Treatments
Up Osteopetrosis Links Surgery Cases Definitions/Types Researchers Treatments Complications

 

The following list of links all refer to sites discussing the "treatment" of osteopetrosis.

bulletCalcitriol - the active metabolite of Vitamin D that controls absorption of calcium in the intestine - we started calcitriol on Monday, May 10, 1999.   We took 1.5 mg every six hours.  We stopped calcitriol in November, 2001 due to signs of early calcinosis of the kidneys.  We will re-evaluate this treatment as an option in the future.
bulletCalcijex (calcitriol injection) - information from Abbott Labs
bulletRocaltrol® (calcitriol) -  Complete Product Information - for US audiences only
bulletTreatment of congenital osteopetrosis with high-dose calcitriol
bulletInterferon-gamma-1b
 
bulletDifficult Pediatric Medical Dilemma Clinic
bulletOur first trip to Dr. Key's clinic was on June 7, 1999.  We returned in December, 1999, December, 2000 and our most recent trip was March, 2002.
bulletMetabolic Research Unit of the Shriner's Hospital of St. Louis - specializes in metabolic bone disease in children and operates one of the country's largest clinics involving various forms of hypophosphatasia, short limb dwarfism, chondrodysplasia, pseudohypoparathyroidism, osteopetrosis and variants of osteogenesis imperfect. Contact Michael P. Whyte, M.D. for more information.
bulletBone Marrow/Cord Blood Information (normally a treatment for severe cases of the autosomal recessive form of the disease)
bulletBone Marrow Transplant
bulletAllogeneic Hematopoietic Stem Cell Transplantation Utilizing Purified CD34+ Cells for Children Affected with Osteopetrosis – A Pilot Study

In June, 1999 - we visited Dr. L Lyndon Key from the Medical University of South Carolina. Dr. Key treats numerous patients with this bone disease and will serve as Kaleb's main "specialist." He developed a medical plan for the other physician's to follow during the case of the year.  The visit was filled with numerous tests including: hearing, vision, developmental, physical therapy, bone marrow scan, skeletal xray, MRI, catscan, and a bone and skin biopsy.  Luckily, Kaleb has been diagnosed with a "mild" case of the autosomal dominant form of the disease. Unfortunately he did encounter the eye problems which are fairly uncommon in this form of the disease.

Please feel free to write me at kalebsmom@core.com to share your personal experiences or ask questions regarding osteopetrosis.