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Posted by kristin on August 08, 2000 at 22:57:42:

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
My name is Kristin and I was diagnosed with Gastroparesis two years ago at the age of 25. My first doctor didn't believe me and I went undiagnosed for almost six months. Since that time I have tried every drug available. I strongly urge agaisnt giving the children I have read about on this site the drug Reglan. The feeling it gave me was horrible. I actually felt crazy, like I was not in control. I have a very severe case of this illness and I am happy to say I have gained some control but it is not easy. You must change your diet. There is a Gastroparesis diet on the site Jackson gastroenterology. Follow it starting at stage one to gain control and work up. You have to be very dedicated to the diet. The slightest devience will case an episode. The second step is to take a trip to Canada and get the drug Domperidone. I was lucky enough to get in a study here but that is no longer an option as it has not been appoved by the FDA. I am now able to live a semi-normal life. This disorder can be very difficult I have gone through denial deppression, a sort of anorexia(which is enevitable when you CAN'T eat) and it has changed my life. But I will get better and they will figure something out. I'm still looking for a better answer. People and these kinds of website postings will help! Kristin

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: : I would like to here from anyone who has this disorder. I have dropped 35 pounds in the last 4-5months.I only weigh 108 and am 5'6" female.I have a variety of other problems such as migraines,joint pains,allergies,severe constipation,fatigue, weakness in lower extremeties,severe pain in left flank mostly after eating or drinking,severe nausea,
: : leg muscle pain,left shoulder pain.I have had alot of test and no real diagnosis other than gastroparesis.My drug list consist of zofran,premarin,claritin,lortab elixer,imitrex,and I am alergic to the traditional drugs used for this disorder [reglan and propulsid] Eurythromiacin doesn't help either.I also have freguent upper respiratory infections and urinary tract infections.Looking for any info.Thanks
: My name is Kristin and I was diagnosed with Gastroparesis two years ago at the age of 25. My first doctor didn't believe me and I went undiagnosed for almost six months. Since that time I have tried every drug available. I strongly urge agaisnt giving the children I have read about on this site the drug Reglan. The feeling it gave me was horrible. I actually felt crazy, like I was not in control. I have a very severe case of this illness and I am happy to say I have gained some control, but it is not easy. You must change your diet. There is a Gastroparesis diet on the site Jackson gastroenterology. Follow it starting at stage one to gain control and work up. You have to be very dedicated to the diet. The slightest devience will cause an episode. The second step is to take a trip to Canada and get the drug Domperidone. I was lucky enough to get in a study here but that is no longer an option as it has not been appoved by the FDA. I am now able to live a semi-normal life. This disorder can be very difficult I have gone through denial deppression, a sort of anorexia(which is enevitable when you CAN'T eat) and it has changed my life. But I will get better and they will figure something out. I'm still looking for a better answer. People and these kinds of website postings will help! Kristin

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