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OI CHILD

Treatment in OI
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OI Children are like snowflakes-----no two are just alike.

Remarkable developments have been made in the last 10 years that have dramatically changed the quality of life for many children with Osteogenesis Imperfecta.  Doctors at Shriners Hospital for Children in Montreal developed a medical  treatment using a drug called Pamidronate.  Pamidronate is a bisphosphonate and acts to slow down the breakdown of bone while allowing the bone to make new bone.  It is a treatment , not a cure, but it the best thing available to these kids in the history of OI.  It is not for all children with OI but a good OI specialist can determine who should be on it and carefully observe the treatment process to try to prevent adverse effects.
 
Almost universally, studies and publications on children with Types III-IV OI show  an increase in bone volume, increase in bone density, decreased perception of pain, increased vertebral height, and a decrease in fracture rates.  Children treated with Pamidronate for four years show at least as much growth as those without pamidronate, and in most cases the growth is improved.  Pamidronate has been shown to increase the level of mobility in moderate to severe OI most probably by alleviating the chronic bone pain that these children live with daily.

How is the treatment administered?
 
Pamidronate treatments are given by intravenous infusion. This infusion typically runs 3-4 hours a day for 1 to 3 days depending on the center giving the medicine. This treatment is given roughly every 8 weeks for the first 2 years and then the time interval increases as the child gets older and bone turnover slows down.  Some children remain inpatient for the entire infusion while other have their IV capped and  go home at the end of each day  Some lucky children even have their  treatments administered at home through a Home Health Care agency.
 
Some doctors opt to give the full Montreal dose(9mg/kg/yr) while others give the Omaha dose(4.5mg/kg/yr).  There is no tried and true dosage and the least effective dose should be amount all are trying to use.   The hope is that the medication is given by those knowledgable about the medications and it's potential side effects.   A DEXA scan  (bone density scan) is a useful tool to monitor the effectiveness and possible overeffectiveness of this treatment.

At What Age Can Treatment Begin?
 
Pamidronate treatments can begin at any age. For children  with moderate to severe OI it has been shown that the sooner the treatment is started the more impressive the results are. There are doctors willing to put children on it at birth or shortly thereafter with excellent results.    

Cyclic Administration of Pamidronate in Children with Severe Osteogenesis Imperfecta

Link to Zolendronate clinical trial info:

New Hope For Children With Osteogenesis Imperfecta

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