New here, 1 mo. old baby w large Hemangioma - Page 2 - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

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  #11  
Old 04-29-2011, 04:23 PM
twinmommy twinmommy is offline
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Hi, I did receive a prompt response from Dr. Nelson and he said this is not a 'wait and see' situation. So I will contact our ped. today and see what I can get done for a referral.

Thanks for your replies, it gives me more peace of mind to do something to be proactive than sit and watch this grow.....
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  #12  
Old 04-29-2011, 07:29 PM
KatieG KatieG is offline
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Good luck. I would say with how fast it is growing you need to take her to someone. Especially since its on her face, you want to minimize scarring. I am from southern CA! Lived there for 23 years!
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  #13  
Old 04-29-2011, 11:24 PM
missy missy is offline
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Let us know how things turn out!

Missy
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  #14  
Old 04-30-2011, 01:40 AM
twinmommy twinmommy is offline
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Well my ped. called and responded to my email. She is requesting urgent referral to both a derm. and an opthamologist... When I asked about propanolol, she said she thought Ruby was too young and also concerned because she is a premie. I have read and read and READ all day long about propan. and its successes, and I have to say if whomever she sends us to does not know about it, I will keep pushing. She mentioned that there are "so many other treatments we can try". Hmmmmmm.

I did find out Dr. Nelson will take our insurance so I might have to push to get that referral since it is out of network.

I did get a call from Ped's office and they were pushing for the referral so at least I got a fire under their bottoms.

I am sooooooo glad I found this website, I thank the person who posted it at twiniversity, if you see this!! thank you!!
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  #15  
Old 04-30-2011, 10:46 AM
missy missy is offline
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YAY!

Good for you!

Keep us in the loop ... I'm always begging for updates!

Missy
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  #16  
Old 04-30-2011, 06:40 PM
smurph smurph is offline
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GReat! Nice to see the pediatrician is onboard. Good luck with everything. I've never heard of twiniversity.....I usually go on twinstuff.com...I will have to check it out. These message boards have been a lifesaver for me the past few years!
Keep us posted!
Shannon
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  #17  
Old 04-30-2011, 08:49 PM
twinmommy twinmommy is offline
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I have learned a ton on twiniversity!! great resource!! sorry so short typing w one hand w sleeping bub on other
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  #18  
Old 05-01-2011, 02:25 AM
crofte crofte is offline
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I would also recommend taking her to an opthamalogist in the mean time! They would be able to dialate the eye to see if her vision is being impacted--it could at least calm your fears until you make a treatment decision...
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  #19  
Old 05-04-2011, 11:24 PM
twinmommy twinmommy is offline
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Well we saw the derm. today and I gotta tell you, I was not feeling very hopeful once I saw their website was all about botox and cosmetic surgery. Luckily the doc that saw her admitted she should be on prop. but had no experience with it. She took photos and emailed to a colleague and Ruby's ped. & this doc are trying to get our insurance to approve going out of network. Evidently no docs in our network are pediatric derms.

I got the approval for ped. optham. and will be getting that appt soon.

I am concerned with her being so young and put on a drug, but it is getting so big I don't feel we have much choice.
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  #20  
Old 05-05-2011, 10:58 AM
missy missy is offline
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Well, hi!

At least they have a plan! And they won't just botox it out of there.

So, do you feel successful, then? If you'd like, tell your doctor about VBF... our doctors often help advise other physicians regarding treatment options, so your doctor is welcome to email one of ours.

Missy
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