Multiple hemangiomas - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-29-2011, 12:25 AM
Steph42984 Steph42984 is offline
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Default Multiple hemangiomas

Hi, all! My son is 2 and a half months old and currently has 12 hemangiomas. Some are just about the size of a sesame seed, but he has one on his back that is raised and about the size of a quarter, and one on his face that is also raised, and about the size of a pea. From what I have read online, when there are multiple H's, there is a higher chance of there being internal H's.

We saw my son's pediatrician regarding the h's, and she said they don't worry about internal ones unless the external ones are over an organ. This seems crazy to me, and I haven't been able to find if it is true or not. She did refer us to a dermatologist, which we have an appointment with next week, but I feel as though we should still get an ultrasound for him. Has anyone had their doctor tell them the same thing?
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Old 05-29-2011, 11:34 AM
missy missy is online now
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Hi and welcome!

Other parents will be in soon to address that ... I just can't let a post go unanswered without saying hi!

Also, if you will let us know where you are located, we might be able to hook you up with a specialist.

And we do have an internal lesion expert at http://birthmark.org/experts.php and you could ask that question there.

Missy
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Old 05-29-2011, 09:13 PM
KatieG KatieG is offline
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I have a friend whose daughter had multiple and she was sent for an ultrasound and MRI and she did indeed have internal ones. They just had to be monitored.

For your sanity I would go see a specialist and also request an ultrasound or an MRI to be sure.
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Old 05-30-2011, 07:51 PM
tessaemay1981 tessaemay1981 is offline
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Hello. My son has 7 H's. He goes to Johns Hopkins for treatment. Our doctor said that if he is growing at a healthy rate and sleeping properly, then, we didn't have to worry about internal H's. She said that if he had any, they would also be superficial and go away on their own. I guess every doctor has their own oppinion on the subject. My son has been on propranolol for the past 4 months with great results.
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Old 06-01-2011, 03:39 AM
mensell09 mensell09 is offline
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Hi,
My daughter is 4 months and she has a H on her nose. I asked about if there could be internal H's. I see a specialist and he told me because she only had one not to worry, it's more common in children that have more than one.

But like I always tell people I would rather be safe than sorry.

A mother always knows when something is wrong and if you feel that you need a ultrasound or MRI do it if your able to. What could it hurt. But just to let you know when they talked about doing an MRI on my daughter they told us she would have to be put to sleep, for an ultrasound she don't.
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Old 06-01-2011, 12:10 PM
tlampley3 tlampley3 is offline
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My daughter also has multiple hemangiomas. Our first pediatrician told us there was nothing we could do, and not to worry about it. He never even mentioned the possibility of internal hemangiomas! Thankfully, I did my own research and found this site! I got her a referral to a pedriatric derm. and she has been on propranolol since 3 weeks of age, with AMAZING results! We did an MRI and a bronchioscope and found one in the back of her throat. I would say if you are concerned, to ask for tests to rule out internal hemangiomas. Better safe than sorry! They did have to put Livy to sleep for the MRI, but it really didn't take that long. Even though it was a little scary, I'm glad we did it. Congrats on your son and best wishes! :-)
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Old 06-01-2011, 07:39 PM
nickbar nickbar is offline
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It is my opinion and many of the specialists that it is a good idea to have an MRI to rule out internal lesions. If you don't mind sharing where you are located I can try to refer you to a specialist near you. It is very important to have accurate information, and all too often we hear of misinformation in the medical community. This field has made HUGE advances over the past few years and simply put, not enough doctors have had the proper training or information regarding hemangiomas and malformations...and any syndromes connected to the vascular lesions.
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