Vascular Birthmarks Foundation Forum - View Single Post - Lymphatic Malformation of Tongue
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Old 10-31-2006, 05:58 PM
frustrated dad
 
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Default Lymphatic Malformation of Tongue

Hello,
I am new to this board and in search of some help for my Daughter.

She is a beautiful, almost 16 yr old that has repeated problems with her tongue.
It started when she was around 8 yrs old with a biopsy preformed by an ENT Dr. to check out red bumps on her tongue. After the biopsy, my daughter's tongue swelled to a point where she could not close her mouth and swallow her spit. She was put on prednezone which helped reduce the inflamation. It seemed as though she would swell up when she had some sort of upper respatory illness. She has been tested for allergies and has alot of them...none associated (?) with her tongue.
Through the children's Hospital of the Kings Daughters, we realized my daughter had lympangioma of the tongue. A Dr. Waner (??) preformed the first laser surgery which seemed to help her significantly.
The laser surgery on her tongue was to reduce the amount of "buds" (clear or red fluid vessicles). This enabled her to have reduced pain and swelling of the tongue, along with the look of a normal tongue (she gets alot of questions from her schoolmates about what is wrong with her tongue).

She has had several more surgerys preformed by a different doctor that was trained by Dr. Waner. It seems the swelling and the pain are more re-occuring than ever. Everytime surgery is preformed, prednizone is prescribed to keep the swelling down. I don't like my daughter on steroids.
Recently the tongue has swelled for no reason. She had an episode last night and we currently have her on prednezone to reduce the swelling.

My Questions:
1.) How do I contact Dr. Waner ?...I feel in my heart he helps hold the key to helping my daughter out.
2.) Has anyone out there had similar experiences?
3.) What do you think about this OK-432 ? Does it work as well as they say ?
Does it have the FDA approval?
4.) Do I have my head in the sand looking for some miracle, or something that may be obtainable, or should I just do like my x-wife says...that it's all ways going to be there ?
Thank you so much for your help,
Bobby
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