My 2 yo has a rapidly involuting congenital hemangioma (rich). After steroid therapy, 6 laser treatments, and an MRI. The rich diagnosis has been confirmed and my only treatment option ( which is experimental with a rich) is propranolol as the laser has been uneffective. This is my first time on this website . Iam feeling a bit defeated. My son has been through a lot in the last 2 years ( as I am sure many of you champion parents can relate) and I am looking for some support / reassurance that starting him on this drug is the right thing to do.
Has anyone had luck with the drug?
Almost everyone that I've heard about that used propanolol has had some measure of success, but I'm not sure I've heard of it being used with RICH. However, that just means that I didn't hear about it, not that it didn't happen.
When does he start it? We'll be looking for an update.
Thank you for your replies. I have not started the drug. I actually ask my Derm to give some time to think about it. I have a very active 2 year old who like most two year olds has a hard time taking direction. Before we start the treatment he has to do an eccocardiogram and an ekg. In order to get accurate results he would have to do the tests, once again, under sedation. Im also worried about taking his blood pressure. He hates having it taken, and always starts crying which gives inaccurate results. I was considering waiting until he is at least old enough to understand to ensure compliance and decrease his anxiety. It seems as though most of the kids on the drug are infants. Does anyone have a toddler on it?
I wonder if your doc would go for monitoring the blood pressure at home? We have one of those cuffs from Walgreens and it is surprisingly accurate. It might be easier on him if you can use one of those. Perhaps make a game of it and it won't be so stressful to him.
There are a couple of parents around here who have toddlers on propanolol and they will post soon, I'm sure.
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.