Re: [diabetesinsipidus] Research for article for DIF's Endless Water
- In a message dated 8/31/00 5:04:10 PM Pacific Daylight Time, elison@...
<< m writing an article for a future issue (probably Spring 2001) of
Endless Water about how
children's medical issues impacts parents.
How did you feel when you learned of your son/daughter's diagnosis?
RELIEF--IT TOOK 4 MONTHS TO DIAGNOSE. IN THE MEANTIME MY DAUGHTER HADHAD TO
DROP OUT OF HER FRESHMAN YEAR IN COLLEGE AND MANY PEOPLE WERE ACTING LIKE IT
WAS AN EMOTIONAL PROBLEM. I FEARED THAT IT WAS SOMETHING LIKE CANCER.
How did other family members react to your news of your child's
THEY HAD A HARD TIME UNDERSTANDING IT, BUT BASICALLY ACTED LIKE SHE SHOULD
GET BACK TO HER LIFE NOW THAT SHE HAD BEEN DIAGNOSED. THEY DID NOT
UNDERSTAND THAT IT IS DIFFICULT TO GET BACK IN BALANCE
How did you feel having to tell them about the situation?
I FELT FINE--SHE WAS 18 SO IT WASN'T LIKE A BABY WHO CANNOT TAKE CARE OF
How did you feel when you learned that there was a patient support
group, like the Diabetes Insipidus Foundation?
INCREDIBLE RELIEF. THE DOCTORS KEPT TELLING US THAT IF SHE WOULD JUST TAKE
THE DOSAGE OF DDAVP THAT THEY RECOMMENDED, SHE WOULD BE FINE, YET EVERY TIME
SHE TOOK THAT AMOUNT, SHE BECAME WATER INTOXICATED. THE DOCTORS BASICALLY
SAID SHE WAS NONCOMPLIANT AND DID NOT WANT TO GET WELL. THROUGH THE SUPPORT
GROUP, I PUT THESE PIECES OF INFORMATION TOGETHER AND WAS ABLE TO CONFRONT
THE DOCTORS WITH EVIDENCE THAT THEY NEEDED TO CHECK HER SODIUM LEVELS.
ALTHOUGH THIS ANNOYED THEM (THEY HATE TO HEAR THAT YOU HAVE BEEN ON THE
INTERNET), WHEN THEY CHECKED, HER SODIUM WAS AT LEVELS AT WHICH MANY GO INTO
CONVULSIONS. I SWITCHED DOCTORS.
Why is talking with other parents so important to you (how does it
WHEN WE EVENTUALLY SAW DR VERBALIS, HE TOLD US IS THAT NO TWO CASES ARE
ALIKE. TALKING TO OTHERS ENABLED ME TO REALIZE THIS AND REMOVE MY DAUGHTER
FROM A DESTRUCTIVE DOCTOR-PATIENT RELATIONSHIP
MY ONLY REGRET IS THAT PEOPLE WITHOUT RESOURCES DO NOT KNOW ENOUGH TO LOOK ON
THE INTERNET OR QUESTION DOCTORS--I HATE TO THINK OF HOW MANY HAVE BEEN
IMPROPERLY MEDICATED BECAUSE OF THIS LITTLE KNOWN DISEASE. WE WRE TOLD THAT
MY DAUGHTER COULD HAVE DIED FROM WATER INTOXICATION.
May I use your answers in the article?
Thanks for your help!