propranolol oimntment for H on lip - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Help and Resources for Hemangiomas

Reply
 
Thread Tools Display Modes
  #1  
Old 04-20-2010, 10:54 AM
zsabo zsabo is offline
Junior Member
 
Join Date: Nov 2009
Posts: 4
Default propranolol oimntment for H on lip

Hi everyone,

Im from Hungary, we have an 8 months old daughter with a H on her lower lip. It is started at the 2nd day of her life, have a fast growing period till about 5 months and now is continued growing but much slower. It has "grey islands" in in what is said to be a good sign of reduction. We do know about Propranolol from the very beginning but did not adopt because growing was not threatening. At our last visit at our Doctor, we were offered an ointment with propanolol in it to try and see what is happening. Propranolol is in very low dose in the ointment but has got very good results with the children who tested it. Has anyone experience with this kind of propranolol treatment of H. I would appreciate all sort of commets.
Thanks a lot,
zsabo
Reply With Quote
  #2  
Old 04-20-2010, 01:01 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

There is one parent here who has tried that treatment, I think. Let me go see if I can find the post.

Hi and welcome!!

Missy
Reply With Quote
  #3  
Old 04-20-2010, 01:03 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

Quote:
Hi. I am new here, registered today so I could reply to this post. I am a surgeon in the UK and my daughter (now 13 weeks old) has a haemangioma (mostly superficial) on her right eyelid. She started oral propranolol three weeks ago, with a moderate response to this - a slight but noticeable decrease in size and lightening in colour. We also started a topical beta-blocker (Timolol eye drops, usually used for glaucoma) two weeks ago and I don't really think that there has been a huge improvement since then.
There are only a few published case studies on the use of topical beta-blockers (or indeed oral propranolol) as the published medical literature takes quite a while to catch up with developments. There has been a lot of discussion at medical conferences about the use of these drugs over the last couple of years though. Timolol will only work on the superficial component of the haemangioma.
Hope that helps....by the way, the only side-effect she gets from the combination of both treatments is occasional cold hands and feet.
Found it! I'll post the link as well.

Missy
Reply With Quote
  #4  
Old 04-20-2010, 01:06 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

http://174.120.2.174/board/showthread.php?t=3785

is the thread. In that thread, there is a link to an article as well.

Also, this post is about use of topical beta blockers for an EYELID birthmark, and this drug is usually used for glaucoma. It doesn't really address lip area.

Missy
Reply With Quote
  #5  
Old 04-20-2010, 09:25 PM
zsabo zsabo is offline
Junior Member
 
Join Date: Nov 2009
Posts: 4
Default

Thanks Missy for the info, but as you wrote our treatment is something else. Our doc put propranolol (little dose) in some kind of ointment and we have to anoint with it her lip twice a day. We are wondering whether it helps or not, I do hope so....
Reply With Quote
  #6  
Old 04-20-2010, 11:56 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

I hope so too. Sorry I couldn't find out more about it for you, but I think the treatment is THAT new.

So, you'll have to teach us how well it works!

Missy
Reply With Quote
  #7  
Old 05-01-2010, 02:09 AM
ADev ADev is offline
Junior Member
 
Join Date: Mar 2010
Posts: 10
Default Timolol - give it a try!

My 3 month old daughter has 3 H's - one on her cheek, one on her pelvis area, and a deep one under her eyelid (not very big or hurting vision yet). We have lasered her cheek and pelvis H's 4 times and that is helping to keep them small (pencil eraser size) and the cheek shows signs of involution in the middle. We started Timolol (topical propranolol) 3 days ago on all H's due to the suggestion of her eye Dr. and I have to say I've already seen a difference. It's a nice non-invasive/ non-side effect way to treat H's so I totally recommend it to any one who isn't sure about propranolol, but wants to something besides watch the H grow.
Reply With Quote
  #8  
Old 05-01-2010, 11:38 AM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

ADev,

Thank you so much for posting that. I couldn't find anyone with any experience in this!

Missy
Reply With Quote
  #9  
Old 05-27-2010, 02:57 AM
concernedmama concernedmama is offline
Junior Member
 
Join Date: May 2010
Posts: 23
Default

I'm interested in hearing more about the topical propanol.....Timolol. What dosage were you given? My daughter is 20 mos old and has a h on her forehead. We have only been watching it thus far but I have had appts with a specialist (Dr. Krol) It is about the size of a cherry....less red than it used to be but still raised. It is right on her hairline so I'm a little leary about having it surgically removed for fear of a bad scar. If you have photos I'd love to see some.
Reply With Quote
  #10  
Old 05-27-2010, 03:51 AM
tlampley3 tlampley3 is offline
Member
 
Join Date: May 2010
Location: Benton, IL
Posts: 56
Default

my daughter is using timolol and propranolol. she started the timolol about 2 weeks ago and propranolol a little over a week ago. i did see a slight difference in the few days we used only the timolol. we have seen a lot of progress with both. she has segmental hemangiomas on the side of her head, throat, and lip. we don't use the drops on her lip b/c she would just lick them off. an ointment would be good. i would be interested to hear how it works!
__________________
Tiffany
~Momma to Logan, 3 and Livy, 1~
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump