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OI CHILD

OI Centers of Excellence
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OI Children are like snowflakes-----no two are just alike.

OI Centers of Excellence

 
 
Where can I turn for expert medical care?

Osteogenesis Imperfecta is a very rare disorder. Many doctors have heard of OI, some may even treat a few patients with OI, however there are few doctors that are true experts in this field. In recent years many advances have been made in improving the quality of life of children with OI. These involve:
  • medical treatments using Bisphosphonates
  • advances in rodding surgery
  • greater understanding of the benefits of physical therapy
  • understanding how to properly cast or splint OI bones when they fracture. 

Unless a physician or orthopedic surgeon has taken a particular interest in Osteogenesis Imperfecta it is very unlikely that he or she is up to date on current treatment methods for a child with OI. Some of the new methods for treating OI children result in dramatic improvement in the childs quality of life when started very young.  It is a terrible injustice when a family has trusted a doctors care only to learn that he or she was misinformed and they have wasted precious months or years in their childs life. Most children with OI will need a local pediatrician and orthopedic surgeon who they can turn to for immediate care. Parents need to be proactive and educated about OI. They need to make sure their doctors are informed and open to working as a team with the child's parent in making healthcare decisions.

Many parents choose to travel to see one of these OI specialists to better understand the way OI affects their child and to make sure they are making the best decisions for treatment. These specialists offer OI Clinics.  A child with OI may need to see a number of doctors or specialists (pediatrician, orthopedic surgeon, dentist, audiologist, radiologist, physical therapist, occupational therapist, nutritionist, etc...) At the Clinics these doctors are brought together on a specific date and patients rotate through and see all the doctors they have need to see. The doctors, in turn, are able to discuss and work together to better serve the childs needs. The parents receive a thorough evaluation of their childs condition and suggestions to help their child reach their full potential

The following doctors and hospitals offer extremely comprehensive OI Clinics for newborns and children. These specialists have incredible knowledge in treating children with OI. They will have the most current treatment options available. Many are willing to discuss your child's concerns by phone or email.

 

Children’s Hospital of Omaha
8200 Dodge Street
Omaha, NE  68114
(402) 955-6950

Dr. Horacio Plotkin, M.D.—Pediatric Specialist
(402) 559-4056
hplotkin@unmc.edu
http://www.geocities.com/dr_plotkin/

Dr. Paul Esposito, M.D.—Orthopedic Surgeon
(402) 492-9767
pesposito@chsomaha.org
http://orthodoc.aaos.org/PaulWEsposito/

Shriners Hospital For Children –-- Montreal, Canada
1529 Cedar Ave.
Montreal, Quebec, Canada  H3G 1A6
(514) 842-4464
http://www.shrinershq.org/shc/canada/index.html

Dr. Francis H. Glorieux, M.D., Ph.D –Peds Specialist

Dr. Francois Fassier, M.D.—Orthopedic Surgeon
ffassier@shriners.mcgill.ca

Donna Fitz-Gerald (Fassier’s assistant)
dfitzgerald@shrinenet.org

Kennedy-Kreiger Institute
707 N. Broadway
Baltimore, Maryland  21205
1-888-554-2080

Dr. Jay Shapiro, M.D.—Pediatric Specialist
(410) 492-8916
(301) 693 1736
ShapiroJ@kennedykrieger.org
http://www.osteogenesisimperfecta.org/

The Johns Hopkins Hospital
In Affiliation with KKI for Orthopedic Surgery
Arabella I. Leet, M.D.-Orthopedic Surgeon
601 N. Caroline Street, Rm. 5255
Baltimore, MD  21287
http://www.hopkinsmedicine.org/orthopedicsurgery/leet.html

Paul D Sponsellar, M.D.-Orthopedic Surgeon
601 N. Caroline Street, Rm. 5212
Baltimore, MD  21287
(410) 955-3136
http://www.hopkinsmedicine.org/orthopedicsurgery/sponseller.html

Our mission is to provide caring personal support, empowering information and unwavering hope to persons caring for a child with OI.