Scoliosis and cf

sdelorenzo · Oct 22, 2008

My kid's pediatrician thought my daughter might have curve in her spine. So he sent both of my kids to the pediatric orthopedic dr. Their appt was yesterday. Turns out my daugther's spine looks great, but my son's spine has a 15 degree rotation. Anything above 10 is considered scoliosis. Anything above a 20-25 rotation required a brace that is to be worn 20-23 hrs a day until age 15 or 16. My son does not require treatment at this point, but both the dr and my brother-in-law who is a orthopedic dr said Jack is very young to have a 15 degree rotation and he needs to be closely watched. They can't predict the future, but most kid's tend to get worse and need a brace. Uhhh! I saw the brace and it looks huge. On top of cf, that would be a lot for Jack to deal with. Anyway, the dr mentioned that he wasn't even sure if a kid with cystic fibrosis should even wear a brace due to the restriction of the chest. While the dr said there is not a link between cystic fibrosis and scoliosis I was sure that I have heard there is a link. I found 3 studies that say around 10-15% of cf kids are thought to have scoliosis. Has anyone dealt with scoliosis and cf?
Thank you! Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Oct 22, 2008

My kid's pediatrician thought my daughter might have curve in her spine. So he sent both of my kids to the pediatric orthopedic dr. Their appt was yesterday. Turns out my daugther's spine looks great, but my son's spine has a 15 degree rotation. Anything above 10 is considered scoliosis. Anything above a 20-25 rotation required a brace that is to be worn 20-23 hrs a day until age 15 or 16. My son does not require treatment at this point, but both the dr and my brother-in-law who is a orthopedic dr said Jack is very young to have a 15 degree rotation and he needs to be closely watched. They can't predict the future, but most kid's tend to get worse and need a brace. Uhhh! I saw the brace and it looks huge. On top of cf, that would be a lot for Jack to deal with. Anyway, the dr mentioned that he wasn't even sure if a kid with cystic fibrosis should even wear a brace due to the restriction of the chest. While the dr said there is not a link between cystic fibrosis and scoliosis I was sure that I have heard there is a link. I found 3 studies that say around 10-15% of cf kids are thought to have scoliosis. Has anyone dealt with scoliosis and cf?
Thank you! Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Oct 22, 2008

My kid's pediatrician thought my daughter might have curve in her spine. So he sent both of my kids to the pediatric orthopedic dr. Their appt was yesterday. Turns out my daugther's spine looks great, but my son's spine has a 15 degree rotation. Anything above 10 is considered scoliosis. Anything above a 20-25 rotation required a brace that is to be worn 20-23 hrs a day until age 15 or 16. My son does not require treatment at this point, but both the dr and my brother-in-law who is a orthopedic dr said Jack is very young to have a 15 degree rotation and he needs to be closely watched. They can't predict the future, but most kid's tend to get worse and need a brace. Uhhh! I saw the brace and it looks huge. On top of cf, that would be a lot for Jack to deal with. Anyway, the dr mentioned that he wasn't even sure if a kid with cystic fibrosis should even wear a brace due to the restriction of the chest. While the dr said there is not a link between cystic fibrosis and scoliosis I was sure that I have heard there is a link. I found 3 studies that say around 10-15% of cf kids are thought to have scoliosis. Has anyone dealt with scoliosis and cf?
Thank you! Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Oct 22, 2008

My kid's pediatrician thought my daughter might have curve in her spine. So he sent both of my kids to the pediatric orthopedic dr. Their appt was yesterday. Turns out my daugther's spine looks great, but my son's spine has a 15 degree rotation. Anything above 10 is considered scoliosis. Anything above a 20-25 rotation required a brace that is to be worn 20-23 hrs a day until age 15 or 16. My son does not require treatment at this point, but both the dr and my brother-in-law who is a orthopedic dr said Jack is very young to have a 15 degree rotation and he needs to be closely watched. They can't predict the future, but most kid's tend to get worse and need a brace. Uhhh! I saw the brace and it looks huge. On top of cf, that would be a lot for Jack to deal with. Anyway, the dr mentioned that he wasn't even sure if a kid with cystic fibrosis should even wear a brace due to the restriction of the chest. While the dr said there is not a link between cystic fibrosis and scoliosis I was sure that I have heard there is a link. I found 3 studies that say around 10-15% of cf kids are thought to have scoliosis. Has anyone dealt with scoliosis and cf?
Thank you! Sharon, mom of Sophia, 7 and Jack, 5 both with cf

sdelorenzo · Oct 22, 2008

My kid's pediatrician thought my daughter might have curve in her spine. So he sent both of my kids to the pediatric orthopedic dr. Their appt was yesterday. Turns out my daugther's spine looks great, but my son's spine has a 15 degree rotation. Anything above 10 is considered scoliosis. Anything above a 20-25 rotation required a brace that is to be worn 20-23 hrs a day until age 15 or 16. My son does not require treatment at this point, but both the dr and my brother-in-law who is a orthopedic dr said Jack is very young to have a 15 degree rotation and he needs to be closely watched. They can't predict the future, but most kid's tend to get worse and need a brace. Uhhh! I saw the brace and it looks huge. On top of cf, that would be a lot for Jack to deal with. Anyway, the dr mentioned that he wasn't even sure if a kid with cystic fibrosis should even wear a brace due to the restriction of the chest. While the dr said there is not a link between cystic fibrosis and scoliosis I was sure that I have heard there is a link. I found 3 studies that say around 10-15% of cf kids are thought to have scoliosis. Has anyone dealt with scoliosis and cf?
 Thank you! Sharon, mom of Sophia, 7 and Jack, 5 both with cf

ej0820 · Oct 22, 2008

hello there,

I am so sorry to hear about your little one. I, too, have scoliosis and cf. My scoliosis didn't even appear until I was in my 2nd year of college and it wasn't bad. 4 years later it's still not horrible but I think it is worse than it was. It's not as great as your son's, it's just enough hurt and, no pun intended, be a pain in the neck. At the time when I first noticed a curvature in my spine, I did some research and found the same information as you...scoliosis is more common in cfers than in healthy individuals. I asked my cf doc about and he had never heard of such a thing. Maybe it's just one of those symptoms of cf that didn't make the memo <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I kind of attribute my scoliosis to lung inflammation. I hope things get better and that your son's condition improves rapidly with the brace.

ej0820 · Oct 22, 2008

hello there,

I am so sorry to hear about your little one. I, too, have scoliosis and cf. My scoliosis didn't even appear until I was in my 2nd year of college and it wasn't bad. 4 years later it's still not horrible but I think it is worse than it was. It's not as great as your son's, it's just enough hurt and, no pun intended, be a pain in the neck. At the time when I first noticed a curvature in my spine, I did some research and found the same information as you...scoliosis is more common in cfers than in healthy individuals. I asked my cf doc about and he had never heard of such a thing. Maybe it's just one of those symptoms of cf that didn't make the memo <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I kind of attribute my scoliosis to lung inflammation. I hope things get better and that your son's condition improves rapidly with the brace.

ej0820 · Oct 22, 2008

hello there,

I am so sorry to hear about your little one. I, too, have scoliosis and cf. My scoliosis didn't even appear until I was in my 2nd year of college and it wasn't bad. 4 years later it's still not horrible but I think it is worse than it was. It's not as great as your son's, it's just enough hurt and, no pun intended, be a pain in the neck. At the time when I first noticed a curvature in my spine, I did some research and found the same information as you...scoliosis is more common in cfers than in healthy individuals. I asked my cf doc about and he had never heard of such a thing. Maybe it's just one of those symptoms of cf that didn't make the memo <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I kind of attribute my scoliosis to lung inflammation. I hope things get better and that your son's condition improves rapidly with the brace.

ej0820 · Oct 22, 2008

hello there,

I am so sorry to hear about your little one. I, too, have scoliosis and cf. My scoliosis didn't even appear until I was in my 2nd year of college and it wasn't bad. 4 years later it's still not horrible but I think it is worse than it was. It's not as great as your son's, it's just enough hurt and, no pun intended, be a pain in the neck. At the time when I first noticed a curvature in my spine, I did some research and found the same information as you...scoliosis is more common in cfers than in healthy individuals. I asked my cf doc about and he had never heard of such a thing. Maybe it's just one of those symptoms of cf that didn't make the memo <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I kind of attribute my scoliosis to lung inflammation. I hope things get better and that your son's condition improves rapidly with the brace.

ej0820 · Oct 22, 2008

hello there,
 
 I am so sorry to hear about your little one. I, too, have scoliosis and cf. My scoliosis didn't even appear until I was in my 2nd year of college and it wasn't bad. 4 years later it's still not horrible but I think it is worse than it was. It's not as great as your son's, it's just enough hurt and, no pun intended, be a pain in the neck. At the time when I first noticed a curvature in my spine, I did some research and found the same information as you...scoliosis is more common in cfers than in healthy individuals. I asked my cf doc about and he had never heard of such a thing. Maybe it's just one of those symptoms of cf that didn't make the memo <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I kind of attribute my scoliosis to lung inflammation. I hope things get better and that your son's condition improves rapidly with the brace.

Kelli · Oct 22, 2008

Hi Sharon,
I'm sorry I can't tell you what degree my spine is, but I too have CF and scoliosis. They found it in high school, when in the locker rooms you have to lift your shirt and reach for your toes. Yes, embarrassing.
My back hurts (never had treatment) right where my bra strap goes. I go to the chiropractor to get lined up and that gives some relief. Exercise and hot tub help too. I have the worst posture, just because I love to slump. Like I don't think I could slump anymore than what I already do.
I haven't ever had any real problems with my back. Just one more stupid thing my body does. And the list goes on and on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelli
30 f CF

Kelli · Oct 22, 2008

Hi Sharon,
I'm sorry I can't tell you what degree my spine is, but I too have CF and scoliosis. They found it in high school, when in the locker rooms you have to lift your shirt and reach for your toes. Yes, embarrassing.
My back hurts (never had treatment) right where my bra strap goes. I go to the chiropractor to get lined up and that gives some relief. Exercise and hot tub help too. I have the worst posture, just because I love to slump. Like I don't think I could slump anymore than what I already do.
I haven't ever had any real problems with my back. Just one more stupid thing my body does. And the list goes on and on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelli
30 f CF

Kelli · Oct 22, 2008

Hi Sharon,
I'm sorry I can't tell you what degree my spine is, but I too have CF and scoliosis. They found it in high school, when in the locker rooms you have to lift your shirt and reach for your toes. Yes, embarrassing.
My back hurts (never had treatment) right where my bra strap goes. I go to the chiropractor to get lined up and that gives some relief. Exercise and hot tub help too. I have the worst posture, just because I love to slump. Like I don't think I could slump anymore than what I already do.
I haven't ever had any real problems with my back. Just one more stupid thing my body does. And the list goes on and on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelli
30 f CF

Kelli · Oct 22, 2008

Hi Sharon,
I'm sorry I can't tell you what degree my spine is, but I too have CF and scoliosis. They found it in high school, when in the locker rooms you have to lift your shirt and reach for your toes. Yes, embarrassing.
My back hurts (never had treatment) right where my bra strap goes. I go to the chiropractor to get lined up and that gives some relief. Exercise and hot tub help too. I have the worst posture, just because I love to slump. Like I don't think I could slump anymore than what I already do.
I haven't ever had any real problems with my back. Just one more stupid thing my body does. And the list goes on and on. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kelli
30 f CF

Kelli · Oct 22, 2008

Hi Sharon,
 I'm sorry I can't tell you what degree my spine is, but I too have CF and scoliosis. They found it in high school, when in the locker rooms you have to lift your shirt and reach for your toes. Yes, embarrassing.
 My back hurts (never had treatment) right where my bra strap goes. I go to the chiropractor to get lined up and that gives some relief. Exercise and hot tub help too. I have the worst posture, just because I love to slump. Like I don't think I could slump anymore than what I already do.
 I haven't ever had any real problems with my back. Just one more stupid thing my body does. And the list goes on and on. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Kelli
 30 f CF

dukeblue1206 · Oct 23, 2008

Hi. Sorry to hear about your child. I to have CF and Scoliosis. Once mine was finally detected at the age of 13, i was past the point of a brace and required surgery to have 2 titanium rods inserted to straighten me back up. Im 27 now and have no major issues with my back. I always had back issues a little growing up but never really complained about it. Guess having CF i just put the back pain on the back burner. My parents never noticed anything cause i never complained and docs never mentioned it. One day my mom was giving me a back scratch and i was leaned way over and she was like "holy cow" and she ran her fingers down my crooked spine. Went to a local doc and he sent me to Duke where i did my CF peds at the time. They ended up doing the surgery. The recovery was 0% fun and 100% pain. I was out of school for 2 months until i was fully recovered. Now i have no issues besides the minor ache or pain but nothing like before. Now all i do is set off metal detectors..lol..Hopefully your son's will just stay the same and not get worse. Ive known people to do that as well with no treatment. I can see where having to use a brace could be bad for the lungs and also for the self esteem. CF is enough for a kid to have to handle through school let alone having to wear a brace. If it does end up needing surgery, just do your research and do the surgery wherever he goes to CF clinic, that way the CF docs are there to look over the lungs. It was a major surgery. 7 hours for me and it took a toll on my lungs for a bit. Hate to sound so dire about it all. Figured i would just give you how mine went down. Feel free to ask me any questions you may have.

dukeblue1206 · Oct 23, 2008

Hi. Sorry to hear about your child. I to have CF and Scoliosis. Once mine was finally detected at the age of 13, i was past the point of a brace and required surgery to have 2 titanium rods inserted to straighten me back up. Im 27 now and have no major issues with my back. I always had back issues a little growing up but never really complained about it. Guess having CF i just put the back pain on the back burner. My parents never noticed anything cause i never complained and docs never mentioned it. One day my mom was giving me a back scratch and i was leaned way over and she was like "holy cow" and she ran her fingers down my crooked spine. Went to a local doc and he sent me to Duke where i did my CF peds at the time. They ended up doing the surgery. The recovery was 0% fun and 100% pain. I was out of school for 2 months until i was fully recovered. Now i have no issues besides the minor ache or pain but nothing like before. Now all i do is set off metal detectors..lol..Hopefully your son's will just stay the same and not get worse. Ive known people to do that as well with no treatment. I can see where having to use a brace could be bad for the lungs and also for the self esteem. CF is enough for a kid to have to handle through school let alone having to wear a brace. If it does end up needing surgery, just do your research and do the surgery wherever he goes to CF clinic, that way the CF docs are there to look over the lungs. It was a major surgery. 7 hours for me and it took a toll on my lungs for a bit. Hate to sound so dire about it all. Figured i would just give you how mine went down. Feel free to ask me any questions you may have.

dukeblue1206 · Oct 23, 2008

Hi. Sorry to hear about your child. I to have CF and Scoliosis. Once mine was finally detected at the age of 13, i was past the point of a brace and required surgery to have 2 titanium rods inserted to straighten me back up. Im 27 now and have no major issues with my back. I always had back issues a little growing up but never really complained about it. Guess having CF i just put the back pain on the back burner. My parents never noticed anything cause i never complained and docs never mentioned it. One day my mom was giving me a back scratch and i was leaned way over and she was like "holy cow" and she ran her fingers down my crooked spine. Went to a local doc and he sent me to Duke where i did my CF peds at the time. They ended up doing the surgery. The recovery was 0% fun and 100% pain. I was out of school for 2 months until i was fully recovered. Now i have no issues besides the minor ache or pain but nothing like before. Now all i do is set off metal detectors..lol..Hopefully your son's will just stay the same and not get worse. Ive known people to do that as well with no treatment. I can see where having to use a brace could be bad for the lungs and also for the self esteem. CF is enough for a kid to have to handle through school let alone having to wear a brace. If it does end up needing surgery, just do your research and do the surgery wherever he goes to CF clinic, that way the CF docs are there to look over the lungs. It was a major surgery. 7 hours for me and it took a toll on my lungs for a bit. Hate to sound so dire about it all. Figured i would just give you how mine went down. Feel free to ask me any questions you may have.

dukeblue1206 · Oct 23, 2008

Hi. Sorry to hear about your child. I to have CF and Scoliosis. Once mine was finally detected at the age of 13, i was past the point of a brace and required surgery to have 2 titanium rods inserted to straighten me back up. Im 27 now and have no major issues with my back. I always had back issues a little growing up but never really complained about it. Guess having CF i just put the back pain on the back burner. My parents never noticed anything cause i never complained and docs never mentioned it. One day my mom was giving me a back scratch and i was leaned way over and she was like "holy cow" and she ran her fingers down my crooked spine. Went to a local doc and he sent me to Duke where i did my CF peds at the time. They ended up doing the surgery. The recovery was 0% fun and 100% pain. I was out of school for 2 months until i was fully recovered. Now i have no issues besides the minor ache or pain but nothing like before. Now all i do is set off metal detectors..lol..Hopefully your son's will just stay the same and not get worse. Ive known people to do that as well with no treatment. I can see where having to use a brace could be bad for the lungs and also for the self esteem. CF is enough for a kid to have to handle through school let alone having to wear a brace. If it does end up needing surgery, just do your research and do the surgery wherever he goes to CF clinic, that way the CF docs are there to look over the lungs. It was a major surgery. 7 hours for me and it took a toll on my lungs for a bit. Hate to sound so dire about it all. Figured i would just give you how mine went down. Feel free to ask me any questions you may have.

dukeblue1206 · Oct 23, 2008

Hi. Sorry to hear about your child. I to have CF and Scoliosis. Once mine was finally detected at the age of 13, i was past the point of a brace and required surgery to have 2 titanium rods inserted to straighten me back up. Im 27 now and have no major issues with my back. I always had back issues a little growing up but never really complained about it. Guess having CF i just put the back pain on the back burner. My parents never noticed anything cause i never complained and docs never mentioned it. One day my mom was giving me a back scratch and i was leaned way over and she was like "holy cow" and she ran her fingers down my crooked spine. Went to a local doc and he sent me to Duke where i did my CF peds at the time. They ended up doing the surgery. The recovery was 0% fun and 100% pain. I was out of school for 2 months until i was fully recovered. Now i have no issues besides the minor ache or pain but nothing like before. Now all i do is set off metal detectors..lol..Hopefully your son's will just stay the same and not get worse. Ive known people to do that as well with no treatment. I can see where having to use a brace could be bad for the lungs and also for the self esteem. CF is enough for a kid to have to handle through school let alone having to wear a brace. If it does end up needing surgery, just do your research and do the surgery wherever he goes to CF clinic, that way the CF docs are there to look over the lungs. It was a major surgery. 7 hours for me and it took a toll on my lungs for a bit. Hate to sound so dire about it all. Figured i would just give you how mine went down. Feel free to ask me any questions you may have.

Scoliosis and cf

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