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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.
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. Fassier: ffassier@shriners.mcgill.ca
Donna Fitz-Gerald (Fassier’s assistant):
dfitzgerald@shrinenet.org
Children’s Hospital
of Omaha
8200 Dodge Street
Omaha, NE 68114
(402) 955-6950
Kennedy-Kreiger Institiute
707 N. Broadway
Baltimore,
Maryland 21205
1-888-554-2080
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
- Paul D Sponsellar, M.D.-Orthopedic Surgeon
601 N. Caroline Street,
Rm 5212,
Baltimore, MD 21287
410-955-3136
Shriner's Hospital that give Pamidronate
Shriner's Hospitals that use F-D rods
What makes your local DR good?
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