Propranolol for Hemangioma - Page 5 - Vascular Birthmarks Foundation Forum
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  #41  
Old 10-08-2010, 12:16 AM
jacobs_mom jacobs_mom is offline
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Quote:
Originally Posted by lrlt2000 View Post
My daughter is 10 weeks old and started Propranolol on September 13th, at just 6 weeks old. She has a H on the FRONT of her nose and it is just an awful place to have one: can you say "Rudolph"? It's the first thing on most people/children's minds, and one even said it.

I'm so glad I have an outlet of people who understand!

ETA: Our dosage is 2mg/kg/day. When she was in the hospital for monitoring for the first 24 hours, they started her on 1/4 doses, then upped to 1/2 doses. She stayed on half doses for three days, and then went up to the full dose. The pediatric cardiologist re-checked her after that first full dose, and she's been on the 2/k/d since (she takes it every 8 hours, so 3x a day).
Welcome! My son's hemangioma is on his nose, slightly to the left and it goes slightly inside his nose as well. It was a soft pink spot like your daughter's when he was born. In two weeks, it had turned bright red. I'm so glad you advocated for your daughter right away. I wish I had done the same instead of waiting for our first appointment when he was 2 months old.

Keep us updated on her progress!
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  #42  
Old 10-09-2010, 03:04 PM
lrlt2000 lrlt2000 is offline
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Originally Posted by jacobs_mom View Post
Welcome! My son's hemangioma is on his nose, slightly to the left and it goes slightly inside his nose as well. It was a soft pink spot like your daughter's when he was born. In two weeks, it had turned bright red. I'm so glad you advocated for your daughter right away. I wish I had done the same instead of waiting for our first appointment when he was 2 months old.

Keep us updated on her progress!
Thank you! We went back to the cardiologist yesterday and she indeed weighs 1 lb 11 oz more than she did when they first calculated her dose! She went from .75mL to .85mL. Unfortunately, it seems to be getting a little bigger since our appointment last Friday with the plastic surgeon. I'm going to contact him and see if he thinks we should get a little more aggressive.

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  #43  
Old 10-12-2010, 10:26 PM
carii carii is offline
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I just wanted to post and thank you all for your support. I have really been beating myself up about not pushing Julian's doctor harder, and your posts made me feel so much better. I will, in the future, speak up more for what I think is right, but I won't punish myself for not doing it earlier this time.

Also, thank you for sharing your experiences--knowing that it may not scar really gives me perspective on doing the surgery earlier vs later. I guess I was feeling it was inevitable so I may as well do it now, but now I'm thinking I may wait.

Julian is doing really well, though I'm not sure I see a lot of effect from the Timolol. It seems a little less red, but it could be my imagination!! It's only been a week, though, so I'll just have to be patient. I'll post some photos in another week or two and you guys can tell me if I'm just seeing things We will go back for a followup on December 15.

lrlt2000: I know what you mean about a bad place to have one, it's hard having Julian's right in the middle of his forehead. Sometimes I'm tempted to put a hat on him and then I think, forget it! I'm proud of him just the way he is. I definitely see such improvement in your daughter's H--she is absolutely beautiful either way but you must be pleased with the treatment.

JacobsMom--Thanks for the tip about the on-call dr, I wouldn't have thought of that. Are you here in the Bay Area? We're in Greenbrae.
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  #44  
Old 10-13-2010, 04:04 PM
jacobs_mom jacobs_mom is offline
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Carii: I live in the East Bay (Pleasanton). I think we're lucky to have UCSF so close to us. Many parents live much farther away from a specialist. Greenbrae is somewhere near Marin, right? I was looking for a parents' group for moms/dads with babies with hemangiomas in my area but couldn't find any. I would like my 6 month old (as well as my 3 year old) to see other kids with hemangiomas so they know there's nothing "wrong" with it. Are there any groups like that in your area? As for the doctor on call-- yes, call them if you see anything at all that concerns you. They have all been very nice. The only thing is the message goes through the answering service and the answering service will ask you if it's an emergency. Sometimes the answering service can be rude. If you want an answer right away, it's an emergency. Don't let the answering service make you feel like you should wait.
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  #45  
Old 10-14-2010, 06:17 AM
carii carii is offline
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Quote:
Originally Posted by jacobs_mom View Post
I was looking for a parents' group for moms/dads with babies with hemangiomas in my area but couldn't find any. I would like my 6 month old (as well as my 3 year old) to see other kids with hemangiomas so they know there's nothing "wrong" with it. Are there any groups like that in your area?
I'm not aware of any parent groups, but it wouldn't be a bad idea to try and get one going! I can post something on SMMC (Southern Marin Mothers Club) and GGMG (SF mothers club) and see if anyone else responds. If nothing else, we can get together sometime if you're interested.
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  #46  
Old 03-27-2012, 03:02 AM
nicole1985 nicole1985 is offline
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Hi, My name is Nicole. My daughter Jazmin is 4 months old, She has a haemangeoma on her left cheek. We have just put her on propanalol, going on day 12 now.The dose we have her on is 2.1 mls 3 times a day. Although i have noticed no change it is only early days. The reason i am writing is because i wanted to know whether anybody found side effects and i also wanted to hear some success stories.
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  #47  
Old 04-27-2012, 08:58 PM
smilo143 smilo143 is offline
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Anyone's childeren experience side effects? My daughter is 6 months and her dr. wants to get her on propanolol too. Here are her pics
http://www.facebook.com/photo.php?fb...type=1&theater
http://www.facebook.com/photo.php?fb...type=1&theater
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