ARE YOU BEING HOSPITALIZED? I DON'T UNDERSTAND IF THEY HAVE NO DIAGNOSIS FOR YOU YET WHAT IS THE MEDICATION REGIMEN FOR? WHEN WE WERE FINALLY BLESSED WITH FINDING OUR DR AT SHANDS SHE GAVE US WHAT SHE PRETTY MUCH THOUGHT WE HAD BY OUR SIGNS AND SYMPTOMS AND BLOOD WORK OVER THE PHONE. SHE TOLD US TO PACK OUR BAGS FOR A HOSPITAL STAY THAT WOULD BE AT LEAST 3-5 DAYS. WHEN SHE FIRST SAW US SHE SAID I SAW YOU IN THE WAITING ROOM AND KNEW YOU WERE MY PATIENT. AND EVER SINCE MEETING HER OUR LIVES HAVE TOTALLY CHANGED. WITH PROPER DIAGNOSIS AND HAVING A DOCTOR WHO KNOWS WHAT THE DISEASE IS HAS TREATED IT BEFORE AND KNOWS THE PROPER STEPS TO HEALING IT IS LIFE SAVING. WE HAD EXTENSIVE CALCINOSIS WHEN WE WERE FINALLY DIAGNOSED AFTER MORE THAN A YEAR OF NO ONE KNOWING WHAT WAS WRONG. WE WERE HOSPITALIZED FOR 5 DAYS. AT THAT STAY WE RECEIVED IVIG, IV STEROIDS 875MG DAILY, AND METHOTREXATE IN THE IV. WE STARTED PREVACID AND PLAQUENIL AND FOLIC ACID. THEY CAN RUN THE STEROID SLOWER IF IT CAUSES BURNING OR HEADACHES. IT IT NOT A RACE TO GET IT IN. IT JUST NEEDS TO BE DONE. WE HAD LOTS OF LAB WORK AND CHEST XR AND PELVIC XR AT OUR STAY. WE HAD ANOTHER HOSPITAL STAY ONE MONTH LATER FOR 3 DAYS WE RECEIVED IV IG AND IV STEROIDS 875MG. MY DAUGHTER ALSO HAD A CONTRACTURE IN HER LEG AT DIAGNOSIS. WE WERE SENT HOME ON 50MG PREDNISONE, PLAQUENIL, FOLIC ACID, PREVACID AND SQ INJ OF METHOTREXATE WEEKLY. IT IS NOW 1 1/2 YEARS LATER WE TAKE PREDNISONE 5 MG EVERY OTHER DAY, PREVACID, FOLIC ACID, CALCIUM, AND METHOTREXATE INJ ONCE A WEEK. WE HAVE NO PALPABLE CALCINOSIS ANY MORE. NO CONTRACTURES. NO DEFICITS EXCEPT MAYBE ENDURANCE PROBLEMS. I HOPE YOU GET THE RIGHT PLACE AND DOCTOR TO HELP YOU GUYS FIGHT THIS LONG BATTLE. I WILL PRAY FOR YOU AND YOUR FAMILY, NEVER GIVE UP.
LYNN
MOM OF JORDAN AGE 9 DX 12-06
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