Yes, she has had almost every test you can think of:
multiple MRIs, which show the damage in her right frontal and parietal lobes and also a MR spectroscopy that showed elevated lactic acid in her right side; several EEGs; a lumbar puncture, which showed elevated lactic acid; a bunch of blood tests that came back negative (incl. DNA studies - most were negative except some polymorphisms, which may be normal); and a muscle biopsy - we are waiting for the results of the biochemical study, but everything else came back normal. I guess these tests can have negative results even when someone has the condition. It is all very frustrating.

I will find the children's forum. Thank you for pointing me in the right direction...

Ann