You didn't scare me; not anymore than I already am anyway! I appreciate your honest input. My thoughts were to go ahead with starting as an impatient as well. We also still haven't decided to use the Propranolol or not. I've been doing a ton of research, so I think I've reached the conclusion that it's the safer option, however my husband gets to hear all the info second hand and isn't so convinced. I'll get the real scoop tomorrow, when the measure it at her derm appointment, but the h seems to have stabilized for the time being. It's hard for me to tell with certainty if it's growing or not because her cheeks are growing so rapidly with the steroids! My husband thinks maybe we should just stick with the steroids if they're keeping it from growing. It's so hard to know what to do! I've also consulted with Dr. Buckmiller's nurse (the Dr. is out of the country), and while she doesn't know which she would recommend for sure, she said Dr. Buckmiller would either treat her with steroid injections or Propranolol or both. So, it seems the "experts" are recommending Propranolol and our Dr. is recommending steroids. Our Dr. says Propranolol is too dangerous and so are the injections, the experts say steroids are too dangerous. It would seem the experts should win, but it's hard to get the other warning out of your head!
As far as being an inpatient is concerned, I have a few questions for those who have done it with the Propranolol. Our Dr. told us that if they did treat with Propranolol, their protocol didn't include a hospital stay. The Ped. Cardiologists at our Children's Hospital didn't think it was necessary. That being said, I think our Dr. would admitt her if we requested it. She didn't think our insurance would cover it though because it's "cosmetic". I'm wondering what all of you experienced as far as insurance covering the stay? In general, if your doctor admitts your child, is it covered, or are there exceptions? My insurance is United Healthcare HMO. We don't have any deductible and 100% of inpatient stays are supposed to be covered. I'm scared to just call the insurance company and ask because I don't want to put any red flags up. Any ideas or tips on how to handle this?
Also, I know this post is already long, but does anyone have any research/info they could share on Propranolol. I'm researching as much as I can, but know there has to be things I'm missing. I'm looking for any info I can find as to Propranolol use in infants - safety, side effects etc.
My direct e-mail, if it would be easier, is firstname.lastname@example.org