Thanks you guys
We are so happy that the medicine worked so well. Interesting to see what the future brings. Maybe some plastic surgery. Depends on how his skin grows with him. The hemangioma almost look like a big burn scar now. The skin is so thin.
Wow that is absolutely amazing! You have given me so much hope Thankyou for taking the time to show me this, Really appreciate it (I think sometimes you can feel helpless). Let me know what happens in the future regarding skin growth.
I am new to the site after doing some internet searches regarding this topic. My baby is going in next week to get her first doses of Propranlol. She is going to actually be exactly three months next week the day she gets admitted :-((( It is mainly on her side of the nose and not very big actually, but it is pushing on her nose cartilage a little bit so that is why they feel she needs to be treated, because it is closing in on her one nostril on that side.
I am full of mixed emotions and am crying on and off, I know this medication is new and am learning as much as I can about it. Length of treatment I was told can be up to 18 months which is disheartening but I was told after stopping it for 12 months they have seen it come back again, so 18 months is more effective. They said they are going to start her with 3 times a day and wean her off- when do they start decreasing the dosage and weaning her off?
I am praying she won't have to be on it for THAT long :-((( Good to know that it is working well so far-after the course of treatment does the coloration go away too? Those that finished this treatment-do you see any long term side effects? That is what I would be concerned with.
So she started on it and has been on it for a week so far. I do see the bluish part of it is fading away and it's not as bumpy-the red part of the hemangioma is still there though-anyone know how long before the red part starts to go away while being on this medication?
My son has been on propranolol for about 9 months, he started when he was 7 months old. We have see really good results with the treatment...within 48 hrs it was less red and even looked smaller. I will have to post some pictures soon but he hasn't had any side effects that we know of and we are going to wean him off of it in 2 months. Good luck!
Give it time. Propranalol works well for my daughter. The only side effect she had was an occasional night terror, but they were pretty rare. She was well monitored by cardiologist, too, for any BP issues.
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.