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What is scoliosis ?


Scoliosis is not a disease, but rather a word describing a condition of the spine (also called a backbone) when very curved. Some curves are normal in the spine. Some places we all usually have curves are in the neck, in the upper back and in the lower back. We need these spinal curves to help the upper body maintain proper balance. Curves in the spine to the left or right are not normal, and are called scoliosis.

A child can be born with scoliosis. A child can develop the lateral curves gradually over childhood. We don't know what causes most cases of scoliosis. The curvature of the spine from scoliosis may develop as a single curve like the letter C or as two curves shaped like the letter S.


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What are some signs of scoliosis I may see in my child?


Most parents first notice that their child has a crooked back or the body looks asymmetrical (one side looks higher than the other or the child looks tilted). Things to watch for:
  • Walks with the head tilted.
  • Shoulder blade (a bone in the back) sticks out.
  • A tilted hip bone or one hip or shoulder higher than the other.
  • Leans to one side when standing or walking.



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What can I do to help my child?


You have made an important first step by reading more information on scoliosis. You also can talk with other parents of children with scoliosis. They have gone through what you are going through and may be able to help. You also can get great help from parent support and advocacy groups such as Parent to Parent of Miami. Research tells us that the earlier we begin to help children, the better the results for the child.



Below are some checklists to help your child.

CHECKLISTS OF THINGS I CAN DO TO HELP MY CHILD

 Getting Started:

Get your child's tested for scoliosis: You should have your child tested for scoliosis if you see any warning signs. Monitor the situation to make sure your child's scoliosis doesn't worsen over time. You also may need to see specialists to help your child. (See the section on Professionals for a complete list.)

IN THE STATE OF FLORIDA:
 Contact Children's Medical Services (CMS): for medical care for your child:



 Work with my child's service providers: A service provider is anyone who works with you and your child, such as a pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. Remember you know more about your child than anyone else and are the main influence in your child's life. Service providers are there to help you and your child. Here are some tips for speaking with service providers:
  • Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don't understand.

  • If you think your child needs something in particular (like occupational or physical therapy), keep asking until you get it or until you understand why it is not needed.

  • Your child may need a Section 504 educational plan to make sure your child's educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973. This federal law allows qualified children with a disability to have special services or supports in their schools. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html
 Get more information: Visit more websites. Read a book. Watch a video on scoliosis. Include your child and family. Talk to another parent. Parent to Parent of Miami can help you meet other parents and get services.





 Be a good listener: Encourage your child to talk about feelings. Listen carefully when your child is talking. Acknowledge feelings as real.

 Talk with my child's teacher: Teach your child's teacher about your child's scoliosis, and help the teacher to understand what can be done to help your child. Talk with the teacher often about how your child is doing at school. Work with the teacher to help your child be successful.

 Ask my child's teacher to:
  • Watch for and learn the signs of pain and tiredness in my child.
  • Offer breaks when needed.
  • Adjust the child's schedule if needed.
 If my child has surgery and is out of school for awhile, make a plan with the teacher for going back to school: Preparing your child and classmates will make coming back to school easier and more fun for your child. Children may be behind in school work. They may be anxious about how other children will look at them and treat them. Talk with the teacher about how to make this easier for your child. Some things you might do are:
  • Talk with the teacher often about schoolwork and homework.
  • Use a notebook or e mail to get your child's school assignments so they can be done at home or in the hospital.
  • Ask your child's teacher to tell the class about what your child has just experienced and what can be done to help your child be safe.
  • Ask your child's teacher to let your child tell the class about the condition.


 Make sure my child has a trusted adult with whom to talk: Sometimes children talk more easily with adults who are not their parents. Usually it is because they do not want to worry their parents. Children need an adult with whom to talk freely. A therapist, a psychologist or a teacher can often have a conversation with your child that he or she may not share with you.

 Include my child in all parts of daily life: Encourage your child to take part in family fun, recreation activities and play that can be done safely. Laughing, running, chattering are all fun and good. Talk with your children all day long about whatever you are doing even before they learn to talk.

 If my child is an infant, I will learn how to do infant massage: This powerful way to connect with your baby and a soothing activity for both of you also will show your baby that life can feel good and not always be uncomfortable or "medical."


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What are some other ways to describe scoliosis?


You may hear the terms below from your doctor or others:

The most common form of scoliosis is idiopathic scoliosis, which means the cause is unknown. About 80% of children with idiopathic scoliosis cases have adolescent idiopathic scoliosis. This scoliosis develops in young adults around the time of puberty.

There are four different kinds of idiopathic scoliosis, based on the age of the child when it becomes noticeable:
  • Infantile seen in children ages from birth to age 3.
  • Juvenile seen in children 3-9.
  • Adolescent seen in older children 10-14, around the time they start puberty.
  • Adult after the body stops growing.
Scoliosis can occur in the upper back (called thoracic) or lower (called lumbar), but usually develops in between.

Fletcher-Janzen & Reynolds, 2003, Scoliosis.com


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Do many children have scoliosis?


Experts say 3 of every 100 people have scoliosis to some degree. Less than 1 percent need any medical help. Of every 1,000 children, 3 to 5 develop spinal curves large enough to need treatment.

Scoliosis affects 500,000 teenagers in the United States. Scoliosis appears most often about age 10-13, when a growth spurt is occurring. Scoliosis in infants and children under 3 years old is very rare.

Since scoliosis can run in families, a child with a parent, brother or sister with scoliosis should be checked regularly for scoliosis by the family physician.

Fletcher-Janzen & Reynolds 2003



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Is there a cure or treatment for scoliosis?


Some choices for treating and curing scoliosis considered by both you and the doctor:

Bracing (using a back brace), or surgery: Back braces prevent any more curving of the spine in children with more serious curves of the spine. Doctors measure the curves. Children with curves in the range of 25 to 40 degrees are considered serious. If these children have not finished growing, then bracing is usually chosen. Parents should understand that bracing is not meant to make the curves smaller or to make them go away, but rather to prevent the curves from worsening.

Surgery is used for severe scoliosis (curves greater than 45 degrees) and where curves cannot be affected by bracing. The two primary goals for surgery are (1) to stop a curve from worsening once a child becomes an adult, and (2) to make the curves smaller. For surgery, some important things to know are:
  • The hospital stay is usually 4 to 7 days.
  • The child can start to move around about 2-3 days after the surgery.
  • Children usually return to school 2 to 4 weeks after surgery.
  • Your child should limit activity while the bone is fusing (growing together).
  • Bending, lifting and twisting should be avoided for the first three months after surgery.
  • Some children may need a back brace following the surgery.
  • Your child should avoid any rough play for 6 to 12 months after surgery.
  • Generally your child will have doctor appointments often and x-rays for a year or two after the surgery. Once the bone is solidly grown together, no further treatment is required.
A child before surgery, with a 70-degree curvature of the spine.   The same child after surgery. Curve of the spine is 17 degrees. To read this child's story, click here.



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What does scoliosis mean for my child’s intelligence and learning?


Scoliosis does not directly affect children's ability to learn or the way they learn, but it does affect the quality of their lives and, hence, can affect schoolwork. Children with severe scoliosis or who have gotten it as a baby (0-3) can have pain, be less able to breathe normally, and limited in what they can do physically. All of these things work to lower self-esteem and affect emotional health. Parents and caring adults can help by being good listeners and helping a child deal with the pain and tiredness. Teachers can change school schedules and schoolwork assignments. Some children need occupational therapy and or physical therapy at school.

National Scoliosis Foundation


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Who are some professionals my child may need to see?


Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word "pediatric" in front of a professional's title means he or she works with children.

Pediatric orthopedist: A doctor who specializing in treating children with conditions and disease of the bones, muscles and joints.

Pediatric orthopedic surgeon: A doctor specializing in operating on children with conditions and diseases of the bones, muscles and joints.

Orthopedic nurse: A nurse with special training to help a doctor to treat children with diseases and conditions of the bones and joints.

Pediatric physical therapist: A trained professional who uses exercises and movement to help children increase their joint flexibility and muscle strength.

Pediatric occupational therapist: A professional trained to help children with joint and muscle conditions. An occupational therapist will help figure out how the condition affects daily living and then suggest exercises, equipment and/or assistive devices.

Pediatric psychologist: A professional specializing in evaluating and treating emotional and behavioral problems and disorders in children. Psychologists also can provide psychological testing and assessments. A pediatric psychologist can do counseling and can be the trusted adult if your child needs one.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.

Assistive technology specialist: A person who works with individuals with disabilities to provide assistive technology solutions to help with problem areas. Assistive technology or assistive devices help a person with a disability with daily living tasks such as eating, speaking, getting around, working, playing. Some services and assistive devices may be covered under Medicaid.


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What are some websites where I can read more about scoliosis?


iScoliosis.com http://www.iscoliosis.com/ Site about scoliosis for children.

Scoliosis Research Society http://www.srs.org/ This is the website for the Scoliosis Research Society, a non-profit organization dedicated to education, research and treatment of spinal deformity.

National Scoliosis Foundation http://www.scoliosis.org/

Mayo Clinic http://www.mayoclinic.com/health/scoliosis/DS00194 Overview of scoliosis.

NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/scoliosis.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.

Bandaids and Blackboard A great site for kids, teens and parents of children with medical challenges. http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html

KidsHealth http://www.kidshealth.org/kid/health_problems/bone/scolio.html A great site for children and teenagers to better understand their disease.


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What are some special books I can read to my child?


There's an "S" on My Back: "S" Is for Scoliosis by Mary Mahony. This book will go a long way toward showing any child faced with wearing a new scoliosis brace what it's like to have scoliosis and what to expect. Told in the first person from a fifth-grade girl's point of view, the book takes you through the process from diagnosis to treatment.

Stand Tall, Harry (Paperback) by Mary Mahony, Susan Pasternack (Editor), Catherine Larkin (Illustrator). This is recommended for young readers ages 9-13.




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