03:42 AM.
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  #17  
Old 04-18-2011, 07:16 PM
nickbar nickbar is offline
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Glad to hear the appt. went well. No, Wagner is not mentioned a lot...but she does have a good reputation and I believe she is part of the ISSVA and has attended conferences at the NIH.

Please keep us updated on her progress.

Take care
C
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