7 week old son with Hemangioma on face and doctors advising propranolol - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-10-2010, 12:40 PM
quinner83 quinner83 is offline
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Default 7 week old son with Hemangioma on face and doctors advising propranolol

My son coby is 7 weeks old and has just been diagnosed with a Hemangioma on his cheek.We are just home from the hospital wher the doctors advised using propranolol to treat this and we have been looking everywhere online for advice and guidance and have been greatly lifted by some of the storys we have read on this site.Has anybody got any recent experiences of using propranolol??would greatly appreciate any storys negative or positive regarding this....many thanks Glen Quinn
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Old 06-10-2010, 02:32 PM
jkmorgan333 jkmorgan333 is offline
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We've been using propranolol on my 11 month old daughter for almost 3 weeks. We've noticed a little change in the size of her H, but I think if we'd have started it when it was in the growth phase we would have noticed shrinkage more quickly. From what I've gathered from this site, you get better results if you treat with propranolol during the growth phase rather than waiting.
As far as side effects are concerned, we've noticed very little. Her blood pressure and blood sugar are fine. I have noticed she seems a little more clingy and whiny. It could be her feeling discombobulated from the meds or it could just be her age.
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Old 06-10-2010, 02:44 PM
mperron mperron is offline
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Hi Glen,
My son started propranolol at 8 weeks old (he was born 6 weeks premature). He is now 6months old. I too was ambivalent about the drug but have no regrets. It really stopped the growth of the hemangioma and diminished the size considerably. My son has had no side effects.
My son prior to going on the drug saw a cardiologist in NYC (were from Canada). The cardiologist has had many accolades of being rated one of the best doctors in NYC so his opinion was greatly valued. He had no concerns with my son being on the drug. He did an electro cardiogram on my son to ensure he had no underlying heart condition. My son did not need to be admitted into the hospital for further monitoring.
I feel confident that we made the right decision in being proactive.
Congrats on your baby boy!!! Children are truly a blessing, hemangioma and all!
Melanie
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Old 06-10-2010, 08:36 PM
lbk0704 lbk0704 is offline
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Our daughter is 4 1/2 months old now. She was born with multiple hemangiomas in her diaper area. At 3 weeks old an ulcer began to appear on her right buttock. Within 2 months, this deep ulcer had grown so large that it basically was the size of her entire cheek. It was excrutiatingly painful for her and everytime she went to the bathroom, it was heartbreaking. She would scream in pain. She was not eating well due to the fact that during feedings she would normally have a bowel movement which would interrupt the feeding. She was not sleeping well, since even urinating would cause her to wake in extreme agony. Our baby was under a tremendous amount of stress both physically and emotionally. Just before she turned 3 months old, our Dermatologist recommended that we take her to a Cardiologist so that she could be evaluated and receive Propranolol. We did so and within a day or two, we saw considerable change in color and size of some of the hemangioma. It took about 3 weeks and then we began to see the awful ulcer miraculously showing signs of healing. Once it began healing, it took less than about 2 weeks to heal. COMPLETELY. She has had no side effects except for cold hands and feet in the beginning. The doctors have agreed it is best to keep her on this medication for at least another month while the hemangioma could still be in a growth phase. They do not want to risk a relapse and possibly another ulcer. We are very grateful that we had such remarkable success with this drug. It really was amazing to see how quickly it stopped the growth of the hemangioma and promoted the healing of the ulcer. Her days are no longer filled with the unbearable pain and she is a happy little girl. There are no words to describe how relieved we all are to have this behind us.
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Old 06-10-2010, 10:18 PM
annina annina is offline
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My daughter is on Propanolol as well (2mg/kg/day), she has a large facial segmental type haemangioma. She is now 15 weeks old and she has been using the medication for about 8 weeks. Before going on the drug we did brain MRI, echocardiography, ECG and blood test.
Yes we have seen a difference, it's not a huge difference but there is one and it's stopped the haemangioma from getting much larger!!!
No side effects so far however she will need to have monitoring of blood pressure and heart rate on a weekly basis while she continues to take Propanolol, which she may well need up until the age of one year or more.
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Old 06-18-2010, 12:16 AM
quinner83 quinner83 is offline
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Hi Melanie,thanks for taking the time to reply to my post i really appreciate it and after reading of your experience i am greatly encouraged that my wife and i are making the right decision in using propanarol to treat coby.We have been in hospital on and off now for 2 days having the required tests(ecg,echo scan,blood tests etc) done to determine whether coby will be able to have the meds and so far so good we would have had all tests completed but for an emergency in the hospital and the doctor treating coby being called away,back again tomorrow for which i hope will be good news.Im really glad your son is having no side effects and i hope the hemangioma continues to dissapear.I have a lot of family in Canada in the ontario,edmonton and guelph areas and have been on plenty of holidays out there and love the people we have met down the years and you taking the time to post has only strengthened my admiration for all things canadian,many thanks again
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Old 06-18-2010, 12:23 AM
quinner83 quinner83 is offline
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thank you so much for replyin to my post,i have had a few replys and have been greatly encouraged from what i have read,my son is currently going through the tests to decide whether or not he can recieve propanoral so are fingers are crossed that he can and we can begin treating it asap.thanks again for your reply,it is greatly appreciated....Glen Quinn
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Old 06-18-2010, 12:25 AM
quinner83 quinner83 is offline
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thank you so much for replyin to my post,i have had a few replys and have been greatly encouraged from what i have read,my son is currently going through the tests to decide whether or not he can recieve propanoral so are fingers are crossed that he can and we can begin treating it asap.i am greatly encouraged by the great progress propanoral has had for you and hope i will be celebrating the same results soon......many thanks Glen Quinn
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Old 06-18-2010, 12:28 AM
quinner83 quinner83 is offline
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thank you so much for replyin to my post,i have had a few replys and have been greatly encouraged from what i have read,my son is currently going through the tests to decide whether or not he can recieve propanoral so are fingers are crossed that he can and we can begin treating it asap.i hope it continues to work for you and your daughter can have a good life free from hemangiomas......thanks again for your reply its much appreciated Glen Quinn
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Old 06-18-2010, 05:02 AM
mperron mperron is offline
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Thanks for your kind words Glen. Canada is a great country but unfortunately can use some improvement in the healthcare system.

Just to update you I spoke with my son's doctor today, Dr.Waner in NYC, and he said that my son will likely need to stay on it till he's 10months old. Good news is that Dr.Waner does not think my son will need surgery. Keep us updated on the board! I can't imagine what I would have done without this forum. It's how I learnt about Dr. Waner, and the use of propranolol.
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