Our 17 day old granddaughter has been diagnosed with multiple hemangiomas. After having a scan she has been found to have these on her spleen and liver as well. We know very little about this and what to expect and treatments if any that may be available. Please if anyone could help or give advise we would really appreciate it, particularly in relation to the internal ones.
Hi Karen. I just wanted to say hi Although my daughter did not have any hemangiomas on any organs, she did have 4 including a "deep" Hemangioma under the skin on a lower eyelid. She was treated, as many others might also share with you, with propranolol which has had fantastic results. I'm sure that other parents will be on here to share theyr thoughts and experiences with you.
Thank you for your reply. I am hopeful that we will find some good advice on here from people who may have shared experiences. It's reassuring to know what can be done and what to expect. She has an apt next Friday at Great Ormond Street Children's Hospital so I'm sure she is in the best hands - is just a bit scary when you don't fully understand xxxx
If you haven't already, you can ask some questions through our Ask the Expert feature: http://birthmark.org/experts.php I would recommend especially getting in touch with Dr Tombris and also with Dr. Carpintero.
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