LINKS

RESOURCES
(printable)
  • Medication Log - Download this page to track your medications and dosages
  • Morning Report - prepared by Dr. Jennifer Bergquist, University of Chicago Comer Children’s Center Hospital (posted with permission)
  • HSP Factsheet (for schools and organizations) - Print this page to give to teachers, school nurses, childcare providers, coaches, churches or even friends and family

GLOSSARY (pull-down menu)

Doctors and nurses sometimes use their own professional medical language, consisting of specific medical terms which are often derived from Latin. If you are an HSP patient (or the parent of one), and already feeling overwhelmed by what you're confronting, this can be very confusing! For the rest of us who do not have a medical background, hearing these terms (In addition to being hard to pronounce!) can feel not just confusing, but very frustrating if you don't understand what they describe.

What follows is a plain-English explanation of many of these not-so-basic terms you might not be familiar with (as well as a few you probably are), that may be used by medical professionals to describe the HSP you or a loved one is dealing with. This list also contains definitions of some of the roles of the advanced specialists such as nephrologists and gastroenterologists whom your HSP patient may need treatment from (doctor definitions are at the end, starting with General Pediatrics):

Intussusception

Pronounced "in-tuh-suh-sep-shun," intussusception is the slipping of a length of intestine into an adjacent portion (like a sleeve doubled back on itself) usually producing obstruction.

Glomeruli (glom-er-yuh-lie)

Small convoluted or intertwined masses (as of organisms, nerve fibers, or capillaries): as a : tufts of capillaries that are covered by epithelium, are situated at the point of origin of each vertebrate nephron, and normally pass a protein-free filtrate from the blood to the surrounding Bowman's capsule.

Protein-to-creatinine ratio

Protein-to-creatinine ratio is often shortened to "P/C Ratio."

Men excrete 20-25mg of creatinine per kilogram body weight per day, and women excrete 15-20mg of creatinine per kilogram body weight per day. The creatinine excretion is fairly constant throughout the day regardless of changes in urine flow rate. Normal protein excretion is less than 100-150mg every 24hours. A normal protein-to-creatinine ration is therefore less than 0.1 (100-150mg protein/1000-1500mg creatinine).

Recent studies have shown that the protein-to creatinine ratio in a random sample (in mg/mg) is roughly equal to 24-hour urine protein excretion in grams/day.

For example, if a man has urine protein =
90 mg/dl, and a urine creatinine = 30mg/dl, his protein/creatinine ratio = 3 (90/30). He therefore has roughly 3gm protein excretion in a 24 hour period.

This is extremely useful in the clinical setting. It provides enough information to classify the degree of proteinuria and determine if heavy (nephrotic range) proteinuria is present.

A ratio of less than 0.1 is normal (protein and creatinine are in mg/dl). In general, a protein to creatinine ratio greater than 2.5 suggests the presence of nephrotic range proteinuria. Therefore the urine protein-to creatinine ratio is used to estimate the degree of proteinuria.

Proteinuria

The presence of excess protein in the urine.

Hematuria

The presence of blood or blood cells in the urine.

Testicular Torsion

Testicular torsion occurs when a testicle rotates on the spermatic cord, which provides blood flow to the testicle. This rotation cuts off the flow of blood and causes sudden, often severe pain and swelling. Testicular torsion is most common in males under 25, but it can occur at any age, including in newborns and infants.

Testicular torsion requires emergency treatment. If it's treated within a few hours, the testicle can usually be saved. But waiting longer can cause permanent damage and may affect the ability to father children. When blood flow has been cut off for more than 12 hours, a testicle may become so badly damaged it has to be removed.

IgA

A class of immunoglobulins that include antibodies found in external bodily secretions (as saliva, tears, and sweat). Per Johns Hopkins' vasculitis center, "the microscopic hallmark of HSP is the deposition of IgA…in the walls of involved blood vessels." If you receive a diagnosis or suspicion of HSP, but your doctors aren't certain, have them perform DIF (Direct Immunoflourescence) to check for presence of IgA. Otherwise, HSP may be misdiagnosed as another form of vasculitis – most commonly hypersensitivity vasculitis.

Protein

Any of numerous naturally occurring extremely complex substances (as an enzyme or antibody) that consist of amino acid residues joined by peptide bonds, contain the elements carbon, hydrogen, nitrogen, oxygen, usually sulfur, and occasionally other elements (as phosphorus or iron), that are essential constituents of all living cells, that are synthesized from raw materials by plants but assimilated as separate amino acids by animals, that are both acidic and basic and usually colloidal in nature although many have been crystallized, and that are hydrolyzable by acids, alkalies, proteolytic enzymes, and putrefactive bacteria to polypeptides, to simpler peptides, and ultimately to alpha-amino acids.

In HSP, the presence of protein in the patient's urine indicates the kidneys are being affected by HSP, which can (but does not always) lead to Nephrotic Syndrome or Nephritic Syndrome or even long term or permanent kidney impairment.

Creatinine

A white crystalline strongly basic compound C4H7N3O formed from creatine and found especially in muscle, blood, and urine. Useful in determining the ratio of protein to creatinine in a patient, which can determine presence (and amount of) proteinuria.

Albumin

Any of numerous simple heat-coagulable water-soluble proteins that occur in blood plasma or serum, muscle, the whites of eggs, milk, and other animal substances and in many plant tissues and fluid.

Corticosteroids

Any of various adrenal-cortex steroids (as corticosterone, cortisone, and aldosterone) that are divided on the basis of their major biological activity into glucocorticoids and mineralocorticoids. (different from anabolic steroids).

Blood Pressure

Pressure exerted by the blood upon the walls of the blood vessels and especially arteries, usually measured on the radial artery by means of a sphygmomanometer, and expressed in millimeters of mercury either as a fraction having as numerator the maximum pressure that follows systole of the left ventricle of the heart and as denominator the minimum pressure that accompanies cardiac diastole or as a whole number representing the first value only

Biopsy

The removal and examination of tissue, cells, or fluids from the living body.

Nephrotic Syndrome

An abnormal condition that is marked by deficiency of albumin in the blood and its excretion in the urine due to altered permeability of the glomerular basement membranes (as by a toxic chemical agent).

Nephritic Syndrome (not an accidental repeat of above)

Glomerulonephritis (nephritic syndrome) is a disorder of glomeruli (clusters of microscopic blood vessels in the kidneys with small pores through which blood is filtered). It is characterized by body tissue swelling (edema), high blood pressure, and the presence of red blood cells in the urine.

  • Glomerulonephritis can be caused by various disorders, such as infections, an inherited genetic disorder, or autoimmune disorders.
  • People may have tissue swelling, headaches, visual disturbances, and seizures.
  • Diagnosis is based on tests of blood and urine and sometimes imaging tests, a biopsy of the kidneys, or both.
  • People need to restrict salt and protein intake and take diuretics or antibiotics until kidney function improves.

Glomerulonephritis can develop over a short time period (acute glomerulonephritis) or develop and progress slowly (chronic glomerulonephritis). In 1% of children and 10% of adults who have acute glomerulonephritis, it evolves into rapidly progressive glomerulonephritis, in which most of the glomeruli are destroyed, resulting in kidney failure.

Crescents, AKA Glomerulonephritis

Commonly known by the informal name "crescents" (because that's what they look like), Rapidly Progressive Glomerulonephritis (the full name) is a form of kidney disease that causes damage to the small structures (glomeruli) inside the kidneys that help filter waste and fluids from blood to form urine. The disease leads to a rapid loss of kidney function.

General Pediatrics

Whether a private physician, or at a hospital, you will probably get to know your general pediatrician very well as you travel this path. They are often the “quarterback” for the team that is overseeing the care of your HSP patient.

Nephrologists

If your child has kidney or urinary tract disease, bladder problems, or high blood pressure, a pediatric nephrologist has the special skills and experience to treat your child. Pediatric nephrologists treat children from infancy through late adolescence. Most HSP patients have regular urine tests to monitor the level of protein and blood in their urine.

Gastrointestinal (GI) specialists

Also known as gastroenterologists, they are specialists in the digestive system, including the 25-foot-long tube that processes food and nutrients, plus the liver, pancreas and gallbladder. These organs break down and absorb the food we eat so that the nutrients can be transported into the blood stream and delivered to cells throughout the body. Your GI specialist will be monitoring the patient for belly pain and especially for signs of intussusception (see above), severe inflammation or bleeding in the gut

Rheumatologists

Internists or pediatricians who are qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Many rheumatologists conduct research to determine the cause and better treatments for these disabling diseases.

Hematologists

Blood specialists: usually working in partnership with cancer doctors (oncologists), they focus on issues relating to blood and can help monitor red and white blood cell count, protein in the blood and production of new cells from the bone marrow.

Ophthalmologists

Physicians who specialize in the medical and surgical care of the eyes and visual system and in the prevention of eye disease and injury. In the case of HSP, you may need the services of an ophthalmologist if your HSP patient develops cataracts, which can be a side-effect of steroid use.