Propranolol and Hemangioma's - Mothering Forums

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#1 of 11 Old 06-30-2009, 08:47 AM - Thread Starter
 
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Are there any mama's on here that have used propranolol to shrink their babies hemangioma?

Did it work? Is it really necessary? Any insight?
Thank you.
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#2 of 11 Old 06-30-2009, 04:34 PM
 
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Hi there!
My dd developed a hemangioma around 3 wks old on her eyelid. We were vwery concerned about it bc of the location. We did our research and took her to a ped opthomologist when she was 3 mos old. He told us that it was not causing vision problems and was best to wait it out to see if it grew into an issue or went away. We were told that it would grow until she was 1 and then gradually shrink and usually disappear by 5.
bright red around 4 mos
same age
around 6 mos
Well, we must of gotten lucky, bc it never grew to thick, but was very red and has already begun disappearing. It is barely visible now and age 10 1/2 months. I'm glad we waited it out and didn't pursue medical removal.
taken today
Are there reasons why you need to remove it now or is waiting an option?

I'm Deborah, mama to Aidan, 11/02, Sean, 9/04 (my T21 SuperBoy), and Eleanor, 8/08.
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#3 of 11 Old 07-01-2009, 09:27 PM
 
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My own child does not have a hemangioma, but my niece does have one. It started showing at about 3 weeks old, it's located right in front of her nostril and pretty much blocks the whole thing. My brother and SIL were very paranoid about her breathing as a newborn and especially when she got a cold, it all got caught in the back of the hemangioma. They saw a few specialists, and ultimately decided treatment wasn't worth the risk. Supposedly it will start shrinking and be gone by the time she is around 5. They were given a steroid option, not sure if that's what propranolol is? She is 11mos now, and it hasn't changed too much, just the coloring a bit. I checked MySunflowerBoys picture of her daughter and my niece's is much larger, rounder and more pronounced...very noticeable.
Good luck with your decision.
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#4 of 11 Old 07-01-2009, 09:40 PM
 
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Two of our dc have had hemangiomas. Both were on the side of their neck/underside of their jaw...completely out of the way places that posed no risks for interfering with their development, and little risk for injury. I would only treat a very large hemangioma that was in a spot that gets hit, or interfered with eyelid function or, like the pp, blocked nares (I would let it go if it was only one nare, but both might need treatment).

I will say that the "gone by age 5" thing hasn't worked out for us. Dd is 6.5 and while her hemangioma has faded quite a bit, it's still there. At it's largest, it was about 1.5 times the size of a quarter and 3-4 mm thick. Ds's is much smaller, and people often think he's just colored on himself with a marker.

Dana, wife to Marc, mama to Amanda - 12/5/02, Bethany - 6/2/04, Christina - 3/17/06, Daniel - 5/7/07 and Elizabeth 6/1/09.
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#5 of 11 Old 07-26-2009, 10:46 AM
 
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My Daughter has been on propranolol for about six weeks now. It has just started to being to shrink, but only very very slightly. Her hemangioma was ulcerated so bad that she developed a severe infection. Once that cleared, we began to notice her scab started to fall off and her hemangioma began to get softer. We just spoke to a specialist and to all those moms with DRs that say "Oh it should go away -by age 5 or so..." DO NOT LISTEN TO THEM!!! Not all hemangiomas go away by themselves. My daughter will need surgery when she is about 9 months or so. It is best to start treatments RIGHT AWAY! However- it does depend on how bad it is. My daughter's is on the side of her right cheek, is the size of a half dollar, and sticks out as far as a golf ball. As a mother, we know when something is not right. I am glad we saw a specialist and are seeking treatment and not listening to the other DRs who just said to wait it out. Good luck!!!
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#6 of 11 Old 08-08-2009, 02:10 AM
 
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My DS has three hemangiomas, one is on the left side of his forehead above his eyebrow. It is about the size of a quarter but sticks out about 1/2 inch. It also appeared we he was about three weeks. We saw a specialist when he was 4 months old and at the time he said to wait and see how it developed as he was not a proponent of steroids, since the side effects can be so bad. Now at 13 months he has become a big proponent of propranolol and we are scheduled to see a cardiologist to assess is ds is a candidate. I am concerned about using a drug to treat it, but the specialist does not think the one on his forehead will resolve by itself as it sits right up against bone and the only other alternative is surgery, which is a much higher impact resolution than the propranolol. At his age it may not even work, but he is starting to get stared at quite a bit and I would like to shrink it some before he is old enough to notice. I am open to teaching him about acceptance and being different and removing it some day when he is older. But the propranolol is supposed to be a pretty low impact solution. Would love to hear any other insight from others on the treatment and I will post back here if we decide to move forward.

Jhuhn1034 - has your daughter experienced any side effects? I have heard that it can sometimes make them slow or tired....?
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#7 of 11 Old 08-22-2009, 07:44 AM
 
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My dd has 5 of them and one internally...we have been using prop for 3-4 months and they lightened significantly. The internal one shrunk to almost non-existant. We're very happy we made this decision.
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#8 of 11 Old 01-06-2010, 03:47 PM
 
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Hi -- I'd like to revisit this thread and see if there are any other experiences with this relatively new treatment.

DS is scheduled to begin treatment in a couple weeks for a hemangioma above his eye. We will also require an MRI and a hospital stay.

He is 5 months old. I am mostly nervous about the MRI and the anesthesia needed for that, so I could use some reassurance there. I'm also wondering about breastfeeding in the hospital. And I'm also interested in hearing any long-term stories with propranolol treatment. I know it's a new treatment, and I'm curious to hear about anyone who has ceased treatment and if the hemangiomas returned.

Thanks!
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#9 of 11 Old 02-16-2012, 06:47 AM
 
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I wanted to write a few words for parents out there whose child has a hemangioma and a medicine treatment called Propanolol.

 When my daughter was born in January 2009, a hemangioma developed on her face -- on her eyelid, temple and the side of her face to be exact. It started off as a purplish, blue flat mark. Almost like a bruise. Within one month it started to rise and become increasingly red. I had no idea what to do. The doctors kept telling me it was 'strawberry mark' and will go away.

 It didn't. In fact, it grew. It was a dark red raised mark. Her eyelid was quickly closing shut and her cheek was swelling. Still - I had no answers. She didn't seem in pain. At least that gave me comfort.

 For three months, I went to doctor after doctor after doctor. Finally I found a doctor who said to me "listen, I am not specialized in this area so I am going to refer your daughter to a general surgeon".

At least I was getting somewhere.

We went to see the Surgeon, who took one look at my daughter and immediately sent us to see a dermatologist. I am very very lucky to live in a city that has a specialized Children's Hospital. Once you get referred in, you have many resources.

 We saw the dermatologist that day. Who explained what a hemangioma was. His concern was that it appeared my daughter had a segmented one. The mass commenced behind her eye socket - flowed to the eyelid, cheek and inside her mouth. This was a sign of a possible disease called PHASES Disease.

 It took a lot of testing - x-rays, ultrasounds, MRI, cardiograms and countless consultations. I also have to admit that I was adamant that some kind of treatment be done. I pushed and pushed. I even ran around the hospital chasing my daughter’s medical records for doctors. I wasn't waiting for them to be 'sent' along.

 I was very lucky that her dermatologist specialized in hemangiomas and had started using a drug called Propanol to treat the hemangioma. Propanol is a very old drug -- most commonly used for heart issues. It lowers the blood pressure. It was found that it has a positive result in decreasing hemangiomas. What I found frustrating is that there is no research of this on the internet. No one to provide their experiences. I can't tell you how nervous I was. But it was something that I felt we had to do. It is a much better solution than giving my daughter steroids (with all their side effects) or surgery.

 When my daughter was 5 months old, we started the treatment. Three oral doses a day for one year. I had to check her heart rate three times a day as well.

We also had to go into the hospital every second day to have her vitals checked. And blood work done weekly. Thank goodness, she always checked out ok.

I admit -- it was tiring. some days, I didn't want to go the hospital AGAIN!

 

This was my life for one year. Everything revolved around my daughter, her medicine and the hospital.

 I am very, very glad to report, that over time her hemangioma decreased. It was slight at first. It went from an angry red, to a softer red, then pink. Then its size started to decrease. Over time, months in fact -- it faded.

She is now 100% off the medicine, and I haven't seen any side effects. The only thing I see is that my daughter is flowering -- minus the gigantic hemangioma on her face. She still has a faint pink mark. In time, I am told it will go away. I don't even notice it anymore. She is thriving and so am I.

 I guess the point of this long winded story is to say that there is help out there. There are others in your same situation. We know and understand the emotional toll it takes on you. Don't be afraid to ask. Don’t take ‘wait and see” for an answer. And remember: YOU are your child's voice. I can't say enough about the benefits of using Propronol. I truly believe it saved my daughter.

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#10 of 11 Old 06-24-2012, 05:23 PM
 
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My girl started at two months old. Had a hemangioma between her left eye and nose. It looked like a black eye at first, I thought she hit herself with a toy. Then a week later it turned from dark blue,black to a blue purple red mix, and it started to swell. I took her to our dr. The dr said its a hemangioma. We saw a specialist, and now she is 4 months no coloring! The area has started to disappear, shrink in size. We have our follow up visit tomorrow, we will most likely keep her on the meds until 9 months old via the first dr appointment. Hemangioma near the eye often are aggressive and need to be watched carefully. I am happy with the results. I would recommend the treatment. Also propanolol is great for baby's mood lol. Just google propanolol uses!
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#11 of 11 Old 06-27-2012, 06:50 PM
 
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Dear kjhdavis

 

I am so happy I read your post because it says exactly what a mom in this situation wants to read. My daughter is 3 months old and she also has one in her right eyelid. I live in Miami and she is being seeing at the Bascom Palmer Eye Institute but I also have an appointment with a dermatology at the Children hospital. I wanted to ask you in what state you live since you also mentioned a Children hospital in your post. Thank you again!!!

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