Vascular Birthmarks Foundation Forum - View Single Post - Rare form of lymphatic malformatiions can anyone relate
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Old 09-25-2008, 09:41 PM
justfuz justfuz is offline
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Our daughter was diagnosed with LM at 9 months, she is now 3. She was born with it and it wasn't until we saw a dr at Mayo Clinic that we knew what it was. The location of hers is on the right side of her face, from her hairline to her mouth. She also has a cystic nodual in her cheek. Plus the roof of her mouth is lined with it. She has had 1 CT and 5 MRI's to continually monitor it. Due to my insurance coverage of "out of network" being 20% more than in network, we went up to UW Madison. Within the past month we just found out that her right eye has only develloped 9 months along, so now she has to wear a patch on her good eye for 6 hours and glasses all day. They are not sure if this is caused from the LM or what. We have an apt. to see another vascular specialist in Milwaukee next month. Last nite she was complaining that it was hard to swallow and her throat hurt. I took a look and the top of her mouth was black and pusy looking. My wife and I didn't really sleep lastnite, worring that it was swelling up. Saw a dr today and were told that she must have scraped the roof of her mouth and opened the lm up, causing it to bleed and get infected. So now, she is on a soft food diet in an attempt to let the roof heal. We want to go back to Mayo but not sure or just wait to see the other dr next month. Its so hard with the lack of answers but, as I've been reading, they're really are not any. Our current focus is just to monitor and see what it does.
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