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Tethered Cord Syndrome in Children

WHAT YOU NEED TO KNOW:

What is tethered cord syndrome (TCS)?

TCS means your child's spinal cord is pulled down and tied (tethered) within his or her spinal column. The spinal cord normally moves freely within the spinal column. As your child grows, the tethered cord stretches. This can cause permanent nerve damage and loss of function.

Vertebral Column

What are the signs and symptoms of TCS?

  • Sores, patches of hair, dimples, skin discoloration, or a fatty mass on the lower back
  • Spinal column that is not shaped correctly, or scoliosis (curved spine) that gets worse
  • Weak, numb, or tingling leg muscles
  • Pain in the lower back that may spread to the legs (especially the backs of the legs)
  • Loss of bladder or bowel control that gets worse, or bladder infections that happen often
  • Muscle control problems in the legs
  • Spasms or contractions in the leg muscles
  • Changes in the feet, such as higher arches or curled toes, or leg deformities
  • Problems with walking that get worse
  • Tender spine

What increases my child's risk for TCS?

  • Low folic acid levels during pregnancy
  • Spina bifida
  • An injury to the spinal cord
  • Surgery on the spine
  • A split spinal cord
  • A lipoma (fatty mass), or a tumor
  • Thick or tight tissue near the tailbone

How is TCS diagnosed?

TCS may be diagnosed before or after your child is born. Depending on your child's age, his or her healthcare provider may ask when symptoms began. He or she may press or touch parts of your child's back or legs. He or she may also check your child's muscle strength and ability to move. Tell the provider about your child's medical history, including cancer, surgery, or injury in the spinal column. Contrast liquid may be used for some of the following tests. Tell the healthcare provider if your child has ever had an allergic reaction to contrast liquid.

  • An MRI may be used to find where your child's spinal cord is tethered. Do not let your child enter the MRI room with anything metal. Metal can cause serious injury. Tell the provider if your child has any metal in or on his or her body.
  • A myelogram is an x-ray of your child's spinal column. Contrast liquid is used to show how well the liquid flows around the spinal cord and nerves.
  • An ultrasound may be used to see the spinal cord as it moves in the spinal column.

How is TCS treated?

  • Prescription pain medicine may be given, depending on your child's age. Ask your child's healthcare provider how to give this medicine safely. Some prescription pain medicines contain acetaminophen. Do not give your child other medicines that contain acetaminophen without talking to a healthcare provider. Too much acetaminophen may cause liver damage. Prescription pain medicine may cause constipation. Ask your child's provider how to prevent or treat constipation.
  • Do not give aspirin to children under 18 years of age. Your child could develop Reye syndrome if he takes aspirin. Reye syndrome can cause life-threatening brain and liver damage. Check your child's medicine labels for aspirin, salicylates, or oil of wintergreen.
  • Surgery may be used to free your child's spinal cord. This may help with his or her pain or other symptoms.
  • Spinal cord nerves may be cut if your child cannot have surgery. This is done to help with pain.

What else do I need to know about TCS?

  • Folic acid taken during pregnancy can help prevent neural tube defects that lead to TCS. The neural tube develops into the spinal cord, brain, and spinal column. The neural tube normally closes within the first month of pregnancy, possibly before you know you are pregnant. If you are planning to get pregnant or are pregnant, get 400 to 800 micrograms (mcg) each day. Your healthcare provider may tell you to take up to 4,000 mcg of folic acid if you already had a child with a neural tube defect. You will probably need to take a supplement to get enough folic acid. Start taking the supplements at least 1 month before you get pregnant, if possible. Continue through the first 3 months of pregnancy, or as directed.
  • You may need to care for your child's bladder and bowels. TCS tends to get worse over time. Clean your baby's diaper area well to avoid infection or other health problems. Remind your older child to urinate or have bowel movements as soon as he or she feels the urge. You may also have to give your child an enema or stool softener so he can have regular bowel movements. This will help you predict and prepare for bowel movements.

When should I seek immediate care?

  • Your older child tells you he or she has severe pain.
  • Your baby cries constantly and cannot be consoled.
  • Your legs become so weak you cannot stand or walk.

When should I call my child's doctor?

  • Your child is becoming less able to move, crawl, or walk.
  • Your child has new or worsening back or leg pain.
  • Your child has new or worsening trouble urinating or having a bowel movement.
  • You have questions or concerns about your child's condition or care.

Care Agreement

You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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Further information

Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.