On April 30, 2010 my 7 year old daughter was sent home from school with a fever and severe headache. By that evening we were at Tx Childrens with 105 and out of control headache. They did a spinal tap suspecting meningitis and found a pressure of 33.5. Within 24 hours of getting to the hospital we were sitting on the neuro floor with neurosurgeons and neurologists telling us our daughter had something called Crouzons syndrome with a Kiari Malformation, what?? That began our 19 day stay that consisted of numerous scans, seizure like episodes where she would become completely nonresponsive with rapid eye movement, vomiting, and memory loss. We are now on our third hospital admission since April 30 and she continues to get worse and it seems as though the doctors are stumped because some of her symptoms are presenting as "normal" Can anyone help with advice?
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