Don't use steroids!! My daughter uses liquid propranolol

Candice - posted on 04/06/2009 ( 15 moms have responded )

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My daughter was born with her hemangioma on her right shoulder. It was misse diagnosed and eventually started ulcerating. We ended up taking an emergency trip to Seattle childens hospital where they there put a wound vac on her and put her on liquid propranolol. I guess it has no side effects like steroids and works quicker and more effciaent!! We have bandage changes because it still bleeds and oozes. She started the med in Oct 2008 and it has shrunk in size and shape. They found out about this med in June 2008 that children with hemangiomas it works wonders. She is the 12th infant to be using this medication in the US. The med has been out since the 70's I believe but it is commonly used to treat blood pressure. So it has been out for awhile. I am sooooo glad there are other moms wih the same thing happening!!!! I am probally the only one though in montana! Candi

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Trudi - posted on 01/09/2014

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Hi my son just got diagnosed with a hemangioma on the tip of his nose at six weeks. We are very concerned and want to take care of it the safest and fastest way possible. The doctor gave me a referral to seattles children but said they dont usually treat it unless it affects his breathing. Well since its on his nose I am really upset and want to knkw anybodys opinion on that and how their child is now since it looks like some of these were posted a while ago. Anything to help ease my mind please!!

Olivia - posted on 03/09/2010

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My son is 9 months and he has a hemangioma on his cheek and also at 2 months we started him on propranolol it did stop it from growing and has shrunk. I hate it for him but at the same time I feel blessed that he is a healthy, happy baby. We go back to the Dr. March 23 and they are going to start slowly taking him off of the medicine. I hope it goes away..

Melanie - posted on 01/05/2010

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We were told that the shot could make my daughter go blind immediately so we opted not to go that root, that is when we started her on the oral steroids but the side effects of that were so apparent we decided to ask the doctors to put her on propanalol. We were also told the shot might not work for her hemangioma because hers is considered a difficult hemangioma. Just a little clarification Propanalol is not only used for heart conditions it is also used for depression and a wide range of other conditions as well. Mostly it is used as a blood presure medication and that is why it works on the hemangiomas. It helps relieve the presure on the misgrown veins helping the body to naturally stop the growth of them. Did you doctors warn you about the side effects of the shot because it is the most volitile of all the different treatments? I did all my research myself and then made an informed decision, at the time that we put her on the oral steroids there was not enough information as to whether the propanalol would work on all hemangiomas. As soon as the clinical trials were being done and I was able to get information on the trials we switched from the steroids. The safest option for any child is the propanalol but some children with internal hemagionas that effect thier airways and such need to be put on both the steroids and the propanalol so that the growth of the hemangioma can be stopped immediately. These internal hemangiomas can cause life threatening problems so it is more important to treat them with something that is assured to work. We were at childrens yesterday and there was a new doctor checking my daughter out and he started to tell us about the propanalol and I cut him off and told him my daughter was the first in Canada to be put on it and I told him what I knew and he informed me that I knew more about it than he did lol. We as parents know what is best for our children and the doctors are often far to busy to pay close attention to each individual. Alot of doctors will decide on one type of treatment and use that on every child with that condition because it is easier. I hope everything is going well with your little one and that her hemangioma fades quickly :) With treatment it should be gone before she goes to school :D

Meghan - posted on 12/09/2009

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i take my daughter to the seattle childrens for her lip hemangioma and they talked about that the propranolol. we arent to sure about it since the med is usually used for the heart. we just had the steriod shots done last month and they seem to be working good, it has stopped the growth, we go back in january for a follow up.

Melanie - posted on 11/03/2009

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Quoting Brigette:

I thought propranalol was a steroid? Or maybe I misunderstood and it's just a different form :)

My son, Robin, has a hemangioma on his cheek and at 2 months old (last sept) we saw a pediatric dermatologist in TX that specializes in hemangiomas. We began treatment with propranolol and I do believe it stopped the hemangioma from growing bigger in size. I also saw it soften up and fade a little in color. We weaned Robin off propranolol in March of this year (so about 6 months of medication). It hasn't really shrunk in size since then but at least it's not getting bigger or ulcerated anymore.



Hi Bridgette,



 Thanks for the question. No propanalol isn't  a steroid. It is used to treat all kinds of heart problems including blood pressure and angina, I would assume that is the reason it works on vascular tumors so well :) Just wanted to clarify so that other parents reading wouldn't worry.



Sincerly Melanie



Admin.

Brigette - posted on 10/13/2009

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I thought propranalol was a steroid? Or maybe I misunderstood and it's just a different form :)

My son, Robin, has a hemangioma on his cheek and at 2 months old (last sept) we saw a pediatric dermatologist in TX that specializes in hemangiomas. We began treatment with propranolol and I do believe it stopped the hemangioma from growing bigger in size. I also saw it soften up and fade a little in color. We weaned Robin off propranolol in March of this year (so about 6 months of medication). It hasn't really shrunk in size since then but at least it's not getting bigger or ulcerated anymore.

Tiffany - posted on 09/10/2009

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Yep my daughter has a hemangioma on her face and until we had her heart checked over for any problems she was started on the propranolol and weaned off the steroid,much less complications!

Melanie - posted on 09/09/2009

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Quoting Melanie:



We go to BC Childrens on the 15th of April to start propranolol treatment. Lets hope all goes well. Will keep u informed.






Analisia has been off the steroids now for over 3 months. She is doing way better. Within 3 days of being off the steroids she was crawing, 4 days talking, and 7 days pulling herseld up on stuff. The propranalol works much better and so far my daughter hasn't experienced any side effects.

Sarah - posted on 08/05/2009

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I will have to ask my Dr. about putting my daughter on propranolol. My daughter's old Dr. told us it would go away by the time she turned one and well it hasn't gone away. Then the Dr said it will be gone by the time she turn's 2 well she will be two next month and it's still there. Yes it has shrunck down in size but not that much. I was told by Lillian's Dr that there is nothing to do but wait until it gose away. Now I Know to ask about the treatment that you are using and cross my fingers I don't get shot down again.

Melanie - posted on 04/10/2009

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We go to BC Childrens on the 15th of April to start propranolol treatment. Lets hope all goes well. Will keep u informed.

Melanie - posted on 04/07/2009

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A hundred thanks hun. We just weened Analisia down to 3ml a day of steroids and her eye started to swell again. So decided to advicate for my little angle and I sent pics to her team @ BC Childrens Hospital of her face this morning. I asked if we could do the propanalol treatment and they said yes. So they are trying right now to schedule us in @ the lastest she will start treatment on the 20th. She will be the first in Canada. Until then we have to up her steroids to 5mls a day so that her eyelid stops swelling. I hope I'm making the right choice, but at least I know the steroids won't be hurting her anymore :) Thank you Thank you :)

Candice - posted on 04/06/2009

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Well they to were experimenting and it is not used with steroids. my daughter was only four months old when she started the treatment. The only procedure was to have a ct scan to make sure there were no internal ones and her heart was healthy. It is experiment, but I saw pics of a baby just like yours an after the propran treatment the baby had fully developed eye function back. It is so cool someone else is going through almost the same thing!!!!

Melanie - posted on 04/06/2009

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If we had opted to try the propanolol Analisia would have been hospitalised for the treatment because she was only a month old. We live on Vancouver Island and have to travel to BC Childrens Hospital, but I can't imagine traveling as far as you do.

Melanie - posted on 04/06/2009

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Oh we also live up in BC Canada and our laws here on new treatment options are very strict. My baby's dermatolagist was talking about doing a research study on the propranolol. They'll have to do a lot before they'll use it here.

Melanie - posted on 04/06/2009

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Our doctors had only just heard about this treatment when they started treating Analisia for her birthmark and they didn't want to try anything they hadn't thoroughly researched.  So far the info they had was that that it was used in conjuction with steroids and had shown impresive results. It was found by accident treating a child with blood presure problems who had a birhtmark. It is still in the testing stages and our doctors at childrens wern't ready to try it.  Plus Analisia was a month old and her eye lid was swollen shut and uncerating so they had to do something immediately.  She has stigmatism and wears glasses now because of the presure on the eye lid.   It's actually very common hun 1 in 20 children are born with them, but it is most prolific in asian children.

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