Have any kids been treated with bisphosphonates for brittle bones?

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Hi all;

I wanted to thank all of you who contributed to the discussion on secretion control. Although Kirkland still struggles with wetness and low sat rates and 24 hr O2, at least we're dealing with it at home now and have managed to stay out of hospital without pneumonia for a couple of months now (touch wood).

I'm hoping to put another question out to you all at the request of Kirk's mito doc. In treating Kirk's osteopenia (brittle, easy-to-fracture bones), we've been offered to have him go on Pamidronate via IV treatment to try and slow the bone resorption and help with pain.

We have minimal data on the effects of pamidronate (a bisphosphonate) on mito patients. It's a relatively new drug. Our mito doc and I wanted to survey you to see if anyone's had an experience with it and if so, can you provide us with any feedback??

Thanks a bunch,

, mom to Kirkland 3.5 yrs, Complex One Def. intractable seizures, g-j tube, O2, CVI, osteopenia, respiratory issues.....__________________________________________________

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I have severe osteo and am going to be recieving a once a year IV infusion next week while at the Cleveland Clinic. It's a drug used for bone cancer called Zometa. It does nothing for the cancer, just simply drives the calcium back into the bones. It is almost ready to get approval for osteo. I think it's great because it's just 20 mins. once a year. The IV Pamidronate is similar and used quite frequently in children for osteo and osteo imperfecta. It is administered every 3 months and takes many hours. I think there are prob. pro's and con's to each but both are very affective for building the bone. Hope that helps some.