Bone pain

[TestifyToLove]

His vitamin D dropped to dangerously low levels 18 months ago, along with all his other fat soluble vitamins. We're having the levels drawn when we get back from camping next week. But, last check indicates the levels have barely budged since they suddenly dropped.

His last center did nothing but switch him to inividual concoctions of motor oil and not care. We've had him for 16 months now, and vitamin levels were low on the priority of things to fix until recently. There were a LOT of things we had to address that was entirely ignored until we got him.

I think you are making assumptions about our overall relationship with his CF doctor based upon one issue. His CF doctor is excellent and fiercely aggressive for his patients. But, he is a pulmo and clearly doesn't feel comfortable managing M's myraid of other complications. He prefers to send M to non-CF specialists outside the CF clinic for his other issues, which he does NOT do with his other patients, because he doesn't want to miss anything with M.

I just don't agree that its merely growing pains M is experiencing. I have 2 others with growing pains and this is entirely different. And, with everything else with M, I'm not entirely sure this is not behavioral versus real pain. But, we've exhausted every other option and its been nearly every night for 6 months with him waking up screaming almost nightly of those 6 months. Doctor thinks is growing pains but AGREES that the bone density scan is a good idea in this case.

 

[TestifyToLove]

His vitamin D dropped to dangerously low levels 18 months ago, along with all his other fat soluble vitamins. We're having the levels drawn when we get back from camping next week. But, last check indicates the levels have barely budged since they suddenly dropped.

His last center did nothing but switch him to inividual concoctions of motor oil and not care. We've had him for 16 months now, and vitamin levels were low on the priority of things to fix until recently. There were a LOT of things we had to address that was entirely ignored until we got him.

I think you are making assumptions about our overall relationship with his CF doctor based upon one issue. His CF doctor is excellent and fiercely aggressive for his patients. But, he is a pulmo and clearly doesn't feel comfortable managing M's myraid of other complications. He prefers to send M to non-CF specialists outside the CF clinic for his other issues, which he does NOT do with his other patients, because he doesn't want to miss anything with M.

I just don't agree that its merely growing pains M is experiencing. I have 2 others with growing pains and this is entirely different. And, with everything else with M, I'm not entirely sure this is not behavioral versus real pain. But, we've exhausted every other option and its been nearly every night for 6 months with him waking up screaming almost nightly of those 6 months. Doctor thinks is growing pains but AGREES that the bone density scan is a good idea in this case.

 

[TestifyToLove]

His vitamin D dropped to dangerously low levels 18 months ago, along with all his other fat soluble vitamins. We're having the levels drawn when we get back from camping next week. But, last check indicates the levels have barely budged since they suddenly dropped.

His last center did nothing but switch him to inividual concoctions of motor oil and not care. We've had him for 16 months now, and vitamin levels were low on the priority of things to fix until recently. There were a LOT of things we had to address that was entirely ignored until we got him.

I think you are making assumptions about our overall relationship with his CF doctor based upon one issue. His CF doctor is excellent and fiercely aggressive for his patients. But, he is a pulmo and clearly doesn't feel comfortable managing M's myraid of other complications. He prefers to send M to non-CF specialists outside the CF clinic for his other issues, which he does NOT do with his other patients, because he doesn't want to miss anything with M.

I just don't agree that its merely growing pains M is experiencing. I have 2 others with growing pains and this is entirely different. And, with everything else with M, I'm not entirely sure this is not behavioral versus real pain. But, we've exhausted every other option and its been nearly every night for 6 months with him waking up screaming almost nightly of those 6 months. Doctor thinks is growing pains but AGREES that the bone density scan is a good idea in this case.

 

[TestifyToLove]

His vitamin D dropped to dangerously low levels 18 months ago, along with all his other fat soluble vitamins. We're having the levels drawn when we get back from camping next week. But, last check indicates the levels have barely budged since they suddenly dropped.

His last center did nothing but switch him to inividual concoctions of motor oil and not care. We've had him for 16 months now, and vitamin levels were low on the priority of things to fix until recently. There were a LOT of things we had to address that was entirely ignored until we got him.

I think you are making assumptions about our overall relationship with his CF doctor based upon one issue. His CF doctor is excellent and fiercely aggressive for his patients. But, he is a pulmo and clearly doesn't feel comfortable managing M's myraid of other complications. He prefers to send M to non-CF specialists outside the CF clinic for his other issues, which he does NOT do with his other patients, because he doesn't want to miss anything with M.

I just don't agree that its merely growing pains M is experiencing. I have 2 others with growing pains and this is entirely different. And, with everything else with M, I'm not entirely sure this is not behavioral versus real pain. But, we've exhausted every other option and its been nearly every night for 6 months with him waking up screaming almost nightly of those 6 months. Doctor thinks is growing pains but AGREES that the bone density scan is a good idea in this case.

 

[TestifyToLove]

His vitamin D dropped to dangerously low levels 18 months ago, along with all his other fat soluble vitamins. We're having the levels drawn when we get back from camping next week. But, last check indicates the levels have barely budged since they suddenly dropped.
<br />
<br />His last center did nothing but switch him to inividual concoctions of motor oil and not care. We've had him for 16 months now, and vitamin levels were low on the priority of things to fix until recently. There were a LOT of things we had to address that was entirely ignored until we got him.
<br />
<br />I think you are making assumptions about our overall relationship with his CF doctor based upon one issue. His CF doctor is excellent and fiercely aggressive for his patients. But, he is a pulmo and clearly doesn't feel comfortable managing M's myraid of other complications. He prefers to send M to non-CF specialists outside the CF clinic for his other issues, which he does NOT do with his other patients, because he doesn't want to miss anything with M.
<br />
<br />I just don't agree that its merely growing pains M is experiencing. I have 2 others with growing pains and this is entirely different. And, with everything else with M, I'm not entirely sure this is not behavioral versus real pain. But, we've exhausted every other option and its been nearly every night for 6 months with him waking up screaming almost nightly of those 6 months. Doctor thinks is growing pains but AGREES that the bone density scan is a good idea in this case.

 

[Buckeye]

I don't think a bone density scan is out of the question at all. He obviously has something going on with his legs, so you might as well rule osteoporsis out if you can.Does your son take steroids - because that is an increased factor in osteoporosis. And of course the lack of vitamin D. There's also something called osteogenesis imperfecta that causes osteoporosis in children. That's a gentic thing I thought I'd throw out there because I've met a few kids with it since my son was diagnosed with osteoporosis.My son and yours are similar in that they have numerous other health issues. We actually only see the CF clinic for CF issues only. All other things that may or may not be remotely related to CF we see the specialists for - for example we see the GI specialist for all GI trouble even though they have a GI doc associated with the clinic - the one we see is better with kids with mulitple issues. I actually prefer it that way because my son seems to be more complex than the other kids they see in the CF clinic and I think the doctors aren't used to dealing with people with his handicaps.Anyhow, they don't know if my son's osteoporosis is due to CF, his seizure med which can have that as a side effect (not normally in children though and even in adults it's a very small percentage) or his limited use of his legs (which can cause your body to forget what it's supposed to use calcium for). Most likely a combination of all three things. He gets quarterly IVs of Zoledronic Acid to combat the Osteo, plus extra vitamin D.Hope they figure out the problem though because it can't be fun for either of you to deal with the nightly pain.

 

[Buckeye]

I don't think a bone density scan is out of the question at all. He obviously has something going on with his legs, so you might as well rule osteoporsis out if you can.Does your son take steroids - because that is an increased factor in osteoporosis. And of course the lack of vitamin D. There's also something called osteogenesis imperfecta that causes osteoporosis in children. That's a gentic thing I thought I'd throw out there because I've met a few kids with it since my son was diagnosed with osteoporosis.My son and yours are similar in that they have numerous other health issues. We actually only see the CF clinic for CF issues only. All other things that may or may not be remotely related to CF we see the specialists for - for example we see the GI specialist for all GI trouble even though they have a GI doc associated with the clinic - the one we see is better with kids with mulitple issues. I actually prefer it that way because my son seems to be more complex than the other kids they see in the CF clinic and I think the doctors aren't used to dealing with people with his handicaps.Anyhow, they don't know if my son's osteoporosis is due to CF, his seizure med which can have that as a side effect (not normally in children though and even in adults it's a very small percentage) or his limited use of his legs (which can cause your body to forget what it's supposed to use calcium for). Most likely a combination of all three things. He gets quarterly IVs of Zoledronic Acid to combat the Osteo, plus extra vitamin D.Hope they figure out the problem though because it can't be fun for either of you to deal with the nightly pain.

 

[Buckeye]

I don't think a bone density scan is out of the question at all. He obviously has something going on with his legs, so you might as well rule osteoporsis out if you can.Does your son take steroids - because that is an increased factor in osteoporosis. And of course the lack of vitamin D. There's also something called osteogenesis imperfecta that causes osteoporosis in children. That's a gentic thing I thought I'd throw out there because I've met a few kids with it since my son was diagnosed with osteoporosis.My son and yours are similar in that they have numerous other health issues. We actually only see the CF clinic for CF issues only. All other things that may or may not be remotely related to CF we see the specialists for - for example we see the GI specialist for all GI trouble even though they have a GI doc associated with the clinic - the one we see is better with kids with mulitple issues. I actually prefer it that way because my son seems to be more complex than the other kids they see in the CF clinic and I think the doctors aren't used to dealing with people with his handicaps.Anyhow, they don't know if my son's osteoporosis is due to CF, his seizure med which can have that as a side effect (not normally in children though and even in adults it's a very small percentage) or his limited use of his legs (which can cause your body to forget what it's supposed to use calcium for). Most likely a combination of all three things. He gets quarterly IVs of Zoledronic Acid to combat the Osteo, plus extra vitamin D.Hope they figure out the problem though because it can't be fun for either of you to deal with the nightly pain.

 

[Buckeye]

I don't think a bone density scan is out of the question at all. He obviously has something going on with his legs, so you might as well rule osteoporsis out if you can.Does your son take steroids - because that is an increased factor in osteoporosis. And of course the lack of vitamin D. There's also something called osteogenesis imperfecta that causes osteoporosis in children. That's a gentic thing I thought I'd throw out there because I've met a few kids with it since my son was diagnosed with osteoporosis.My son and yours are similar in that they have numerous other health issues. We actually only see the CF clinic for CF issues only. All other things that may or may not be remotely related to CF we see the specialists for - for example we see the GI specialist for all GI trouble even though they have a GI doc associated with the clinic - the one we see is better with kids with mulitple issues. I actually prefer it that way because my son seems to be more complex than the other kids they see in the CF clinic and I think the doctors aren't used to dealing with people with his handicaps.Anyhow, they don't know if my son's osteoporosis is due to CF, his seizure med which can have that as a side effect (not normally in children though and even in adults it's a very small percentage) or his limited use of his legs (which can cause your body to forget what it's supposed to use calcium for). Most likely a combination of all three things. He gets quarterly IVs of Zoledronic Acid to combat the Osteo, plus extra vitamin D.Hope they figure out the problem though because it can't be fun for either of you to deal with the nightly pain.

 

[Buckeye]

I don't think a bone density scan is out of the question at all. He obviously has something going on with his legs, so you might as well rule osteoporsis out if you can.<p>Does your son take steroids - because that is an increased factor in osteoporosis. And of course the lack of vitamin D. There's also something called osteogenesis imperfecta that causes osteoporosis in children. That's a gentic thing I thought I'd throw out there because I've met a few kids with it since my son was diagnosed with osteoporosis.<p>My son and yours are similar in that they have numerous other health issues. We actually only see the CF clinic for CF issues only. All other things that may or may not be remotely related to CF we see the specialists for - for example we see the GI specialist for all GI trouble even though they have a GI doc associated with the clinic - the one we see is better with kids with mulitple issues. I actually prefer it that way because my son seems to be more complex than the other kids they see in the CF clinic and I think the doctors aren't used to dealing with people with his handicaps.<p>Anyhow, they don't know if my son's osteoporosis is due to CF, his seizure med which can have that as a side effect (not normally in children though and even in adults it's a very small percentage) or his limited use of his legs (which can cause your body to forget what it's supposed to use calcium for). Most likely a combination of all three things. He gets quarterly IVs of Zoledronic Acid to combat the Osteo, plus extra vitamin D.<p>Hope they figure out the problem though because it can't be fun for either of you to deal with the nightly pain.

 

[TestifyToLove]

Yup, is on inhaled steriods. He was on high, high steriod meds until we got him home. We've got him to a minimum of them now. But, he still needs them for breathing issues.

 

[TestifyToLove]

Yup, is on inhaled steriods. He was on high, high steriod meds until we got him home. We've got him to a minimum of them now. But, he still needs them for breathing issues.

 

[TestifyToLove]

Yup, is on inhaled steriods. He was on high, high steriod meds until we got him home. We've got him to a minimum of them now. But, he still needs them for breathing issues.

 

[TestifyToLove]

Yup, is on inhaled steriods. He was on high, high steriod meds until we got him home. We've got him to a minimum of them now. But, he still needs them for breathing issues.

 

[TestifyToLove]

Yup, is on inhaled steriods. He was on high, high steriod meds until we got him home. We've got him to a minimum of them now. But, he still needs them for breathing issues.

 

[MicheleGazelle]

I wonder if his problems are in part related to getting him to a lower dose of steroids. I am wondering that because I am having bad drug withdrawal symptoms this weekend (including periodically screeching about my foot/leg discomfort) and it is reminding me of other really bad withdrawal I've been through. Getting off steroids is the worst withdrawal I have been through. I made two failed attempts, one of which landed me in the ER and one of which would have landed me in the ER except I had a regularly scheduled appointment with my CF doctor and I told him I could tell I was about to be really sick so he gave me some good drugs to keep me out of the ER. I wasn't able to successfully get off steroids until two different friends gave me the information I needed. One suggested I ask my doctor for guaifenisen to support my lungs so I could get off the steroids and the other told me I needed to taper off steroids. I did both those things and did eventually get off steroids. I was a paranoid mess and limp dish rag for 3 or 4 months (and I had not been on a very high dose of steroids to begin with -- they give me such bad side effects, I was taking a lower dose than what my doctor prescribed). I ended up with really super bad anemia and didn't stop being a limp dishrag until I treated that. It reminds me of your comments that your son has dangerously low vitamin D levels. I am wondering if that is related to getting him to a lower dose of steroids.

 

[MicheleGazelle]

I wonder if his problems are in part related to getting him to a lower dose of steroids. I am wondering that because I am having bad drug withdrawal symptoms this weekend (including periodically screeching about my foot/leg discomfort) and it is reminding me of other really bad withdrawal I've been through. Getting off steroids is the worst withdrawal I have been through. I made two failed attempts, one of which landed me in the ER and one of which would have landed me in the ER except I had a regularly scheduled appointment with my CF doctor and I told him I could tell I was about to be really sick so he gave me some good drugs to keep me out of the ER. I wasn't able to successfully get off steroids until two different friends gave me the information I needed. One suggested I ask my doctor for guaifenisen to support my lungs so I could get off the steroids and the other told me I needed to taper off steroids. I did both those things and did eventually get off steroids. I was a paranoid mess and limp dish rag for 3 or 4 months (and I had not been on a very high dose of steroids to begin with -- they give me such bad side effects, I was taking a lower dose than what my doctor prescribed). I ended up with really super bad anemia and didn't stop being a limp dishrag until I treated that. It reminds me of your comments that your son has dangerously low vitamin D levels. I am wondering if that is related to getting him to a lower dose of steroids.

 

[MicheleGazelle]

I wonder if his problems are in part related to getting him to a lower dose of steroids. I am wondering that because I am having bad drug withdrawal symptoms this weekend (including periodically screeching about my foot/leg discomfort) and it is reminding me of other really bad withdrawal I've been through. Getting off steroids is the worst withdrawal I have been through. I made two failed attempts, one of which landed me in the ER and one of which would have landed me in the ER except I had a regularly scheduled appointment with my CF doctor and I told him I could tell I was about to be really sick so he gave me some good drugs to keep me out of the ER. I wasn't able to successfully get off steroids until two different friends gave me the information I needed. One suggested I ask my doctor for guaifenisen to support my lungs so I could get off the steroids and the other told me I needed to taper off steroids. I did both those things and did eventually get off steroids. I was a paranoid mess and limp dish rag for 3 or 4 months (and I had not been on a very high dose of steroids to begin with -- they give me such bad side effects, I was taking a lower dose than what my doctor prescribed). I ended up with really super bad anemia and didn't stop being a limp dishrag until I treated that. It reminds me of your comments that your son has dangerously low vitamin D levels. I am wondering if that is related to getting him to a lower dose of steroids.

 

[MicheleGazelle]

I wonder if his problems are in part related to getting him to a lower dose of steroids. I am wondering that because I am having bad drug withdrawal symptoms this weekend (including periodically screeching about my foot/leg discomfort) and it is reminding me of other really bad withdrawal I've been through. Getting off steroids is the worst withdrawal I have been through. I made two failed attempts, one of which landed me in the ER and one of which would have landed me in the ER except I had a regularly scheduled appointment with my CF doctor and I told him I could tell I was about to be really sick so he gave me some good drugs to keep me out of the ER. I wasn't able to successfully get off steroids until two different friends gave me the information I needed. One suggested I ask my doctor for guaifenisen to support my lungs so I could get off the steroids and the other told me I needed to taper off steroids. I did both those things and did eventually get off steroids. I was a paranoid mess and limp dish rag for 3 or 4 months (and I had not been on a very high dose of steroids to begin with -- they give me such bad side effects, I was taking a lower dose than what my doctor prescribed). I ended up with really super bad anemia and didn't stop being a limp dishrag until I treated that. It reminds me of your comments that your son has dangerously low vitamin D levels. I am wondering if that is related to getting him to a lower dose of steroids.

 

[MicheleGazelle]

I wonder if his problems are in part related to getting him to a lower dose of steroids. I am wondering that because I am having bad drug withdrawal symptoms this weekend (including periodically screeching about my foot/leg discomfort) and it is reminding me of other really bad withdrawal I've been through. Getting off steroids is the worst withdrawal I have been through. I made two failed attempts, one of which landed me in the ER and one of which would have landed me in the ER except I had a regularly scheduled appointment with my CF doctor and I told him I could tell I was about to be really sick so he gave me some good drugs to keep me out of the ER. I wasn't able to successfully get off steroids until two different friends gave me the information I needed. One suggested I ask my doctor for guaifenisen to support my lungs so I could get off the steroids and the other told me I needed to taper off steroids. I did both those things and did eventually get off steroids. I was a paranoid mess and limp dish rag for 3 or 4 months (and I had not been on a very high dose of steroids to begin with -- they give me such bad side effects, I was taking a lower dose than what my doctor prescribed). I ended up with really super bad anemia and didn't stop being a limp dishrag until I treated that. It reminds me of your comments that your son has dangerously low vitamin D levels. I am wondering if that is related to getting him to a lower dose of steroids.