Over 60 skin Hemangioms and 5 on the liver. - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-21-2011, 09:00 PM
yassin yassin is offline
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Default Over 60 skin Hemangioms and 5 on the liver.

Hi,
I'm new to the world of hemangiomas and I m happy to find this forum.
My daughter was born last week with one H on her Tommy (skin). Each day, new H appears and the older ones becomes slightly bigger. (yesterday we counted 61 H over all her body). Also the biggest one (the first H in her tommy) measure 1cm with new ones very small..
We have been advised to perform an ultrasound scan to check if there are any internal ones in her liver. Unfortunately, they found 5 H with the biggest one measuring 7mm. They send me to King's college hospital in London in a special unit specialising in liver diseases for children's. While speaking to many doctors here they seems to be not worried about the skin H even if they are multiplicating in number and size. However, they are preoccupied with the internal ones which could cause some problems to the heart function.
They say that we should do nothing to the skin ones as they tend to involute later. However, we need to watch the ones in the liver and keep and eye on them. But we don't need to do something as they are very small.

Any Advice?
Yassin
London
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  #2  
Old 06-21-2011, 09:52 PM
spaatz1329 spaatz1329 is offline
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My daughter has internal ones as well in her perineal area. They have checked her trachea and not found any, they are doing an ultrasound on Tues to check her liver. So far she has just been in a watch and wait as well. Our Derm feels that the medication(propanolol) is enough of a risk that it would be better to wait until it is needed rather than treat preventatively. My daughter is 4 weeks today. Hope that helps a little!
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  #3  
Old 06-21-2011, 10:25 PM
yassin yassin is offline
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Indeed, any experience would help.
Good luck for you daughter as well
Thank you.
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  #4  
Old 06-23-2011, 09:20 PM
nickbar nickbar is offline
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I would encourage you to double check with VBF experts on internal lesions to make sure all the testing that needs to take place is being done.
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  #5  
Old 04-05-2012, 10:20 PM
yassin yassin is offline
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Hi everyone,
My daughter is now 9months and two weeks. I wanted to share with you my daughter experience and give you an update about her current condition.
After my last post the number of hemangioms increased up to almost 100 on her skin and 7 on the liver and as well they were increasing in size. They stopped increasing in number and size when she was 3 months. At that time I was in contact with many doctors in London, Paris and with Doctor Levitin. All the doctors adviced me to start with Propranolol given that got some hemangioms in her eye, perineal area( they were everywhere !) what happened next is amazing ! One of the biggest hemangioms (near her left ear) started changing color and a week later started to shrink, a month later, all the hemangiomas on her face, hands, feet almost disappeared completely (in total around 20), a month later the rest of hemangioms started shrinking and when she was 7month she had only one hemangiona left on her leg and now it become very small and almost gone. When she had 4 months she did a scan of the liver and the doctors noticed that the hemangiomas in her liver started to shrink. She did an ultrasound scan last week and it seem that they disappeared completely.
This is the story of my daughter with hemangiomas. I hope they will never come back! I hope that you children be all cured and become completely healthy.
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  #6  
Old 04-05-2012, 10:23 PM
yassin yassin is offline
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I wanted just to precise that she didn't took any medication
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  #7  
Old 04-06-2012, 02:23 PM
evanskl4 evanskl4 is offline
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Wow, that's great! So that just happened naturally, you never put her on the propanolol?
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