I am from Scotland and my 5 year old wee girl has a Hemangioma on here forehead.
We have pretty much been advised since she was small to wait and see if it faded by itself, but it has not really changed in the last year or so.
The doctor is now putting her on a course of beta blockers to see if they make any difference prior to any surgical procedure.
We aren't gettin our hopes up that it will make much difference at this stage; seems like its a little late.
Does anyone know of any success with an older child?
It seems that all the successful cases alluded to here are with young babies.
Cant offer much help but thought I'd say hi as we are from Scotland too (nr Aberdeen), where are you?
My Daughter is 2.5yrs and has a large complex hemangioma on her eyelid and head. She was on steroids as a baby for 3mths, which did not work so had her 1st surgery at great ormond street in london. She still attends GOSH and our local hospital but also goes to St John's in livingstone to the laser centre with the view of having laser in the future in addition to further surgery at gosh. Have they mentioned laser to you?
From what Ive heard about beta-blockers they can help, so hopefully it will help you daughter. I mentioned it at GOSH and they do not have much experience of giving them to older children, most are when they are very young.
Good luck and I hope your get the results you are looking for.
Glad to here your Daughters propranol treatment is going well.
My daughter has a large hemangioma on the side of her face and neck. We live in sunderland (north east) and are currently under James cook university hospital Middlesborough. We are going to be starting a treatment on the 15th april called Bleomycin which is a low dose cancer drug which they inject into the birthmark.( this is the only place in the uk as i know of that offer this treatment the consultant is from south africa) We were given the wait and see option from sunderland but how long have you got to wait? my daughters H came up a week after birth and she is now three and its only shrunk a little. she was on steriods Prenislone) to stop the growth which it did. We were/have never been offered propranol. It was just by chance i saw this treatment on the local news that i pushed for a referal. We have been told that we have an 80 percent of shrinkage which to me is good..
Please let me know how your daughter gets on with her treatment and pm me if you want to chat/any support.
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.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
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.