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We just found out out 8 month old daughter has an "unnumberable" amount of what they believe to be hemangiomas on her brain and some have bled. She also has 1 on her spine and some type of cyst on her spine, her spleen as well is covered in hemangiomas. We are in the midst of trying to diagnose and treat her she has not responded to propranolol. Any advice or success stories would be helpful. She has doctors stumped

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Our daughter (6months) has Diffuse Neonatal Hemangiomatosis and has multiple brain lesions, liver, iris and skin involvement. Not sure if this is what your daughter has, but is sounds like possibly. My heart goes out to you and what you have/are going through. All of her doctors have never seen what she has, so we are going to Boston Children's next week-they have a Vascular Anomalies Clinic there. If you can not go there, they can also do a case review of her records, too. Praying for you.
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