pachygyria

Hello,  my daughter now 16 was diagnosed at 12 with a rare condition called pachygyria(neuronal migration disorder). She suffers from moderate cognitive impairment and epilepsy.  Before I did any interventions of my own.  She had like 6 grand mals in one day.  Now she has about 4-6 grand mals a year with about 15-20 petit mals a year. I've tried to control her seizures with drastic lifestyle changes and herbs for symptomatic seizures.  Is there anyone out there who has this condition or a child with this.  I feel like I'm all alone with this.  The doctors only prescribe medications.  Like they don't have any knowledge of this disorder.  Since her malformation is with the frontal lobe.  All her reasoning, thinking, planning and executing of anything in her life is impaired....Besides being depressed as well as behavioral problems. I can go on and on. I'm on the internet all the time for 3 and a half years with all loose ends.  I guess I want to know how others deal with this.  Life has never been the same.  I have 3   other children and all my focus seems to be on this one.  I'm worn out...Please offer some help....someone.....