This brochure was written by Barb Michelson, mother of Ashley Michelson who had E coli O157:H7 and Hemolytic Uremic Syndrome at the age of 8 in September 1993. Michelson "wanted to provide information to parents that we searched for but couldn't find when our daughter was in the acute phase of illness with HUS. We hope it will be helpful to you."

A note from the author: E. coli 0157:H7. Hemolytic Uremic Syndrome. These terms sounded like a foreign language to us when our daughter first became ill. As parents who were suddenly thrust into emotional turmoil, my husband and I knew we needed to understand the language used in the world of medicine. We found no such resources available to parents so we decided to assemble this brochure. This probably will not cover every term you may need to know but hopefully it will help in some way to make things a little more understandable through this difficult and confusing time.

GLOSSARY

Anemia-a deficiency of red blood cells, the oxygen-carrying component of blood.
Anuric (oligoanuric)-(adjective) the state of producing no urine.
Anuria- (noun) no urine
BUN (blood urea nitrogen)- blood work that measures the blood's content of urea. The BUN test is used primarily to evaluate renal (kidney) function. It may also indicate liver disease or dehydration. In HUS, BUN level rises well above normal, indicating that kidneys are not filtering the blood properly.
CBC (complete blood count)- a series of tests in which the numbers of red blood cells, white blood cells and platelets in a given volume of blood are counted. CBC also measures hemoglobin content and packed cell volume (hematocrit) of red blood cells, assesses the size and shape of the red blood cells (blood smear), and determines the types and percentages of white blood cells. Components of the complete blood count (hemoglobin, hematocrit, white blood cells, platelets, etc.) can also be tested separately when a doctor wants to monitor a specific condition.
Chem 10 or 20- a battery of chemical tests (10 tests in a Chem 10 or 20 tests in a Chem 20) performed on serum (portion of blood without cells). It is usually performed with a CBC to test for electrolytes, creatinine, BUN, etc.
CNS (Central Nervous System)- The brain and spinal cord. In HUS, central nervous system involvement means that the brain has become involved.
Creatinine-(noun) waste product found in the bloodstream that is excreted in urine. In HUS, the creatinine rises well above normal, indicating kidneys are not filtering the blood properly.
E coli- a normal bacterial flora in the intestines of many animals, including humans. Normally E coli serves a useful function in the body by suppressing the growth of harmful bacterial species and by synthesizing essential vitamins. Few E coli strains cause human illness.
E coli 0157:H7- a strain of E coli rarely found in humans that, in humans, produces a toxin which ultimately causes severe damage to the lining of the intestine, blood vessels and blood cells.
Enteric- (adjective) Of, relating to, or being within the intestine.
Gastroenterology- The study of the stomach and intestine and their diseases.
Hemoturia- (noun) blood in the urine.
Hemolytic Anemia-anemia that results from destruction of red blood cells.
Hemolytic Uremic Syndrome- A disorder marked by renal failure, hemolytic anemia, platelet deficiency, coagulation defects, and variable neurologic malfunction.
Hypertension- High blood pressure.
Nephrology-The specialty of medicine dealing with the kidneys.
Platelets (thrombocytes)- the tiny blood cells that initiate blood clotting. Platelets are necessary to form clotting in a healthy person. In HUS, platelets form into tiny clots in the bloodstream, thereby dramatically reducing platelets available for normal clotting and leaving the patient susceptible to excessive internal bleeding.
Platelet microthrombi-(noun) tiny blood clots.
Proteinuria- (noun) the presence of protein in the urine; may indicate damage to or disease of kidneys.
Red Blood Cells (RBCs)- Red blood cells carry oxygen to all parts of the body. In HUS, red blood cells are shredded faster than the body can replace them, so the body struggles to get oxygen to all necessary parts.
Renal- pertaining to the kidneys.
Sequelae- (noun) consequences, symptoms
Thrombocytopenia- (noun) reduction of the number of platelets in the blood.
Thrombosis (thrombi, microthrombi)-(noun) blood clot(s).
Urea- one of the nitrogenous waste products of protein metabolism. Urea is formed in the liver as the end product of protein metabolism.
Verotoxin- (noun) a poisonous molecule that damages or attacks the blood.
VTEC (verotoxin-producing E coli)- (noun) E coli that puts poison into the bloodstream and disrupts normal function of blood. ~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
A Special Note to Parents: While your child is hospitalized with E coli and/or Hemolytic Uremic Syndrome, focus on your child and information your doctors are sharing. Ask questions, and ask them more than once if needed. The medical team will help you comprehend the things you need to know.
Take care of yourselves through this stressful time. You can give the best care to your child only if you are rested and healthy. When your child is safely through the initial hospitalization and you are settled in at home again and well-rested, you may feel ready to read more about life after Hemolytic Uremic Syndrome.
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