I am the mom to 2 children with OI. My daughter was born moderate-severe and had biopsy confirmed OI at 4 months Type III/IV. She has been on Pamidronate since dx at 4 month and her bone density has gone from -3 to 0 (normal) in 12 months of Full dose and she has been on 1/2 dose(omaha) since 16 months of age. She now is almost 5 years old and presents mild. She run , jumps and has not had a long bone fracture since she was 9 months of age. She has F-D rods in her femurs since 19 months and other than that has had no other rodding surgeries.
Her brother is almost 5 and he was adopted at 2.75 years. Started PAM at 2.5 years and he has had a great response as well. He was Dx as Type II at birth in Bulgaria but probably is more a Type IV (his collagen test was neg). He has gone from fracturing 10 times a year to 1-2 times per year. He has rods in all 4 leg bones(F-D telescoping rods) and walks independently indoors and uses a posterior walker for outside and distances. Pamidronate has changed his life and mobility.
How many of you are on Pamidronate or Zolendronate?
How many of you know why F-D rods are the best for OI kids?
Let’s start a discussion.
Mary