Dr Hive, scoliosis causes for adolescents?

[Lovingparent]

Edited for privacy.

[TrulySusan]

My DH works in pediatric orthopedics and is adamantly saying (while rolling his eyes in dismay) don't worry about this too much.  He suggests that maybe this ortho doesn't see a lot of scoliosis cases and that where DH works they wouldn't think much of a 16 degree curve, absent of other serious symptoms.  16 degree is a very minor curve, usually only treated by observation. Please make sure you have a doctor you can trust, preferably a pediatric orthopedist. 

[ktgrok]

If it helps, my son has mild scoliosis. And no other problems. It wasn't diagnosed until he was a teen, and he broke a few vertebrae while wresting with friends. The xrays were for the break but showed he had the bend. The doctor said the only relation was that because of the curve maybe he had a bit less flexibility, but other than that the curve wasn't anything to worry about. 

 

Hope that helps.

 

(oh, and he recovered from the fractured vertebrae just fine)

[Lovingparent]

My DH works in pediatric orthopedics and is adamantly saying (while rolling his eyes in dismay) don't worry about this too much.  He suggests that maybe this ortho doesn't see a lot of scoliosis cases and that where DH works they wouldn't think much of a 16 degree curve, absent of other serious symptoms.  16 degree is a very minor curve, usually only treated by observation. Please make sure you have a doctor you can trust, preferably a pediatric orthopedist. 

Thank you for your response! His degree has changed since early May that we had the first x-ray. He is now at 22 degrees. The doctor is not a pediatric orthopedist but  I chose him, because he seemed to have experience with scoliosis from a web search. I guess it's a good advice to get maybe a second opinion. 

[ktgrok]

Google tells me that adolescence is the time that it is usally found, and that earlier onset is more likely to be associated with other problems. 

[Amy in NH]

One of my boys was diagnosed with adolescent idiopathic scoliosis.  Apparently it is pretty common, which is why they check for it in late elementary-early high school.  He saw an pediatric orthopedist at Dartmouth Medical Center, and is now under observation.  The orthopedist was not hugely concerned, and said that some boys will grow out of it, while some will get a little worse.  It is very rare that it progresses to such a degree that surgery is required.  She seemed to think it was a good thing that he is active in core-strengthening activities like skiing and gymnastics.

 

According to the Scoliosis Research Society "there are no identifiable causes for this condition today. Despite this, we currently have accurate methods to determine the risk for curve progression of scoliosis and good methods of treatment."  I would hazard a guess that worrying isn't one of them...

 

I had a coworker who had scoliosis as an adolescent that was severe enough to require surgery.  She had metal rods down each side of her spine.  I never knew until one day she couldn't bend over to tie a sneaker (she usually wore pumps).  She was a happy, productive adult. 

 

[The Girls' Mom]

My oldest also has mild scoliosis, not diagnosed until she was 15.  No treatment, and the doctor wasn't concerned, other than noting that she may have slightly more trouble with back pain as she ages.  She also tip-toe walked and walked on the tops of her feet a lot at a smaller child.  

[wapiti]

I was under the impression that one possible cause of scoliosis can be a tethered spinal cord.  (My ds had a tethered cord but no scoliosis.  He had surgery to release the tether at 5 y.o.)  A tethered cord would be visible on an MRI.

[MyThreeSons]

Based on the things the doctor checked, I'd bet he is concerned about the possibility of Marfan Syndrome or Ehlers Danlos syndrome. Both are connective tissue disorders, with an overlapping set of symptoms. 

 

My Dad had Marfan, and my youngest son was diagnosed with it last week. My son's cardiologist has requested an echocardiogram for me this Friday. Is your son particularly tall and thin? Marfan folks aren't always tall and thin, but that's usually what first triggers the concern of doctors. Are his joints "loose"? 

 

Reading about either Marfan or E-D can be overwhelming, but I do believe that knowledge is power in this case. Hopefully, your son "just" has scoliosis, exacerbated by a growth spurt. My son's scoliosis has been helped tremendously by his chiropractor over the past year. And a friend's daughter just underwent surgery that corrected her more severe scoliosis literally overnight by quite a bit and will continue to make it better over time. 

 

Prayers and hugs for you.

[MyThreeSons]

I was under the impression that one possible cause of scoliosis can be a tethered spinal cord.  (My ds had a tethered cord but no scoliosis.  He had surgery to release the tether at 5 y.o.)  A tethered cord would be visible on an MRI.

 

And now, they do an amazing surgical procedure called spinal tethering to correct scoliosis. 

 

http://www.shrinershospitalsforchildren.org/news/ScoliAwarenessMonth_PHL

[marbel]

Both my kids have scoliosis, discovered during routine physicals at about age 12 for my daughter and 14 for my son.  They are considered idiopathic scoliosis, and there was never any concern about the cause. 

 

I don't know the number of degrees of my son's curve.  It is fairly minor.  He is seen every year.  My daughter's is more severe; she wore a brace for a number of years and her curve is getting close to the point of surgery.  

 

My husband's sister, and a male cousin of mine, have scoliosis.  So it runs in the family a bit.

 

 

 

 

 

[Supertechmom]

My second son was in a similar fix except he had severe headaches too.   He had not had any trouble before but at one well visit he had grown 5 inches in a short time and had a 16 degree curve.  The curve was found in trying to solve the headaches.

 

 I took him to the chiro after the ortho was 1) scary in his predictions 2) and then a somewhat laizeafaire approach.  The chiro stated he could not fix the scoliosis but he might could keep it from getting worse.  

 

Anyway, it at least was an approach that made sense as he also provided back exercises to strengthen the back muscles and some physical therapy instead of the "wear a back brace until 25 years old and do surgery to correct it if worse" approach of the ortho.   Which wouldn't solve the headaches that started the whole process.

 

 We did 3 times a week treatments for months and slowly progressed to once in awhile visits.   This started when he was 10. He's now 14.  Now we go whenever my kid says his back feels out of whack or when he has a growth spurt.  The curve is now like 2 degrees.  The ped said sometimes curves develop in periods of fast growth and chiro treatments can help those.  The chiro said sometimes you can straighten the curve out during growth spurts as the bones and muscles move and grow. Between the exercises and the chiro treatments it worked for us as it seems to be related just to fast growth.  We just keep up with the growth spurts and go back to weekly visits during those times.

[Jilly]

My son has scoliosis and a host of other issues. When he was first diagnosed there was concern that he might have Marfan because of other symptoms that he had including being thin and tall and having stretch marks. We saw all the specialists, and I will say it was quite a scary time. The visits to the opthamologist and cardiologist were especially nerve wracking. I did hear from many other parents at the same time who were going through the same thing. It seems when a boy has scoliosis and exhibits any other sign the doctors like to rule out a connective tissue disorder. Most likely it is nothing, but it is good to rule it out.  :grouphug:

 

 

[Lovingparent]

Thank you all for your responses. After some research, I think the doctor fears my son has Marfan syndrome. It fits with his questions about heart, eyes and skin marks. My son is tall but at his last physical he was at 75% so he is not that tall. Considering that his father is 6'4", I don't think he is tall enough to cause concern. He is very thin though. We had an echocardiogram done almost 2 years ago when his pediatrician first heard the murmur. The cardiologist told us at the time that the murmur was harmless. I am not sure if that can change with time. I still remember how nerve wracking and agonizing was to visit the cardiologist. I was hoping we wouldn't have to do it again.

[Amy in NH]

Thank you all for your responses. After some research, I think the doctor fears my son has Marfan syndrome. It fits with his questions about heart, eyes and skin marks. My son is tall but at his last physical he was at 75% so he is not that tall. Considering that his father is 6'4", I don't think he is tall enough to cause concern. He is very thin though. We had an echocardiogram done almost 2 years ago when his pediatrician first heard the murmur. The cardiologist told us at the time that the murmur was harmless. I am not sure if that can change with time. I still remember how nerve wracking and agonizing was to visit the cardiologist. I was hoping we wouldn't have to do it again.

 

A different son has a murmur due to a bicuspid aortic valve.  Now that we know what it is, we've gone for a follow-up every 3 years since he was 5 years old.  It is always an echo followed by a consultation with the pedcard, and it has always been very low stress.

 

Did they tell you what your son's murmur is caused by?

 

[Joyofsixreboot]

My dd had scoliosis and surgery to correct it at 15. My understanding is that idiopathic scoliosis while not common,miss the most often diagnosed scoliosis. Perhaps this doctor is just a cautious type. If you are unhappy I would seek another opinion but I wouldn't freak out yet.:grouphug:

[Pawz4me]

 My youngest son has mild scoliosis.  His was first discovered around age 12 or 13 when we noticed his gait was off.  A visit to his pediatrician led to a referral to the pediatric orthopedic department at a university teaching hospital, and from there he had the whole work up.  My understanding is that the MRI is mostly to check for a tethered cord.  DS's scoliosis turned out to be idiopathic, although a couple of issues did show up on the MRI (a spinal cyst and spondylolisthesis).  They wanted to follow DS a few years until he went through his biggest growth spurt, as the degree of curvature frequently gets worse during that time.  We were told last year (when DS was 15) that routine monitoring was no longer needed and that he only needed to be seen if he had a problem.

 

As MyThreeSons said, scoliosis can be a symptom of some connective tissue disorders.  But keep in mind that idiopathic scoliosis isn't uncommon, and neither are heart murmurs.  So just because you son has each of those doesn't necessarily mean he has anything more.  But it is a good idea to get checked out, of course.

[SebastianCat]

I have a friend whose DS was recently diagnosed with Marfan. It was very scary for them to go through the diagnosis, but ultimately just means that he needs to be monitored closely. He is otherwise healthy.

 

Scoliosis runs in my DH's family. His sister and two neices had it. Sister and one neice wore a brace and ultimately had surgery, while the other neice has seen her curve controlled just with the brace. If you are concerned, I would seek a 2nd opinion from an orthopedist who specializes in scoliosis. But it does sound as if the doctor is concerned more about the possibility of Marfan.

[jenn-]

My dd has what I'll call growth scoliosis. Right before she hits a large growth spurt, her spine curves. This has happened since she was 9. A couple of years ago it got bad enough (after having straightened out at 9) that we were referred to a scoliosis specialist. She also had an MRI in connection to the appointment. He determined that she was okay after viewing it. Sure enough, 4" later and she was straight again. Right now she has 3 degree curve, but since we've been told she wasn't done growing based off of X-rays, no one is overly concerned (well my wallet might be if she needs another wardrobe).

[ktgrok]

Thank you all for your responses. After some research, I think the doctor fears my son has Marfan syndrome. It fits with his questions about heart, eyes and skin marks. My son is tall but at his last physical he was at 75% so he is not that tall. Considering that his father is 6'4", I don't think he is tall enough to cause concern. He is very thin though. We had an echocardiogram done almost 2 years ago when his pediatrician first heard the murmur. The cardiologist told us at the time that the murmur was harmless. I am not sure if that can change with time. I still remember how nerve wracking and agonizing was to visit the cardiologist. I was hoping we wouldn't have to do it again.

 

Do we have the same kid? Lol, my son had the murmur too, and had an echo, and it was benign. Just heard because he is so thin. He also has mild scoliosis and stretch marks from growing. But half his friends have stretch marks from growing, and his father does too. His father has pretty much every indicator of Marfan except he doesn't have Marfan. If you didn't know he'd been screened you would think he was the poster child for it. 

[Tiramisu]

My DH works in pediatric orthopedics and is adamantly saying (while rolling his eyes in dismay) don't worry about this too much.  He suggests that maybe this ortho doesn't see a lot of scoliosis cases and that where DH works they wouldn't think much of a 16 degree curve, absent of other serious symptoms.  16 degree is a very minor curve, usually only treated by observation. Please make sure you have a doctor you can trust, preferably a pediatric orthopedist. 

 

I completely agree that a 16 degree curve wouldn't be much to worry about. We've been through that ourselves. And I saw that the OP specified that it's now higher and near the point where a doctor would be concerned.

 

However, it is a pet peeve of mine that orthopedists and other surgeons are not as informed as they should be about inherited connective tissue disorders and are failing to take notice of those other serious symptoms as your dh mentioned. I know a family whose child was seen by doctors at five nationally leading hospitals for a spine issue that first presented as scoliosis. Among the doctors who examined her were four internationally recognized pediatric orthopedists, and only the last doctor picked up the clues that led to an echocardiogram and a diagnosis that could have saved her life. The signs, including body structure and eye issues, were so extremely obvious that it was hard to believe anyone could have missed it. 

 

I was told by two orthopedists not to worry about my dd's probable connective tissue disorder and neither suggested an echo, which knowing what I know now isn't the best course, especially before a surgery. 

[Tiramisu]

I have a friend whose DS was recently diagnosed with Marfan. It was very scary for them to go through the diagnosis, but ultimately just means that he needs to be monitored closely. He is otherwise healthy.

 

Scoliosis runs in my DH's family. His sister and two neices had it. Sister and one neice wore a brace and ultimately had surgery, while the other neice has seen her curve controlled just with the brace. If you are concerned, I would seek a 2nd opinion from an orthopedist who specializes in scoliosis. But it does sound as if the doctor is concerned more about the possibility of Marfan.

 

There are very specific signs for Marfan and a genetic test. However, Ehlers-Danlos Syndrome can sometimes present similarly in body type. There are different types of EDS and there are tests for some types but not for the most common type. EDS will also affect surgeries and healing but except for one specific type, there's not the cardiovascular risk like there is in Marfan.

 

I'm just saying this because I wish doctors would screen for EDS as well as Marfan when evaluating for surgery.

[MEmama]

My son was diagnosed last year with mild scoliosis. It totally freaked me out but his doctor was completely unconcerned and assured me it's not at all unusual. DS is very athletic and hasn't had any related problems. It will be monitored, of course, but is generally thought that it will take care of itself as he grows.

[Tiramisu]

Thank you all for your responses. After some research, I think the doctor fears my son has Marfan syndrome. It fits with his questions about heart, eyes and skin marks. My son is tall but at his last physical he was at 75% so he is not that tall. Considering that his father is 6'4", I don't think he is tall enough to cause concern. He is very thin though. We had an echocardiogram done almost 2 years ago when his pediatrician first heard the murmur. The cardiologist told us at the time that the murmur was harmless. I am not sure if that can change with time. I still remember how nerve wracking and agonizing was to visit the cardiologist. I was hoping we wouldn't have to do it again.

 

When my oldest was screened for Marfan, they were more interested in the ratio of her armspan to her height than the fact that she was tall. They asked about any problems with her eyes, looked in her mouth for a high palate, and looked at the length of her fingers. She didn't have those signs, but we got an echo anyway for peace of mind. In addition to the skin marks, she has very mild scoliosis and kyphosis, but so slight it was nothing to worry about. She has an unspecified "connective tissue difference" with loose joints and one leaky valve. Her case is complicated, though, because she is also has signs of an autoimmune connective tissue disease.

 

I have a leaky valve and my doctor told me I should get echos every couple of years to make sure it doesn't change. I'm not sure what the recommendations are for youth. 

 

FWIW, my pediatrician and primary care doctor can order echocardiograms. You can have them specify that it's to rule out Marfan and other connective tissue disorders when they write the script. That could save you a trip to the cardiologist. I'm just saying this because it might make things easier. I've realized that the cardiologists just read the report. I've never had one actually look at the CD of the images.

 

ETA: My second dd had high grade spondylolisthesis found at age 8 and surgically corrected at age nine. Since that time, I've met several other families that went through the same thing, and it was as common as not that the problem was first noticed because of the scoliosis. I think all of them showed signs of connective tissue laxity. Because of this, I believe that there's a strong connection between spine issues and loose joints. I think it's never a bad idea to cover your bases though the chance that there's an underlying problem which will cause other problems is actually very, very small.

[MyThreeSons]

But half his friends have stretch marks from growing, and his father does too.

 

Several years ago, my middle son had surgery for a cyst near his tailbone. After the surgery, the doctor and the head nurse took me aside and told me that although the surgery went well, they couldn't release my son to me because they had contacted CPS. They both looked at the horizontal striations (stretch marks) on ds's back and concluded that I had been beating him with a cat of nine tails.  :crying:

 

I was in shock. All three of my sons have those stretch marks. I almost called in my oldest son, who was in the waiting room, to show them and get him to vouch for us. I couldn't believe that they -- especially this surgeon who specializes in surgery on backsides -- had never seen such stretch marks on a young man before. 

 

I never did hear from CPS, but when ds went for his post-op checkup, the doctor took him aside and basically told ds that he would help him. Ds assured him that his parents did not beat him, and that he felt comfortable going home. 

[Jilly]

Do we have the same kid? Lol, my son had the murmur too, and had an echo, and it was benign. Just heard because he is so thin. He also has mild scoliosis and stretch marks from growing. But half his friends have stretch marks from growing, and his father does too. His father has pretty much every indicator of Marfan except he doesn't have Marfan. If you didn't know he'd been screened you would think he was the poster child for it. 

 

My son has an murmur too. We didn't know until we went to the cardiologist to rule out Marfan. Apparently a murmur is fairly common to have. 

 

And stretch marks? I had no idea stretch marks were so common in teens until I started to talk to other parents. It seems that many kids get them when they go through a growth spurt. 

[MedicMom]

I sent you a pM.

[MyThreeSons]

When my oldest was screened for Marfan, they were more interested in the ratio of her armspan to her height than the fact that she was tall. They asked about any problems with her eyes, looked in her mouth for a high palate, and looked at the length of her fingers. She didn't have those signs, but we got an echo anyway for peace of mind. In addition to the skin marks, she has very mild scoliosis and kyphosis, but so slight it was nothing to worry about. She has an unspecified "connective tissue difference" with loose joints and one leaky valve. Her case is complicated, though, because she is also has signs of an autoimmune connective tissue disease.

 

I have a leaky valve and my doctor told me I should get echos every couple of years to make sure it doesn't change. I'm not sure what the recommendations are for youth. 

 

FWIW, my pediatrician and primary care doctor can order echocardiograms. You can have them specify that it's to rule out Marfan and other connective tissue disorders when they write the script. That could save you a trip to the cardiologist. I'm just saying this because it might make things easier. I've realized that the cardiologists just read the report. I've never had one actually look at the CD of the images.

 

ETA: My second dd had high grade spondylolisthesis found at age 8 and surgically corrected at age nine. Since that time, I've met several other families that went through the same thing, and it was as common as not that the problem was first noticed because of the scoliosis. I think all of them showed signs of connective tissue laxity. Because of this, I believe that there's a strong connection between spine issues and loose joints. I think it's never a bad idea to cover your bases though the chance that there's an underlying problem which will cause other problems is actually very, very small.

 

When my youngest son was about 5yo, a routine eye exam revealed that he had dislocated lenses in his eyes. That optometrist referred us to a pediatric ophthalmologist, who suspected Marfan. She sent us to a genetics clinic, where they did the armspan to height ratio calculation, the thumb bending test, and a few other things. But they did not run DNA. Based on those "tests", they said no Marfan. Now, 15 years later, the cardiologist is saying he does have Marfan Syndrome. Similarly, I was ruled out 30 years ago (when my Dad was diagnosed with Marfan) because of similar superficial tests.

 

Ds's cardiologist has me going for an echo tomorrow because, let's face it, the odds are extremely unlikely that both my Dad and my son would have the condition without me having it. My Dad having it means a 50% chance I have it. I cannot be a "carrier" without having it. I do have several symptoms associated with Marfan, although they are presenting as mild and don't much interfere with life activities. The big concern will be whether I have an enlarged aortic root, heart valve problems, or any evidence of aortic dissection beginning. 

[Tiramisu]

When my youngest son was about 5yo, a routine eye exam revealed that he had dislocated lenses in his eyes. That optometrist referred us to a pediatric ophthalmologist, who suspected Marfan. She sent us to a genetics clinic, where they did the armspan to height ratio calculation, the thumb bending test, and a few other things. But they did not run DNA. Based on those "tests", they said no Marfan. Now, 15 years later, the cardiologist is saying he does have Marfan Syndrome. Similarly, I was ruled out 30 years ago (when my Dad was diagnosed with Marfan) because of similar superficial tests.

 

Ds's cardiologist has me going for an echo tomorrow because, let's face it, the odds are extremely unlikely that both my Dad and my son would have the condition without me having it. My Dad having it means a 50% chance I have it. I cannot be a "carrier" without having it. I do have several symptoms associated with Marfan, although they are presenting as mild and don't much interfere with life activities. The big concern will be whether I have an enlarged aortic root, heart valve problems, or any evidence of aortic dissection beginning. 

 

I've also got the impression from my reading that the Marfan genetic test isn't always 100% conclusive. I can't remember exactly but perhaps they look at a number of genes that influence fibrillin expression. I think that must make it very confusing when there's a mild presentation.

 

There was something I ran across about a case study involving two siblings that both had Marfan but the physical characteristics were quite different and I think diet was looked at as a reason for the difference. Maybe the conclusion was that a good diet might influence gene expression and result in less severe characteristics.

 

I know in EDS there's a lot of difference in expression among family members. It's a big question as to why some people are more affected than others. Women tend to get worse at puberty and men often get better, so there's definitely a hormone influence.

[Tiramisu]

Several years ago, my middle son had surgery for a cyst near his tailbone. After the surgery, the doctor and the head nurse took me aside and told me that although the surgery went well, they couldn't release my son to me because they had contacted CPS. They both looked at the horizontal striations (stretch marks) on ds's back and concluded that I had been beating him with a cat of nine tails.  :crying:

 

I was in shock. All three of my sons have those stretch marks. I almost called in my oldest son, who was in the waiting room, to show them and get him to vouch for us. I couldn't believe that they -- especially this surgeon who specializes in surgery on backsides -- had never seen such stretch marks on a young man before. 

 

I never did hear from CPS, but when ds went for his post-op checkup, the doctor took him aside and basically told ds that he would help him. Ds assured him that his parents did not beat him, and that he felt comfortable going home. 

 

That's a very scary story. I'm so sorry that happened.

 

I've had similar fears because my dd's bruise very easily. When my youngest was born with a mongolian spot, I made sure it was noted on her medical chart in case anyone was unfamiliar with them and suspected the mark was caused by abuse.

[jenn-]

Several years ago, my middle son had surgery for a cyst near his tailbone. After the surgery, the doctor and the head nurse took me aside and told me that although the surgery went well, they couldn't release my son to me because they had contacted CPS. They both looked at the horizontal striations (stretch marks) on ds's back and concluded that I had been beating him with a cat of nine tails.  :crying:

 

I was in shock. All three of my sons have those stretch marks. I almost called in my oldest son, who was in the waiting room, to show them and get him to vouch for us. I couldn't believe that they -- especially this surgeon who specializes in surgery on backsides -- had never seen such stretch marks on a young man before. 

 

I never did hear from CPS, but when ds went for his post-op checkup, the doctor took him aside and basically told ds that he would help him. Ds assured him that his parents did not beat him, and that he felt comfortable going home. 

 

I was also questioned during a routine scoliosis test in high school because of the horizontal stretch marks.  They had to make sure I wasn't being whipped.  I didn't know anyone else had them until I went to college and one of my roommates had them as well.

[ktgrok]

Several years ago, my middle son had surgery for a cyst near his tailbone. After the surgery, the doctor and the head nurse took me aside and told me that although the surgery went well, they couldn't release my son to me because they had contacted CPS. They both looked at the horizontal striations (stretch marks) on ds's back and concluded that I had been beating him with a cat of nine tails.  :crying:

 

I was in shock. All three of my sons have those stretch marks. I almost called in my oldest son, who was in the waiting room, to show them and get him to vouch for us. I couldn't believe that they -- especially this surgeon who specializes in surgery on backsides -- had never seen such stretch marks on a young man before. 

 

I never did hear from CPS, but when ds went for his post-op checkup, the doctor took him aside and basically told ds that he would help him. Ds assured him that his parents did not beat him, and that he felt comfortable going home. 

 

 

That's CRAZY! My ex (son's father) has the same stretch marks, and my son's best friend has them. I thought it was just a normal boy thing! Girls got stretch marks on their boobs, guys got them on their backs if they were tall. Insane they didn't recognize it!

[Lovingparent]

I am going through the motions right now. I thought it was a good thing that the doctor wanted to check everything out. However,  we went there on Monday. The doctor presented things somewhat gloomy and said he would ask for MRIs. Now it's Thrusday, three full days after our visit and I called his office and they told me they haven't even filed the request, because the doctor hasn't dictated his report yet. Is that weird or what? 

By the way, I did find this doctor through the Scoliosis Research Society website, so I know he does have experience with scoliosis. But I do question his competency at this point.

[J-rap]

I haven't read all of the responses, but I thought scoliosis wasn't caused by anything, you were just born with it.  In our family, several of us have a rounded spine, though they don't call it true scoliosis.  It makes it harder for us to stand up straight.  It's just in our genetic makeup.  My kids who have had this have worked hard on strengthening their core.  This is the only thing that has helped, and it has helped tremendously, so that you don't even notice it anymore.  (But for them, it is still a conscious effort to stand up straight.)

 

My daughter did have some strange curving of the spine in the past several years.  A massage therapist was able to detect that it was how she was holding her guitar.  She held it in a rather unique way on one side, and it caused the muscles on that one side to develop so much that her spine had to curve to accommodate them.  She is now working on holding her guitar differently.

 

I don't know if any of this is helpful in your situation, but thought I'd pass it along.

[MyThreeSons]

I haven't read all of the responses, but I thought scoliosis wasn't caused by anything, you were just born with it.  

 

There are different causes of scoliosis. When there is no other known condition associated with it, they call it "idiopathic". It is often seen in adolescents during periods of rapid growth. It sometimes straightens out on its own, or can be improved with chiropractic care or physical therapy in some cases. In severe cases, there are several different surgical procedures that can be done to improve it. 

 

Scoliosis is a curving of the spine from side to side, as viewed from the back or front. It is often an "S" shape or sometimes more like a "C". The rounding of the shoulders at the upper back, as viewed from the side, is known as kyphosis. Many of us have a little of both. 

 

Kyphosis is the one that will prompt Grandmas to say "Stand up straight!" 

 

I hope this helps.

 

(edited to correct spelling)

Edited June 5, 2015 by MyThreeSons

[Tsuga]

I have scoliosis. It's usually diagnosed among pre-teens and teens because before that children are unreliable stander-uppers, I suppose, and a lot can get corrected.

 

In my case, improving my core muscles through high-quality strength training has helped me gain .5 inches in height (early 20s). Sitting at a desk doesn't hurt but it makes me shorter.

 

Re: Stretch marks: that is insane. Don't many, many people get stretch marks?!? And they look NOTHING like marks from beating. I could pick a stretch mark of of 10 different scars. What a horrible situation.

[Tiramisu]

There are different causes of scoliosis. When there is no other known condition associated with it, they call it "idiopathic". It is often seen in adolescents during periods of rapid growth. It sometimes straightens out on its own, or can be improved with chiropractic care or physical therapy in some cases. In sever cases, there are several different surgical procedures that can be done to improve it. 

 

Scoliosis is a curving of the spine from side to side, as viewed from the back or front. It is often an "S" shape or sometimes more like a "C". The rounding of the shoulders at the upper back, as viewed from the side, is known as kyphosis. Many of us have a little of both.

 

Kyphosis is the one that will prompt Grandmas to say "Stand up straight!" 

 

I hope this helps.

 

I like the way our spine surgeon put it when talking about the minor curves many of us have--"nothing to worry about in the world of spine asymmetry".

 

My dd was often told to stand up straight. :(

[Tiramisu]

I haven't read all of the responses, but I thought scoliosis wasn't caused by anything, you were just born with it.  In our family, several of us have a rounded spine, though they don't call it true scoliosis.  It makes it harder for us to stand up straight.  It's just in our genetic makeup.  My kids who have had this have worked hard on strengthening their core.  This is the only thing that has helped, and it has helped tremendously, so that you don't even notice it anymore.  (But for them, it is still a conscious effort to stand up straight.)

 

My daughter did have some strange curving of the spine in the past several years.  A massage therapist was able to detect that it was how she was holding her guitar.  She held it in a rather unique way on one side, and it caused the muscles on that one side to develop so much that her spine had to curve to accommodate them.  She is now working on holding her guitar differently.

 

I don't know if any of this is helpful in your situation, but thought I'd pass it along.

 

Right. I think it's important to remember that even when there's a cause for scoliosis developing core muscles can still help in some cases. My dd with the other spine problem had PT before surgery to see if it would help. It only got worse and started to affected her walking, so surgery was our only option. We went to PT again post-surgery and were told it was very important to keep her core muscles strong for her future spine health. It might be different with scoliosis which fuses large sections of the spine, but my dd had a small section of her lower spine fused which makes the next section up more vulnerable to stresses.

[Pawz4me]

Yes to PT/core strengthening.  DS did PT for quite awhile.  He had some muscle imbalances and they wanted to work on his core strength due to the scoliosis and spondylolisthesis.

[Tiramisu]

I am going through the motions right now. I thought it was a good thing that the doctor wanted to check everything out. However,  we went there on Monday. The doctor presented things somewhat gloomy and said he would ask for MRIs. Now it's Thrusday, three full days after our visit and I called his office and they told me they haven't even filed the request, because the doctor hasn't dictated his report yet. Is that weird or what? 

By the way, I did find this doctor through the Scoliosis Research Society website, so I know he does have experience with scoliosis. But I do question his competency at this point.

 

That sounds annoying but I wouldn't worry about having to rush. I'd go through the motions with him for now, but if it gets to the point that surgery is suggested, I'd definitely look into finding the best doctor and even then getting second and third opinions.

 

For now, I'd try to look into getting the MRI at a place where they do a lot of spine surgeries because they will have radiologists who really know their stuff. I've learned that certain specialists can be very fussy about where the MRI's are done and who's reading them. They won't always trust a radiologist's report if they don't know whose reading it and will want to look at it themselves. Get the MRI report sent to you but ask for the CD of the films to take home with you that day. Then you can conveniently have them with you for a second opinion if that's even necessary. 

 

I think it's important to take one day at at time. More often than not, these tests reveal nothing serious. Yes, they make us stressed, but then we move on and it's just a memory. During the times these tests revealed serious things, I prayed (not sure of your beliefs) and asked for the right people to be placed in our path that would help us figure things out and get the care we needed. Those prayers were always answered very clearly and specifically. So I learned,when other things came up, to anticipate that the right people would come into our lives to help us and to trust that everything would be okay.

 

In the beginning of our medical issues, I intentionally cultivated a spirit of gratitude by always reminding myself how fortunate we were to live in the time and place we did. We had a wonderful choice of doctors and hospitals within driving distance, where I knew we would get the best care there was to be had in the world. The technology existed to get the problem fixed. That process might not be easy or fun, but there would be a healthy normal life at the end for my child. By continually reminding myself of that, it helped alleviate some of the stress. Not that it still wasn't hard. But it helped.

 

We've got a follow up brain MRI for one of my dc next month that will either leave me incredibly relieved or incredibly scared. The doctor told us what facility to use and what time to schedule the appointment so that the right radiologist can read it immediately. It's nerve-wracking but there's some reassurance in knowing we are getting the best care.

[wapiti]

I am going through the motions right now. I thought it was a good thing that the doctor wanted to check everything out. However,  we went there on Monday. The doctor presented things somewhat gloomy and said he would ask for MRIs. Now it's Thrusday, three full days after our visit and I called his office and they told me they haven't even filed the request, because the doctor hasn't dictated his report yet. Is that weird or what? 

 

FWIW, in our experience, things can move slowly.  It's hard to remember back that far, but we probably waited several days to get the MRI appointment, in that the ped sent an order over to the Children's hospital, which then calls to set up the appointment, so there's a lot of waiting around for the hospital scheduler to call.  The actual MRI took place within a few weeks, maybe a month, and we had the results the next day via a phone call from the ped who had already spoken with the pediatric neurosurgeon.  We saw the neurosurgeon a few weeks or a month after that and ds's surgery was another two months after we met the neurosurgeon.  So, maybe 4-5 months went by between the time the ped decided to order the MRI and the time of a "let's not wait long" surgery.

 

We also saw Genetics at our Children's Hospital twice, once after my ds had thrombocytopenia (somewhere in the time frame of the spinal cord stuff) and again later after it was discovered that he has hypertrophic cardiomyopathy due to a genetic defect and also a small VSD.  Genetics has six-month waits for appointments and both times they found nothing, and IMO they were kinda pathetic.  DS has several known defects now but we discovered them all without the help of the Genetics doc (heart, FVL, MTHFR and other stuff like VDR taq which has to do with vitamin D, COMT which has to do with liver metabolism, etc.).  FWIW, on our own we recently did the 23andme testing ($99) which is relatively anonymous and only provides the raw genetic data.  It took maybe 3 weeks to get results back from 23andme.  Now when I'm worried about a particular gene or set of genes, I look it up in SNPedia and try to figure it out myself (this is not easy but IME superior to, and far cheaper than, the Genetics department).  I'm glad to have the data file even though it's not officially interpreted at this point.  I was pleased to see that the genetic defects that were known prior did turn up in the results, so I feel they're pretty accurate.  ETA, I just paid five bucks to put the 23andme data through promethease.com for a report and I'm reading through that now.  *very* interesting stuff in light of his history.

[MyThreeSons]

My son had an "abnormal EKG", many outward signs of Marfan, and a family history of Marfan, and it still took 10 days to get his echocardiogram done and another 5 days to get the results.

Edited June 5, 2015 by MyThreeSons

[wapiti]

My son had an "abnormal EKG", many outward signs of Marfan, a family history of Marfan, and it still took 10 days to get his echocardiogram done and another 5 days to get the results.

 

Wow that's a long time!  Our local Children's cardiology dept is the only one that seems to move swiftly.  When our ped found a new murmur, we saw cardiology within a few days, and cardiology does both the EKG and echo on-site right then (they only did the echo after first seeing an abnormal EKG).  We didn't even see the cardiologist himself until after those tests were completed and he could tell us results, a little while later (long appt).  Now my ds sees a cardiomyopathy specialist, who I love.  Of all the docs we have seen, I feel that this particular doc and his assistant are the most careful and trustworthy, though that's an individual thing - I didn't like the first cardiologist (long story).

[Laura Corin]

Calvin was referred for possible Marfan's. The appointment with the specialist clinic took a couple of months to come through, but then all the testing was done on one intensive day. He was cleared.

 

Best of luck finding your way through this.

[Lovingparent]

 

 

I don't know if any of this is helpful in your situation, but thought I'd pass it along.

 

Thanks to everyone that has commented. Every little bit helps me. I hardly knew what scoliosis was before and I need all the information I can get to get us through. The information about Marfan's was very enlightening.  I had no idea that Marfan's existed before this week.

I am especially curious about core strengthening and physical therapy and chiropractors and any other alternative ways to correct it. We will get my son outfitted with a brace, but it would be nice to have other options too as the brace is not always successful. 

[Tiramisu]

With my second dd's spine issue. It was nearly a year of the ped telling us it was a pulled hamstring (her hamstrings had become very tight and sore). When her walk changed, I got her into an orthopedists where she was dx'd in 30 seconds. The MRI was a week later. We were referred to a pediatric spinal surgeon and had to wait two months for that, and that was with the orthopedist calling on our behalf. Otherwise it would have been twice as long. Surgery was six months later. We met with four orthopedic surgeons, two just to get advice, and two to choose from. I scheduled surgery with one and then cancelled when we found someone we liked better. I would have seen more but I was convinced after meeting the second that he was the one I wanted to do the surgery.

 

With my oldest's dd's problem. We saw an endo in the morning, had an MRI that afternoon and got the results within a week, but we still had to wait over a month for the neuro-endo.

[MyThreeSons]

Thanks to everyone that has commented. Every little bit helps me. I hardly knew what scoliosis was before and I need all the information I can get to get us through. The information about Marfan's was very enlightening.  I had no idea that Marfan's existed before this week.

I am especially curious about core strengthening and physical therapy and chiropractors and any other alternative ways to correct it. We will get my son outfitted with a brace, but it would be nice to have other options too as the brace is not always successful. 

 

Here's my scoliosis story:

 

Throughout my upper elementary and junior high school years, I had frequent bouts of bronchitis that developed into pneumonia. When the radiologist was reading the follow-up x-ray after one such episode, he noticed a curvature in my spine. He was able to go back and pull several other x-rays and see that the curve was indeed getting worse rather rapidly. He alerted the pediatrician, who called us in.

 

The pediatrician knew of an orthopedic surgeon in our town who was very well known for working with scoliosis. He had several patients who flew up from the southern California and even from other Western states to see him. Of course, that's who we wanted to see. When my Mom called to get an appointment, she was told that he was no longer accepting new patients. Not one to be deterred, my Mom asked if he would take a patient who was a family member of an existing patient. The nurse said that yes, he would. So my Mom told her that Dr. A had treated her for a broken ankle when she was a little girl -- like 30 years earlier. The nurse counted that, and I got in. 

 

I loved that Dr! He was such a kind, gentle man. At that time, bracing and / or surgery were the standard treatments for scoliosis. But Dr. A was a little ahead of his time, I guess. My treatment primarily consisted of Physical Therapy. Looking back, I think it was mainly what would be called core-strengthening exercises. I did wear a soft figure-eight brace that pulled my shoulders back to help with my kyphosis for a few years, but I never had any other brace or surgery. I do still have a mild curve, and occasional back pain, but nothing severe.