Vascular Birthmarks Foundation Forum - View Single Post - New to Lymphagioma-9month old baby girl-advice please?
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Old 04-19-2010, 07:30 PM
Aolmstead Aolmstead is offline
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Join Date: Mar 2010
Posts: 31
Default Is it common to just wait and observe for LM

We went to see Dr. Venuela, who is the director of UCLA Ronald Reagan radiologist and came highly recommended by Dr. Levitin. Our first visit was basically discussing my baby's (10month old) condition and treatment options. He concluded that since she does not have any physical signs of distress or obnormal swelling, he recommended us to wait and observe. He wants her body to heal naturally and basiclaly wants mother nature to take it's course without any unnecessary medical intervention...for now......

Is this common to wait and observe?? I'm so nervous for another flare up...She has macrocystic lymphangiomo on left side of neck which was treated with doxycoline/slerotherapy 12/31/2009. The big gold size swelling went down and it looks normal. But follow up MRI 3/2010 reveals that there is still some residual lymphatic fluids trapped in her chest cavity/left lung surroundings......Again, she looks like a normal healthy baby and you could never tell....she is coughing alot and makes me worry so much knowing there is a huge mass/cyst fluid inside her....

Has anyone had the same experience?

By the way, can a child out grow lymphangioma?

To Sweet pea-Thank you for sharing your thoughts. I truely appreciate it. You mentioned at the end you can do everything the same like a normal person but appears different. What area do you have the lymphangioma? Is it physically noticible? Does the size get any bigger as a person grows? If you don't mind please email at arisa_hayama@yahoo.com so I can share my cell # to you; I would love to talk to you about my baby daughter...As a mother I want to learn as much about this condition.....thank you....
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