Early onset scoliosis

Early onset scoliosis is the abnormal lateral curvature of the spine that occurs in children.

Early onset scoliosis

A comprehensive guide

Early-onset scoliosis is when a curve appears in a child’s spine after birth but before the age of around 10. Much like other forms of scoliosis it is usually idiopathic, which means that there is no-known cause.

In some cases, the spinal curves from early-onset scoliosis can self-correct without treatment. Larger curves, or a curve that continues to grow, may require a child to have further treatment.

It is also possible that a child has congenital scoliosis that has only been noticed once they have become an older child. Children with early-onset or congenital scoliosis need to stay under the care of a scoliosis specialist as they grow. If you are looking for your nearest specialist, contact SSR.

How will my child’s early-onset scoliosis be diagnosed?

Parents or carers are often the first to notice that their child may have early-onset scoliosis. Many children with early-onset scoliosis are otherwise healthy and able to live comfortably with a small curvature in their spine. Other children may need treatment to manage the condition.

What signs of early-onset scoliosis should I look out for?

  • The child’s rib cage may stick out on one side, especially at the back
  • The child may have uneven shoulders, or one shoulder blade may stick out more than the other
  • The child’s hip/waist may stick out
  • As the child becomes old enough to walk, they may lean to one side
  • The child’s head may tilt over to the side
  • The child’s clothing may not fit as well as they used to
  • The child may not be able to stand up straight
  • The child may be in regular physical pain or discomfort

If you think your child may have scoliosis, make an appointment with their doctor as soon as possible. It is best to treat a child’s scoliosis as soon as possible.

How do I check for signs of scoliosis in my older child?

One of the best ways to check for signs of scoliosis in older children is to take the ‘Adam’s Forward Bend’ test. This test can be undertaken with a doctor or parent/guardian present and, although this is not a formal diagnosis, the findings can put you on the right path to receiving specialist support.

Adam’s Forward Bend Test

  • The child’s back will need to be uncovered so that their shoulders and spine are visible.
  • The child should bend forward from the waist whilst keeping their legs and arms straight.
  • If scoliosis is present, you may be able to see a bulge in the ribs area on their back.
  • If a curve is noticed your GP will give a referral to see a scoliosis specialist.

What will happen when we meet a scoliosis specialist?

Your doctor will organise a consultation with a scoliosis specialist. At the first consultation it is likely that the child will be examined by X-ray to help measure the size of the curve. You will then be informed of the Cobb angle, which is the name given to the exact degree of the curve.

Monitoring

A specialist will monitor your child’s spine over a period of time and assess if the curve is becoming larger. The curve in some children’s spines will not get bigger, whilst other children will have a curve that continues to grow. Normally, the specialist will take, update, and compare the child’s X-rays at each consultation. Some children will not need treatment, particularly if the curve straightens itself naturally, and when this occurs, the child will continue to be monitored by a specialist until the curve has straightened. Other children will need one or more treatments such as casting, bracing or surgery.

Casting

A helpful treatment for some children is ‘casting’. Casts help the spine to straighten.
The cast guides the child’s spine into a normal position as they grow, is modelled from light materials and is worn constantly. The cast starts from the underarms and covers the top half of the body. Casts have a distinctive hole in the chest area, which allows the lungs to expand so that the child can breathe properly. As the child grows, the cast is changed regularly. As children under 2 years old grow more rapidly the cast will be changed more often, for instance, every 2-3 months. Many parents find it easier for their child to wear a cast instead of wearing a removable brace.

Bracing

If the curve of your child’s spine increases as they grow, the specialist may advise bracing. Bracing prevents the spine from curving any further.

A brace is often made from a lightweight plastic and should usually be worn for 23 hours a day. A brace can mean that the child can keep growing for longer whilst preventing the curve from worsening. The brace can be used to control the condition while a more permanent treatment, such as surgery, can be considered. As the child grows, new braces will need to be made.

Surgery

If a cast or brace is unable to stop your child’s curve getting bigger your child may need to have an operation. A common operation for children involves attaching growing rods to the spine which help guide the child’s growing spine into place. Because the rods are attached to the spine they can reduce the curve by up to half the size when first fitted. After the rods have been fitted the child will return to their treatment centre every 4-6 months for minor adjustments that match the rate of growth of the child’s spine.

An alternative method is the use of magnetic rods which require an initial operation to fit but no further surgery is needed to lengthen them as the child grows. Occasionally, the process of adjusting the rods, done via magnets, can cause minor discomfort.

Most children will also wear a brace, to protect their growing rods.

Once the child’s spine is fully grown the rods can be removed and they will usually undergo a final operation, known as a spinal fusion.

How will early-onset scoliosis affect my child?

Living with scoliosis, or wearing a cast or brace, should not stop most children and young people from enjoying a normal childhood. Early treatment can ensure the condition is managed carefully and the impact of the condition can be lessened.

If you need help or advice please call our Helpline on 020 8964 1166 or email info@ssr.org.uk.

Frequently asked questions

Below is a selection of common questions we are asked by callers on our Helpline.
What is scoliosis?

Scoliosis is a sideways curvature of the spine. Early-onset scoliosis is scoliosis that occurs in a child between birth and 10 years of age.

Towards the lower end of the age range, boys tend to be affected more than girls and the curve is most often left-sided. Towards the upper end of the age range, the condition is more like late-onset (adolescent) scoliosis, affecting more girls and mostly right-sided curves.

This is a difficult question to answer. In most cases the cause of scoliosis is idiopathic, meaning that there is no known cause. In some cases it does seem to run in families, with around a quarter of people with scoliosis having a close relative with a curvature.

If your child is diagnosed with scoliosis it is important that they are referred to a scoliosis specialist. There are around 30 scoliosis centres across the UK and you can find your nearest specialist by calling or emailing SSR. You will need to ask your GP for a referral.

At your child’s first consultation with a specialist they will be examined, X-rays will be taken, and you will be told the Cobb angle. The Cobb angle is measured in degrees and will tell you the size of the curve.

The specialist will then discuss possible treatment pathways with you. For smaller curves, the specialist will monitor your child regularly by assessing the size of the curve. However, sometimes the spine will naturally straighten.

For larger curves, it is likely that treatment will be recommended. It is important to remember that every scoliosis is unique and there is no standard treatment, so seeking the advice of a specialist is vital.

Each case of scoliosis is different, so treatment pathways will vary.

Some hospitals use plaster casts in a process known as ‘casting’ to guide the spine into its normal position as the child grows. Sometimes the specialist might try putting the child in a brace. If these non-operative treatments are ineffective, surgery may be recommended.

Younger children – generally those under 10 – can have an operation to insert growing rods to their spine. These rods will control the curve and allow the spine and the trunk (middle part of the body) to grow. The rods can be lengthened by making a small incision in the back, allowing space for adjustments to be made.

There is also a type of rod that can be attached and lengthened without regular surgery, known as magnetic rods. An initial operation is needed to fit the magnetic rods, but further surgery would not be needed to lengthen them. They are instead lengthened by a magnet in a short, painless process which does not require the child to be under local anaesthetic. Your specialist will be able to provide in-depth information of this treatment.

When a child stops growing, the rods can be removed and a final operation to straighten their spine may be carried out. This is known as a spinal fusion surgery, and given to teenagers and young adults. Your specialist will provide you with more information about the management plan for your child’s scoliosis.

In around 80% of cases of scoliosis cases, the cause is unknown. Scoliosis can only be prevented when it is due to rickets or poliomyelitis, both of which are treatable diseases and thankfully, rare. Scoliosis is not believed to be caused by bad posture, diet, poor exercise techniques, or lack of exercise.

Living with scoliosis should not stop most children and young people from taking part in sport. If the child or young person is not in pain, they can often continue with their regular sporting activities. If you are feeling unsure, consult your specialist. This is particularly important in the case of more physically demanding sports, such as rugby or horse riding.

Generally, taking part physical activity through sports will help children with scoliosis by improving muscle strength and may help reduce any back pain.

Wearing a brace should not stop a child from being active, too. If surgery is needed, patients should slowly ease back into gentle exercise. Many child and young people will feel comfortable in returning to regular sporting activity around 6 months after surgery. For high impact exercise and contact sports, this can take longer.

Please note that every case is different. If you are feeling unsure, consult your scoliosis specialist.

It is normal to feel unsure about which course of treatment to choose for your child. There is a lot of information to take in and some of the common questions asked about scoliosis have no clear answer.

Your specialist can help you with medical advice; ask questions, gather secondary opinions from other specialists, or find out more on the NHS website. To find more specialists, call the SSR Helpline. or email our team on info@ssr.org.uk

You may also find that it helps to talk through your specialist’s advice with someone. SSR are here to listen and offer support. Please note that our team are not trained to give medical advice.

Although it might not feel like it, you are not alone. If you would like to speak to other people living with or affected by scoliosis, join SSR.

If you would like to talk further about any aspect of scoliosis, SSR is here to help. If you need help or advice please call our Helpline on 020 8964 1166 or e-mail: info@ssr.org.uk.

Support

Whether you want general guidance or advice or just to talk things through; our team are here to help.

View support
Research

We fund three types of research grants for work in scoliosis and other spinal conditions.

View research
wave shape
mobile close icon