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Abigial's Experience with Pamidronate |
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We read so much information on OI when Abigail was first born. We were very interested in learning more about Pamidronate, a new drug that seemed to be dramatically improving the quality of life for infants and children with OI. We thought it sounded very interesting and were excited that there was some hope for Abigail. We learned at the time Pamidronate was being offered at Parklands and Nkosi Albert Latuli Hospitals in Durban . When Abigail was about 3 months old I contacted Dr. Jaapie Roos a pediatrician in Durban who had done research on Pamidronate and he said Abigail would be a great candidate. Her first treatment was scheduled for when she was 5 months old. We live in Pietermaritzburg and we travel 45min every eight weeks.
So far Abigail has only had three treatments but has only had two fractures since her birth. We have had bone density scans which have shown us that she is very Osteo penic and they are not able to get a reading as yet. Babies BMD are not very high to begin with at such a young age, plus there is not that much data on BMD in infants that young, so we didn't really learn anything from this first bone scan. Hopefully after a year we will have some success. After the first treatment we did notice that she was in less pain and slept more soundly. We are in the process of establishing a second Bone Density Scan in June after her third treatment. We are not sure at this time if the sofeware that was used is able to be used on babies. But we still push for some kind of result. |
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