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INFANTS W/ EDS CLASSICAL TYPE
Posted by SILVIA on 9/12/2003, 8:23 pm
64.12.96.107
HELLO I LIVE IN SOUTHERN CA. MY SON MAY BE THE ONLY CHILD WITH EDS IN
VENTURA COUNTY. HE WAS BORN AT 27 WEEKS, 2LBS 11OZ. HE WAS DIAGNOSED WITH
CLASSICAL TYPE EDS BY HIS GENETISIS DR. RANDOLF. HE SEE'S A PEDIATRIC,
PULMONOLOGIST, CARDIOLOGIST, OPTHOMOLOGIST, ORTHOPEDIC DOCTOR. HE IS ALSO
INVOLVED WITH TRI-COUNTIES REGIONAL CENTER, RAINBOW, EASTER SEAL,
DEVELOPMENTAL MILESTONES. HE HAS AN SSI CASE PENDING AND MY FORM OF
INSURANCE IS MEDICAL AND CALIFORNIA CHILDREN SERVICES. HE HAS HAD THREE
SURGERIES DONE IN THE FIRST 4 MONTHS OF HIS LIFE. THE FIRST ONE WAS A
BILETERAL INGUINAL HERNIA REPAIR, CERCUMSSION AND BIOPSY OF THE FORSKIN, AND
A RIGHT HYP REPAIR DUE TO HIS DYSPLASIA. SO FAR, I BELEAVE I'M ON THE RIGHT
TRACK, TOUCHED BASE WITH ALL THE RESOURCES I CAN FIND BUT, YET, I NEED
SOMEONE TO TALK TOO, I WANT TO GET CONNECTED WITH FAMILIES LIKE ME. SO
PLEASE HELP, AND RESPOND BACK. THAN YOU!