Hi There, not sure if anybody can help me but here goes...
My DD (22 weeks) is going into hospital this week for treatment for a Strawberry Nevus she has on her eyelid. The drug they are giving her is Propranolol (it's used as a beta blocker mainly) and I just wondered if there are any other parents here who have gone through this treatment and what sort of effect the drug has/how quick will it work/are there any side effects? I have googled, but information is limited as this is a relatively new treatment (I believe). Anything that anybody can share would be of great help.
Hi my DS has just started this treatment last week. He is 6 weeks with a haemangioma around his right eye/ right cheek and one on his tummy. We saw effects after one dose. His eye had closed where he haemangioma had become raised and swollen but now his eye is fully open (started the treatment on Tuesday). The swelling has gone down and it is now flat and more of a pinkish colour with light skin coloured spots coming through instead of the angry looking dark red/purple it was. Where are you having the treatment? We went to Leeds Gen Infirmary and to GOSH for a second opinion but ended up at Leeds. The care has been fantastic. They have listened to us as parents and reassured us all the way through. DS was admitted on Tuesday and kept in for two days where they monitored his heart rate (as it can slow heart rate down) and his blood sugar levels (as it can lower them too). They have also kept his dose to a minimum as they originally wanted to give him 2mg per kg of his weight but he is only on 0.5mg (and we've already seen good results!) We're going in tomorrow to be reviewed (this is done weekly for as long as necessary as the dose needs to be increased according to his weight) and to check the blood sugar/pressure and improvement. So far we're really impressed. It is a new treatment for haemangiomas (since about 2007-8, when discovered by accident) but the drug has been around for years for cardiac patients and as an anti-anxiety drug and babies have been on doses 4-8 times what my son is on and side effects are rare. It's a far better option, in my opinion, than steroids and laser treatment for this reason. If you have any questions feel free to pm me and I'll give you my mobile number if you like - I found it really useful to speak to another mum in the same position as me.
If there is anything I can do to help, everyonesjealous please let me know. We really had to push to get my son treated as the GPs at our surgery didn't know anything about them and the result could have been my son losing the sight in his left eye. He wasn't born with it, it developed in the first week after he was born. We were told a couple of hours after his birth that a small whitish patch on his face could become a birthmark. No mention of the type etc. We were then advised to 'keep an eye on it for a year' 'not to worry as these birthmarks disappear, usually before a child is 9' and 'my gut feeling it is nothing to worry about, it might not even be a birthmark'. I suppose it has made me want to raise awareness about it myself (which is why i'm going to start a blog) so anything I can do to help, let me know.
Thank you, I will ask her about it when I see her. Don't want to mention it over FB! It is quite raised (prob about 7mm) and about the size of a 50p, I have only noticed it in recent photos and she is about 4mo now. Anyway will pop back after I see her x
my 3 year old daughter has one of these birth marks just between her nose and top lip. It appearred 2 weeks after she was born and we were told that when she was about 18 months old it would start regressing, which it has, but not as fast as we would like. We have been referred to the Leeds General infirmary for propranolol treatment and i just wandered if any one had any advice from their own experience.
Hi wanted to join this thread as my lovely daughter (11 weeks old) is starting treatment tomorrow for her birthmark. Hers is on her arm and has become ulcerated, oozing and smelly. She's not a happy baby and doesn't like being moved so we're very grateful that this treatment has been found and hopefully will help her....how is everyone else getting on?
hi my son is 14 weeks and has a strawberry birthmark on his left eye. we have seen a specialist and they are happy with his sight but referred us to a specialist for propranolol treatment. I was just wondering how it had worked for your little ones now time has passed. thanks