About 2 years ago I spent 2 hours every day for one month researching scoliosis. Scoliosis is a descriptive term used to define an abnormally curving and twisting spine. My daughter's back was twisting more and more and I wanted to know what I could do about it. The following, in a nutshell, is what I learned and what I did do and am doing about my daughter's scoliosis.
* Children like my daughter...wheelchair bound with neurological damage...have a 100% incidence of scoliosis. Scoliosis is worse in children who are spastic as opposed to children who lack tone, but this is not an indicator of the severity of the curvature itself.
* Doctors believe that the only treatment for scoliosis is surgery which involves the insertion of metal rods along either side of the spine to make it rigid and straight. (See You-Tube for horrifying details...(http://www.youtube.com/watch?v=cVbiz3GwwCw&feature=related)
* The reason scoliosis is treated is because the curvature can eventually affect cardio-pulmonary and digestive function.
* Scoliosis is not just a "sideways" bend, but also a "corkscrew" twist. The curvature, in other words, is three dimensional.
* The rib cage is directly affected in scoliosis. One side sticks out in a "hump" and the other becomes compressed. It also affects the hip alignment.
* Scoliosis causes muscle pain and spasm.
* Surgery performed on young children brings about the problem of growth and pain related to a fused spine. Because surgery treatsonly symptoms of scoliosis and not the actual cause, the twisting continues even after surgery. For children, this twisting against the metal rods is called the "crankshaft" effect. It is managed through muscle relaxants and pain killers. Doctors rarely inform parents that spinal surgery is usually repeated many times throughout life to address broken pins and rods and to re-correct the curvature. Statistically, even with surgery, the spine will return to its original curved position within 20 years.
I know of two different outcomes of scoliosis as it relates severely disabled children. S. is a girl who suffered asphyxiation at birth and was severely disabled thereafter. She could do absolutely nothing...no use of hands, no head or torso control, no use of legs. She could eat, however, and empty her bowels very well. She spent her life in a bed or a stroller, watching favourite T.V. shows, going for drives and walks with her parents. She never got to weigh much more than 35 lbs. She had severe scoliosis. Parents opted out of spinal surgery because it would have brought on more pain during recovery and for a lifetime after that than was of benefit to this child. Instead, she got regular chiropractic treatments. The only surgery performed was that of disconnecting her leg joint from the hip socket...they did it on both legs though the parents told me it was only needed on one side. This girl lived until she was 38 years old and was not on anytype of drug.
Little A. we knew very well because he was a "roomate" throughout our three month hospital stay. He also suffered from asphyxiation, though it happened when he was three years old. He was completely "locked in", no useof arms, legs, loss of swallow, j-tube, trach. By the time he was nine, his scoliosis was badenough to have caused his hip to dislocate...his hip touched his rib cage. They did spinal surgery on him. Within the year, his back began to curve again, against the rods. He is on copious amounts of medication.
In telling you about these two individuals I am not trying to say, "surgery bad", "no surgery good". I am saying that, as in case 1, the fear of scoliosis affecting cardio-pulmonary and digestive function is not necessarily well-founded. It also presents a far less intrusive way of dealing with the effect scoliosis has on hips. In case 2, I am trying to point out that surgery is not necessarily an answer to the problem of scoliosis, as doctors will try to tell you.
In my research I actively sought out alternative treatments to scoliosis. Alternatives came up only in relation to idiopathic scoliosis...the type that non-disabled people get. They involve yoga, Pilates, chiropractic...basically, physical therapy of some sort. I highly recommend the site "Alternative Therapies for Scoliosis Treatment" ( http://www.ctds.info/scoliosis-treatment.html ),
Since my daughter cannot stand up or even sit up without support, my next step was to figure out how to adapt those recommended scoliosis exercises to suit her. I found two wonderful yoga videos: Secrets to Feeling Better: Yoga Therapies for Seniors and the Physically Challenged with Mary Cavanaugh (this lady is in her 80's!). This one has a whole section devoted to doing yoga in bed. Second: Yoga for Scoliosis with Elise Browning Miller. She herself has scoliosis and the whole video is shot with people representing different types of curvature. Excellent. Both were purchased online. Then I purchased three books: Structural Yoga Therapy by Mukunda Stiles (Weiser Books, Boston, 2000), Back Care Basics by Mary Pullig Schatz, M.D. (Rodmell Press, Berkeley, Ca., 1992) and Relax and Renew by Judith Lasater, Ph.D., P.T. (Rodmell Press, Berkeley, Ca., 1995). The first two books have chapters on scoliosis and exercises for relief. I learned a great deal about the mechanics of scoliosis. The last book is the best for my daughter, however, because it uses bolsters and lots of supine exercises...lets the body relax into a position rather than the body needing to hold the position.
To make a very long story short, I came to the conclusion that to avoid surgery and to avoid young A.'s predicament (hip dislocation, eventual surgery and crankshaft effect), I had to keep my daughter's spine and hips as flexible as possible. That meant I had to stretch and move her, gently, in ways to maximize fluidity. I did it...twists in bed, on her side, in opposition to the curve, traction of upper and lower torso, hanging her legs off the edge of the bed (watching to make sure the lower back is supported) to keep the hips moving and in alignment. She also gets her legs and spine massaged daily with a penetrating oil and weekly chiropractic adjustments, shiatsu and cranial-sacral therapy. I exercise her myself twice daily, and once a day she gets the "big exercise" which consist of side stretches and twists on a stool,as shown in some of the pictures below.
The result of all this effort is that, though my daughter's scoliosis is severe, she is not locked...her spine moves and shifts, thus allowing the best possible nerve flow, under the circumstances. Her cardio-pulmonary function are good, her ability to clear her bowels, however, is definitely challenged by her posture, since the bowels and intestines are all shifted around. Growth spurts are a real challenge and bring about increased rigidity in the spine and so must be addressed gently but consistently in order to achieve results. I highly recommend daily exercise for your severely disabled child. Even if you do opt for surgery, you can put it off until your child's major growth spurts are complete, therefore avoiding the damaging effects of the crankshaft effect.
 Side twist to counter the scoliosis. Hips to one side, upper body the other.
 Twist to the right. Forward bend.In both pics, my hand is pushing up on the right side of her back where the "hump" is. I have my arm jammed into my thigh to support her...I am only 5' tall, and my daughter is almost as tall as I am...so I need the extra leverage.
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* Children like my daughter...wheelchair bound with neurological damage...have a 100% incidence of scoliosis. Scoliosis is worse in children who are spastic as opposed to children who lack tone, but this is not an indicator of the severity of the curvature itself.
* Doctors believe that the only treatment for scoliosis is surgery which involves the insertion of metal rods along either side of the spine to make it rigid and straight. (See You-Tube for horrifying details...(http://www.youtube.com/watch?v=cVbiz3GwwCw&feature=related)
* The reason scoliosis is treated is because the curvature can eventually affect cardio-pulmonary and digestive function.
* Scoliosis is not just a "sideways" bend, but also a "corkscrew" twist. The curvature, in other words, is three dimensional.
* The rib cage is directly affected in scoliosis. One side sticks out in a "hump" and the other becomes compressed. It also affects the hip alignment.
* Scoliosis causes muscle pain and spasm.
* Surgery performed on young children brings about the problem of growth and pain related to a fused spine. Because surgery treatsonly symptoms of scoliosis and not the actual cause, the twisting continues even after surgery. For children, this twisting against the metal rods is called the "crankshaft" effect. It is managed through muscle relaxants and pain killers. Doctors rarely inform parents that spinal surgery is usually repeated many times throughout life to address broken pins and rods and to re-correct the curvature. Statistically, even with surgery, the spine will return to its original curved position within 20 years.
I know of two different outcomes of scoliosis as it relates severely disabled children. S. is a girl who suffered asphyxiation at birth and was severely disabled thereafter. She could do absolutely nothing...no use of hands, no head or torso control, no use of legs. She could eat, however, and empty her bowels very well. She spent her life in a bed or a stroller, watching favourite T.V. shows, going for drives and walks with her parents. She never got to weigh much more than 35 lbs. She had severe scoliosis. Parents opted out of spinal surgery because it would have brought on more pain during recovery and for a lifetime after that than was of benefit to this child. Instead, she got regular chiropractic treatments. The only surgery performed was that of disconnecting her leg joint from the hip socket...they did it on both legs though the parents told me it was only needed on one side. This girl lived until she was 38 years old and was not on anytype of drug.
Little A. we knew very well because he was a "roomate" throughout our three month hospital stay. He also suffered from asphyxiation, though it happened when he was three years old. He was completely "locked in", no useof arms, legs, loss of swallow, j-tube, trach. By the time he was nine, his scoliosis was badenough to have caused his hip to dislocate...his hip touched his rib cage. They did spinal surgery on him. Within the year, his back began to curve again, against the rods. He is on copious amounts of medication.
In telling you about these two individuals I am not trying to say, "surgery bad", "no surgery good". I am saying that, as in case 1, the fear of scoliosis affecting cardio-pulmonary and digestive function is not necessarily well-founded. It also presents a far less intrusive way of dealing with the effect scoliosis has on hips. In case 2, I am trying to point out that surgery is not necessarily an answer to the problem of scoliosis, as doctors will try to tell you.
In my research I actively sought out alternative treatments to scoliosis. Alternatives came up only in relation to idiopathic scoliosis...the type that non-disabled people get. They involve yoga, Pilates, chiropractic...basically, physical therapy of some sort. I highly recommend the site "Alternative Therapies for Scoliosis Treatment" ( http://www.ctds.info/scoliosis-treatment.html ),
Since my daughter cannot stand up or even sit up without support, my next step was to figure out how to adapt those recommended scoliosis exercises to suit her. I found two wonderful yoga videos: Secrets to Feeling Better: Yoga Therapies for Seniors and the Physically Challenged with Mary Cavanaugh (this lady is in her 80's!). This one has a whole section devoted to doing yoga in bed. Second: Yoga for Scoliosis with Elise Browning Miller. She herself has scoliosis and the whole video is shot with people representing different types of curvature. Excellent. Both were purchased online. Then I purchased three books: Structural Yoga Therapy by Mukunda Stiles (Weiser Books, Boston, 2000), Back Care Basics by Mary Pullig Schatz, M.D. (Rodmell Press, Berkeley, Ca., 1992) and Relax and Renew by Judith Lasater, Ph.D., P.T. (Rodmell Press, Berkeley, Ca., 1995). The first two books have chapters on scoliosis and exercises for relief. I learned a great deal about the mechanics of scoliosis. The last book is the best for my daughter, however, because it uses bolsters and lots of supine exercises...lets the body relax into a position rather than the body needing to hold the position.
To make a very long story short, I came to the conclusion that to avoid surgery and to avoid young A.'s predicament (hip dislocation, eventual surgery and crankshaft effect), I had to keep my daughter's spine and hips as flexible as possible. That meant I had to stretch and move her, gently, in ways to maximize fluidity. I did it...twists in bed, on her side, in opposition to the curve, traction of upper and lower torso, hanging her legs off the edge of the bed (watching to make sure the lower back is supported) to keep the hips moving and in alignment. She also gets her legs and spine massaged daily with a penetrating oil and weekly chiropractic adjustments, shiatsu and cranial-sacral therapy. I exercise her myself twice daily, and once a day she gets the "big exercise" which consist of side stretches and twists on a stool,as shown in some of the pictures below.
The result of all this effort is that, though my daughter's scoliosis is severe, she is not locked...her spine moves and shifts, thus allowing the best possible nerve flow, under the circumstances. Her cardio-pulmonary function are good, her ability to clear her bowels, however, is definitely challenged by her posture, since the bowels and intestines are all shifted around. Growth spurts are a real challenge and bring about increased rigidity in the spine and so must be addressed gently but consistently in order to achieve results. I highly recommend daily exercise for your severely disabled child. Even if you do opt for surgery, you can put it off until your child's major growth spurts are complete, therefore avoiding the damaging effects of the crankshaft effect.
Side twist to counter the scoliosis. Hips to one side, upper body the other.