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Posted by CATHY on August 06, 2000 at 15:33:26:

In Reply to: Re: sever gastroparesis [non-diebetic] posted by Renea on April 08, 2000 at 18:20:20:

: Hello, My name is Renea and my Daughter Jennifer is 9 years old and has recently been diagnosed as having gastroparesis.
: Jennifer started having problems about 10 months ago and every time we went to the doctor with her problems they said it was a viral infection..we made several trips to the doctor at least once or twice a month and always got the same answers, so we switched doctors and again got the same answers for several more months...finally I told the doctor we needed a referal to someone who could find out what was wrong with her since you can't have a viral infection for weeks on end for several months. The doctor finally refered us to a gastroenterologist and he ordered some test for her and diagnosed her with gastroparesis. The doctor has yet to inform us with any information on this disease and I have been searching endlessly to find out what to do for my daughter.
: Jennifer has missed so much school this year from being sick. If I send her to school she calls me to come and get her to the point that the teacher has started to refuse her the right to go to the office to call me. She is up most of the time 6 or 7 times a night hurting and feeling sick if she even sleeps and on the nights that she does sleep it is a miricle. She has been put on homebound thanks to the doctor not the school. Jennifer is on propulsid,prevacid,phenergran for nausea and Tylenol#3 for pain.
: The doctors can find a reason for the gastroparesis and are puzzled as to what to do for this disease. If anyone has any information please, I am begging you ,please email it to me.
: Thank you and God Bless,
: Renea Alexander


DEAR RENEA,
I HAVE SUFFERED FROM GASTROPARESIS FOR THE PAST TEN YEARS. I WAS MISDIAGNOSED BY 12 PHYSICIANS AS HAVING IRRITABLE BOWEL SYNDROME. MY 13TH DOCTOR FOUND THE GASTROPARESIS. I HAVE BEEN IN AND OUT OF THE HOSPITALS CONTINUOUSLY FOR THIS CONDITION. I HAD MY STOMACH REMOVED AND I STILL HAVE THE SYMPTOMS OF THE DISEASE. THE BEST PHYSICIAN SPECIALIZING IN GASTROPARESIS IS AT THE MAYO CLINIC IN ROCHESTER. HOWEVER THERE IS A WAITING LIST. THE SECOND BEST SPECIALIZING IN GASTROPARESIS IS DR SOFFER AT THE CLEVELAND (OHIO) CLINIC. I AM HOPING TO GET A REFERRAL TO SEE HIM WHEN MY LOCAL GASTERENTEROLOGY PHYSICAN RETURNS FROM VACATION. I AM SORRY FOR JENNIFER I KNOW HOW HORRIBLE SHE FEELS. THERE ARE PEOPLE THAT HAVE IDIOPATHIC GASTROPARESIS (NO KNOWN CAUSE) THIS IS NOT UNCOMMON.

RECENTLY GASTROPARESIS WAS DICUSSED ON THE PAUL HARVEY RADIO STATION. HE SAID THERE IS PROOF THAT VIGRA CAN HELP PATIENTS PLAGUED WITH GASTROPARESIS. THERE WAS ALSO A SMALL ARTICLE IN THE ST PETERSBURG, FL TIMES NEWSPAPER SAYING THE SAME THING. I AM HOPING TO GET THIS PROBLEM RESOLVED AT THE CLEVELAND CLINIC.

WHEN I HAD A STOMACH THE ONLY PAIN RELEIF I COULD GET WAS THROUGH A 25MGH DUREGESIC PATCH. HOWEVER THIS IS A NARCOTIC. I NO LONGER TAKE NARCOTICS AND TORADOL (NON=NARCOTIC) SEEMS TO HELP WOTH THE PAIN. I RECEIVE IT VIA A CENTRAL LINE IN MY CHEST. I RECEIVE TPN (TOTAL PARENTAL FEEDINGS) EVERY EVENING ADMINISTERED BY A HOME HEALTH CARE NURSE.

I HOPE THIS INFLO HELPS YOU AND YOUR DAUGHTER. I WILL KEEP YOU BOTH IN MY PRAYERS.

CATHY

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