Hello! We are new to this site but our first daughter had an H and we did the steroid route then had it removed. Now one of our twins has an H and we are looking to start propranolol, she is almost 3 months old. I heard insurance does not cover it. How much will it cost us? Any information is welcomed!
Hi I too am new to this site, my daughter is 21 months with a H on her cheek, so far we were told by docs to do the wait and see thing, it has started to break up and has changed colour but is still very much [present on her face, this is the first time i've heard of this propranolol, i would be very grateful for any info on it
Have you guys directly talked with your insurance company? Could you get your doctors to write a letter stating that due to the location it is causing psychological issues? For me it DID cause me not to bond with my 2nd daughter's H because every time that I would nurse her I would find myself staring at her forehead. People also give rude comments and gestures.
BCE: We got a 3 month (500mg bottle) supply of propranolol for under $50.00. I'm from Canada but bought the propranolol in the united states. Willow you will definately find lots of discussion on propranolol in this forum. Google it and you will find even more information. Too much information for me to sum up. What I can tell you is that it is an old drug used for hypertension in adults/children but recently (a few years ago) it was found to significantly reduce hemangiomas in infants. My understanding is that it has fewer side effects than steroid treatment for hemangiomas.
Thanks alot Guys, Ive gooled it and read up on it and to be honest i'd pay whatever for it......I'll try anything to just see it going at this stage...I wonder if its used here in Ireland, will try find out. The fact that shes a little girl and its on her face really gets me down, and she is starting to mix with other kids, and its natural they will point it out, but breaks my heart. any doc I've spoke to just keeps sayin it will go by 4 0r 5yrs old....but im not sure that i can sit around and wait for something that may or may not happen........id like to start doing something now for her....
Bce: Yes the medication is fairly cheap. My son was not hospitalized by his doctor (Dr. Waner in NYC). His fee's for consultation is about $250.00, but he was very generous and waved his fee for us. The cardiologist my son saw also had a $250.00 fee, plus the cost of the electrocardiogram test which was about $600.00. Like I've mentioned I'm from Canada and my son recieved treatment in the united states so we had to pay out of pocket.
Hi there! We have no experience with propanolol, but I wanted to let you know that my 5 year old has a lip hemangioma. We treated with steroids and then she had surgery last month. Then I had twins (they are 17 months old now) and one of them has a big hemangioma on her hand. I thought that was a pretty weird connection!!! We don't have to treat the hand though, because it's involuting nicely on its own. Her twin sister has a very small one on her arm, so that makes 3 out of my 4 children with hemangiomas!
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and
supports research and programs that promote acceptance for individuals with birthmarks.
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.
Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.