Osteoporosis treatment

[jshet]

Hi everyone. My son is 17 and was just diagnosed with severe osteoporosis. I spoke with the cf clinic today and they have been speaking with his endocrinologist and nephrologist deciding the best way to proceed.
my understanding is he will go back to see his endocrinologist and the plan will be to begin IV meds for treatment each month. The medication will be Pamidronate (spelling).

i was wondering if anyone here is receiving this treatment and what are some of the side effects you have.

I understand that blood work will have to be done each month prior to treatment and an IV placed each month also. Not to mention all of the other blood draws that he can have for other reasons. My son also has autism and has a hard time with blood draws and IV's, he can get physically sick, panic attacks, and has fainted. His veins are also small and can have to be stuck more than once. His blood will stop flowing at times and they will have to start over.

i was wondering if I should bring up the possibility of a port since treatment will be monthly for about 2 years. I was hoping to get some opinions from you guys. I don't know a lot about ports and would appreciate any advice. One big question is does the numbing cream really work so he would not feel any pokes? This is very important to know before even considering this. Thank you everyone, us hetus het

 

[PepperKitty]

I've had Pamidronate once. The side effects were extreme! I developed a high fever, with violent heaving for days. I also had dizziness, severe nausea, edema, joint & muscle pain that lasted for weeks. Needless to say I could not take it again. I've had less side effects with oral osteoporosis meds, but they still cause me edema & joint pain. My CF Clinic doesn't use Pamidronate much anymore. Incidents of side effects were too great.

I worry about breaking a bone. I'm a klutz & My bone loss is pretty severe.

Ports are wonderful! I recommend them highly, especially as often as he will use it. Numbing cream works great for the needle poke, but getting accessed doesn't hurt much unless the port's missed.

 

[jshet]

Thank you Pepper Kitty. Gosh those side effects are frightening. I hope we bypass all of that. Because of his severe GI issues, he is not a candidate for oral meds though.

His osteoporosis is severe. We were told they do not usually diagnosis this in children, they say low bone density. But because of his very poor z scores they diagnosed severe osteoporosis.

So getting accessed with numbing cream is much better(pain wise) than having an IV placed or getting blood work? I hope so.

Thanks is again for the great info.