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!!
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!
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...
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.
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.
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
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