TestifyToLove
New member
Okay, I've seen LOTS of conversations with adults stating that they have bone pain related to their CF, especially in the legs.
M has been screaming in the night for 6 months now about...leg pains. The pain travels up and down his leg, but its always there and most nights he wakes up screaming at least once. We've x-rayd it. We've tried Ibprofen. We've had it examined by a doctor repeatedly. I tried amber, which works for my other 2 with growing pains. We've tried homeopathics and placebos. We've tried increasing his sodium, potassium and chloride intake. In short, we've tried everything we can think to try and nothing is making it better.
So, after seeing the conversations on here about leg pains. And, realizing that M's vitamin D levels have been dangerously low for 18 months now, I asked the CF doctor for a bone density scan today. Its recommended annually by the CFF for all CF patients and its never been done on M. It can't hurt, and it might help.
CF doctor argued that I got bad information from adult CFers, cause the only reason they would have pain is if they are having stress fractures (and if his bone density is low, couldn't he have the same issue???), he's too young for this to be an issue (but I know we have at least 2 children on this board with this issue and M's age). He conceded that he will run the test because gee, like I said in the FIRST place, it won't HURT and he has LOTS of complications in his presentation in the first place.
I'm just struggling to figure out why the almighty doctor who does NOT have CF knows more about pain issues in CF than the patients WITH CF who have to live with this stuff.
So, do you or your child ever experience bone pain, or other debilitating pains in extremities that cannot be explained? I realize M is terrible about reporting pain. But, I've rocked this baby at 2am while he screamed in pain on more than one occassion. I think this pain is legit. And, I think its related to the CF and not mere growing pains. I have 2 with growing pains and its nothing like what M is experiencing and has for 6 months.
M has been screaming in the night for 6 months now about...leg pains. The pain travels up and down his leg, but its always there and most nights he wakes up screaming at least once. We've x-rayd it. We've tried Ibprofen. We've had it examined by a doctor repeatedly. I tried amber, which works for my other 2 with growing pains. We've tried homeopathics and placebos. We've tried increasing his sodium, potassium and chloride intake. In short, we've tried everything we can think to try and nothing is making it better.
So, after seeing the conversations on here about leg pains. And, realizing that M's vitamin D levels have been dangerously low for 18 months now, I asked the CF doctor for a bone density scan today. Its recommended annually by the CFF for all CF patients and its never been done on M. It can't hurt, and it might help.
CF doctor argued that I got bad information from adult CFers, cause the only reason they would have pain is if they are having stress fractures (and if his bone density is low, couldn't he have the same issue???), he's too young for this to be an issue (but I know we have at least 2 children on this board with this issue and M's age). He conceded that he will run the test because gee, like I said in the FIRST place, it won't HURT and he has LOTS of complications in his presentation in the first place.
I'm just struggling to figure out why the almighty doctor who does NOT have CF knows more about pain issues in CF than the patients WITH CF who have to live with this stuff.
So, do you or your child ever experience bone pain, or other debilitating pains in extremities that cannot be explained? I realize M is terrible about reporting pain. But, I've rocked this baby at 2am while he screamed in pain on more than one occassion. I think this pain is legit. And, I think its related to the CF and not mere growing pains. I have 2 with growing pains and its nothing like what M is experiencing and has for 6 months.