Well Care

Blood Tests

Serum (Blood) Chemistries

  • Sodium (Na)
  • Potassium (K)
  • Chloride (Cl)
  • Total CO2 or bicarbonate (HCO3) [test for acidosis]
  • Calcium (Ca)
  • Phosphorus (P)
  • Magnesium (Mg)
  • Alkaline phosphatase
  • Uric acid
  • Albumin, total protein
  • Creatinine, blood urea nitrogen (BUN)e
Minimum every 6 months or more often as ordered by physician

Anemia Serum

TESTS FOR PROGRESSIVE KIDNEY DISEASE WITH ANEMIA
  • CBC: hemoglobin, hematocrit
Minimum every 6 months or more often as ordered by physician
  • Serum iron, ferritin, transferrin, T-
saturation
As ordered by physician, if anemia present

Anemia Serum

TESTS FOR PROGRESSIVE KIDNEY DISEASE WITH ANEMIA SPECIAL BONE-RELATED SERUM (BLOOD) TESTS
  • Parathyroid hormone (intact)
  • Vitamin D-25 hydroxy, vitamin D-1,25 dihydroxy
Minimum yearly if bone disease present; otherwise as ordered by physician

Serum (Blood) Chemistries

  • Parathyroid hormone (intact)
  • Vitamin D-25 hydroxy, vitamin D-1,25 dihydroxy
Minimum yearly if bone disease present; otherwise as ordered by physician

Special Amino Acid Tests

(AT DIAGNOSIS ONLY)
  • Blood and random urine for amino acids
Young man with Lowe syndrome giving thumbs up

Kidney Function Urine Tests

Urinalysis

  • Protein (albumin)
  • Glucose
  • Blood
  • Leukocyte esterase, nitrite (infection)
  • pH (acidosis)
  • Specific gravity (concentration)
Minimum every 6 months or more often as ordered by physician

Random Urine Sample

  • Protein
  • Calcium (Ca)
  • Creatinine (Cr)
  • Ratios: protein/Cr, Ca/Cr
Minimum yearly or more often as ordered by physician

24 Hour Urine Collection

  • Not possible if nighttime bed wetting or not toilet trained
  • Total protein (protein electrophoresis not necessary)
  • Creatinine
As ordered by physician

General Kidney Stone Eval

NOT LOWE SYNDROME SPECIFIC
  • Calcium
  • Citrate
As ordered by physician

Diagnostic 
Imaging Tests

(X-Ray, Sonogram)

Renal Ultrasound (Sonogram)

  • Bone x-rays of wrists, knees, ankles
  • Spine x-rays for scoliosis
Under age 12 years, minimum every 1-3 years, then as ordered by physician; if kidney stones or kidney calcifications present, every 1-3 years or more often as ordered by physician

Bone Density Test

  • Wrist
  • Spine
Depending on availability, after age 12 years old minimum every 1-3 years, or more often as ordered by physician

Where Can I Go For More Information?

 

The Lowe Syndrome Association (LSA), an international non-profit organization made up of parents, friends, relatives, and professionals. The LSA provides information, fosters communication among families, and supports research. It publishes a newsletter as well as this website, and sponsors conferences.