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Edema with no diagnosis of a 10 year old

My 10 yo grandson has severe edema in just his right thigh.  He has been seen at our local hospitals and now at Boston's Children's Hospital.  He has had many tests, scans and has seen over 20 doctors with no diagnosis.  The swelling is now moving into his buttocks, lower back and down into his knee.  He has no other symptoms, isn't sick or in any pain.  He has been told he is a medical mystery.  Has anyone else experienced anything like this and if so, what was your diagnosis?
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13167 tn?1327194124
For what it's worth,  here is a detailed list of possible causes.  I'd pay attention to those things that are listed as "rare",  and thus might not have been investigated by the doctors.

https://www.buoyhealth.com/learn/swelling-of-one-thigh
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