NY14482

HI,
MY Daughter WAS Diagnosed WHEN She WAS Around 4,With Myoclonic Jerks & Photic Sensitve Epilepsy.She HAS Sence Been On Med,Depakote,Which They Up,Once A Year Or So.They Did Have HER On A Daily Med.Valproic Acid ??)
NOW She ONLY Takes The Depakote.She Has Had MR'Is/EEGS.That SHOW Seizure Activity.
MY Question IS...WHY Does Lighting/INDOOR AS Well As Outdoor (SUN) BOTHER HER SOOO BADLY??
She Gets Picked ON Daily,With The "GEAR",SHE NEEDS TO WEAR TO PUBLIC SCHOOL (SUNGLASSES & A BASEBALL CAP).
Her Dr's,Here IN NY Dont Know What They Are Doing.
I Cant Stand To See Her,Drop To Her Knees,While THE SUNLIGHT,LIGHTING,IS LIKE A MAGNET TO HER (ON CLOUDY DARK DAYS AS WELL) SHE WILL SHAKE HER HEAD UNCONTROLABLY,UNTIL Someone REMOVES HER FROM THE LIGHT.
While IN The Phase,SHE CANNOT HEAR/RESPOND TO YOU.
I JUST HATE SEEING MY KID THIS WAY & WANTED ANY ADVISE OUT THERE & IF ANYONE ELSE HAS A CHILD WITH THESE HEALTH ISSUES.
I JUST WANT MY DAUGHTER TO LIVE.... A LONG LIFE... AND I DONT SEE THAT,THE WAY SHE IS NOW.
DRS EVEN TOLD US,IF IT WAS IN THE 70.'S Still,They Would Of Diagnossed Her As Retarded. %%**$#%@#@# IS WHAT I HAD TO SAY IN RETURN !!
SHE IS SO SMART!! YES,IN SPECIAL ED,BUT STILL MY BABY...
PLEASE,ANY ADVICE,OR OTHER PARENTS WITH KIDS WITH THESE ISSUES,Email Me.
~ Thank You ~