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  #1  
Old 07-17-2008, 01:45 AM
kguy0515 kguy0515 is offline
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Default Advise on what to do.

I'm new at this so please, bear with me. My daughter was born 9 weeks ago. She developed a strawberry hemangioma on her upper left colar bone. She also had another birthmark between her eyes. The one on her collarbone has grown, but the other hasn't. Since then there have been more. She also has one under her tongue, on the inside palm of her hand, on her thumb, on her back near her spine. (These are the ones that seem to be getting bigger.) At her 2 week check up the doc was concerned with the growth of her head. He scheduled an ultrasound to rule out Hydracephalous. The scan found what they called a brain bleed. He referred us to Neuro-Natalogist and he seems to think it could be a hemangioma, but reccommended against getting an MRI. Said the risks of the sedation was greater than the risk of what it could be. I seem to be jumping around and I apologize but this is how it has all happened. So, it is now our 2 month check up with the pediatrician and he has now recommended going to see a dermatologist, since I have pointed out that she is still getting more birthmarks/hemangiomas. So I'm rather puzzled on what to do. I have done some reading and it seems to tell me that if my daughter has more than one externally that they could be internally also. Should I request an MRI? I'm really confused. The neuro-natologist said if they did find out what was on her brain its in a spot that they would not treat it. So should we be doing ultrasound to see if this spot is growing and possibly a hemangioma rather than a brain bleed? I have so many questions. Any advice would be great. She's 9 weeks old, how long are these hemangiomas going to continue to "pop up"?

Last edited by kguy0515 : 07-17-2008 at 02:48 AM.
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Old 07-17-2008, 06:46 AM
nickbar nickbar is offline
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Hello,

It is very important that your child is evaluated by an experienced vascular specialist. Not all specialists (derms. etc.) have enough experience with hemangiomas to know what needs to be considered with multiple h. Please email me your location and I can try to find someone closest to you to evaluate your baby. There are risks that need to be ruled out when dealing with multiple hemangiomas. Yes, she should have a full body MRI.

Please let me connect you also with top expert opinions on your daughter's case.
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Old 07-17-2008, 04:45 PM
jgoodman0814 jgoodman0814 is offline
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i agree with Corinne. A vascualr specialist would be who i would go see. especially that there are so many h's. i was always told that if there are more than 3 your should have an mri done. good luck!
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