Propanolol works with NO side effects!! - Vascular Birthmarks Foundation Forum
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  #1  
Old 02-05-2009, 02:48 PM
Dawn and Baby Presley Dawn and Baby Presley is offline
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Default Propanolol works with NO side effects!!

http://www.facebook.com/album.php?ai...0&id=819200444
this is my Facebook Album dedicated to Presleys Hemangioma progress!! Please view it and ask your Drs if Propanolol can be used on your children!
Our Daughter is doing amazing on it!! we noticed a difference at the 24 hr mark, and then it just kept getting better, i will keep adding pics to the album so check back weekly!!
Thinking of you all
Dawn

Last edited by Dawn and Baby Presley : 02-05-2009 at 03:05 PM.
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  #2  
Old 02-05-2009, 03:29 PM
khubbard khubbard is offline
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Wow! I am so glad that you found something that worked for your daughter. She is precious, by the way. My little girl just started propranolol (her first dose was this morning). She's 6 months old. We are hoping for positive results, too!
http://hubbardbabynews.blogspot.com
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  #3  
Old 02-05-2009, 04:48 PM
Dawn and Baby Presley Dawn and Baby Presley is offline
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Im also glad that you are starting this as well... We have been monitored very carefully as it does lower the heart rate, I did as a overprotective mom expect my little girl to be sleepy and not as full of life as she usually is...but not the case at all....Shes totally fine!! no side effects at all!! We were admitted twice seeing as this is a very new treatment and the Doctors wanted to learn as well as watch her to make sure they were getting her heart rate at the right level.
Have you read the protocol on the drug?
Praying for a awesome result!!!
Dawn
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Old 02-12-2009, 02:48 AM
NJW12 NJW12 is offline
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Great to hear! My son is supposed to start this treatment next week and will also start it in the hospital. I would be interested in reading the protocol on the drug, if possible. Thanks!
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  #5  
Old 02-12-2009, 12:31 PM
Dawn and Baby Presley Dawn and Baby Presley is offline
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This is the Protocol i was given to sign before treatment! Hope this gives you some useful information.

Background: Infantile hemangiomas are commen vascular tumors which usalluy involute spontaneously and do not require specific treatment. Ocasionally however, systemic treatment to shrink the tumor is indicated is it is in a location where a vital function could be comprised (eyelid, throat), if it is ulcerated and bleeding, disseminated hemangiomatosis, or severe disfiguring facial hemangiomas.
The first-line systemic treatment in the past is Prednisone, which is a corticosteroid, in high doses. Treatment usually was required for 6-12 months and adverse effects, were common such as hypertension, Cushingoid facies, growth reduction, increased risk of infection and others.
In June 2008 a French study was described in a letter to the editor in the New England Journal of Medicine in which they used Propranol, a well known cardiac and blood pressure medication in infants with problematic hemangiomas with excellant success.
Since then, Pediatric Dermatologist have starting using Propranolol as a first-line treatment because it apprears to be safer and more effective than the high dose Prednisone. The Dermatology Clinic at St. Justine Hospital in Montreal has at least 20 patients on this medication so far with positive effects.
Propranolol is a non-selectie beta-blocker. The proposed mechanism of action in hemangiomas includes casoconstriction and decreased expression of factors that promote excessive blood vessel growth, as well as triggering apotosis which causes involution of the hemangioma. The most common adverse effects are bradycardia(slowed heart rate) and hypotension (low blood pressure). It can aggravate bronchoconstriction (wheezing) in patients with asthma.

Proposed protocol:
A. Before starting treatment:
-Full History and physical examination. Do not use in asthmatics.
-Electrocardiogram
-Blood Glucose
-Medical Photography

B. Treatment and Monitoring

-initial dose 0.16 mg/kg. every 8 hours
-Monitor pulse, BP and glucose daily- if normal, double dose incrementally to a maxium of 0.67 mg/kg. per dose (maximum 2mg/kg/day). Chart on spreadsheet.
-When dose stable, monitor pulse, BP and blood sugar every 2 days.
-Photographic documentation every 1-2 days

Consent with signatures.

References:
Propranolol for Severe Hemangiomas of infancy, NEJM: Vol 358:2649-2651, June 12, 2008
More on Propranol for hemangiomas of Infancy, NEJM: Vol 359:2846-2847
Person Communication: Dr J. Finlay (Pediatric Cardiologist, IWK Health Center), Dr. Julie Pwell (Pediatric Dermatologist), St. Justine Childrens Hospital)

Last edited by Dawn and Baby Presley : 02-12-2009 at 02:00 PM.
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  #6  
Old 02-14-2009, 02:54 AM
nickbar nickbar is offline
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This very well could be a wonderful new option for treating hemangiomas. I just want to caution people to make sure you have all the facts and risks directly related to your child. We've heard many positive outcomes fromthe use of beta blockers. The study done on infants for life threatening h. were only 11 children. While the use of Propanonol is not new, the use for treating hemangiomas is. We are very hopeful.

I did recently have a parent report they had a serious complication related to the beta blocker. You can read her story on msnvb.org Not to scare anyone away from the use (and all treatment or lack of comes w/risk)...but it is important to know as much as possible before starting a treatment (or avoiding a treatment).

Corinne
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Old 02-16-2009, 12:44 PM
Dawn and Baby Presley Dawn and Baby Presley is offline
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I just want people to know that the information i post on the site, is stickly from my experiances only, i have said before i am not a Doctor, but i take this very seriously and i research to the point that i could talk about it in my sleep. I respect everyones opions, and i understand that this is a new treatment, but seeing as my child had all the pre screening done, and then some cause i asked for a ECHO to be done prior, and seeing her over the first 48 hrs in the hospital, i have no reason to be afraid. We here are in the best hands, the Pediatrics ward at our hospital is there for us at anytime. If i want her BP taken at anytime i can just walk in and they are happy to look at her, right away. I have Dermatologist call me at home from there office, just to see how we are making out.
Im not nieve to what can or could happen, but i have expressed my concern about this to many specialists, physicians and Dermatologist, before proceding. Thats why i have so many health care professionals watching over us, we are only the second child in our province to be on this med, and with our success and i am 100% confident that we will have success, we will in the future be leading the way for other children. SO i just ask that people understand that this is my point of view from our experiance. and as i stated in the protocol, this is only to be used in life altering cases, or in the case of our daughter where it is oozing, bleeding and infected.
Thanks for respecting and understanding
Dawn
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  #8  
Old 02-18-2009, 09:45 PM
nickbar nickbar is offline
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Dawn,
It sounds like you've done all your homework and had all the proper care and work up done. I have not seen this in all cases (no fault here, just physicians and/or parents not fully aware) and would like to have everyone considering beta blocker to follow your work and have the same attention to details prior to treatment.

Please keep us updated.

Corinne
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