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Spinal Cord Injury (FAQ)

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Answers to questions families often have about caring for their child with spinal cord injury

What is a spinal cord injury and what causes it?

Spinal cord injuries occur from accidents and occasionally from inflammation (transverse myelitis, an immune condition that attacks the spinal cord). Resulting issues depend on the location and extent of the injury. In general, injuries to the lower spine cause problems with walking and bladder and bowel control whereas injury to the cervical spine are more likely to cause problems with breathing, arm movement, and leg movement.

What are the symptoms of a spinal cord injury?

The immediate focus after a spinal cord injury (SCI) is stabilization and recovery. A rehabilitation team is usually consulted early in the process while the child is still in the intensive care unit. The manifestations of spinal cord injury evolve over time. Initially, there is a period of spinal shock when the child is hypotonic with flaccid muscles and decreased or absent deep tendon reflexes below the level of injury. The second phase evolves over the next 1-12 weeks as reflexes return and spasticity results. New bowel and bladder problems may occur during this latter stage. Overlaid on this process is the possibility of some recovery, depending on the extent of the injury, after edema decreases and contusions resolve. [Wang: 2004]

How is it diagnosed?

If SCI is present or suspected, usually an MRI (magnetic resonance imaging) of the spine is performed.

What is the prognosis?

The prognosis will depend on the extent of the injury. Information from the clinical exam and the MRI may be helpful in prognosticating the eventual ability to recover some function. Injuries that sever the spinal cord won't show any recovery under current medical care, although, there are stem cell trials underway. In injuries where the cord isn't severed, there is a possibility of some recovery as swelling and hemorrhage, from the affected area, resolve.

What is the risk for other family members or future babies?

There is no genetic component and no risk to other family members or future babies.

What treatments/therapies/medications are recommended or available?

If your child has a spinal cord injury, he or she will likely be in an intensive care unit where therapies will begin. Then, as the child begins to recover, he or she will often go to a rehabilitation center for therapies to continue. Depending on the extent of the injury, regaining mobility will be a focus, whether it is independently, or with support by a walker, crutches, or wheelchair. Alternate ways of achieving bowel and bladder continence may need to be taught. To avoid skin breakdown, individuals are taught to avoid staying in one position without moving. Breathing problems may be an issue. Stem cell therapies and other experimental trials are underway to help gain more recovery of function after a spinal cord injury. See Trials info (SCI info pages).

How will my child and our family be impacted?

The impact on your child and family will depend on the extent and location of the injury but will most likely require many changes in the life of the family. Many individuals with spinal cord injury lose their ability to walk independently and may need a wheelchair or other equipment for mobility. Adjusting to the injury and to how life has changed can be very difficult for the injured person and their family. Depression is common initially and caregivers should watch for signs of depression. (See Depression (FAQ).) Support groups for both the child/adolescent and the family may be helpful for emotional support and information regarding accommodations that may need to be made. These are often available associated with your local hospital or rehabilitation center.

What can make it easier for teens with spinal cord injuries to deal with friends and family?

Let people know that you are still the same person, only now you are dealing with a medical problem. You can tell them that everyone has a medical problem at some point in their lives and that you are dealing with yours early in life.

How do I know when my child can self-catherize?

The ability to self-catheterize depends on the type of spinal cord injury, the degree of physical impairment, and the developmental level of the child. A rule of thumb is that a child with the approximate level of a 5-year-old can learn independent cathing techniques. An occupational therapist can help you decide whether your child is ready by testing fine motor abilities and the child's understanding and ability to follow directions. If the child seems ready, he or she will be shown how to self-cath and then demonstrate their abilities. Sometimes the process takes months to master; but when mastered, it increases the independence of the child.

What should I tell my child with a SCI when she asks if she can have a child?

Generally, women who have had SCIs are able to become pregnant and have children, although they will usually require additional medical surveillance during the process. You can reassure her, however, and then provide details that are developmentally appropriate if necessary.

My child had a SCI two years ago and is doing well. Does he still have a shortened life expectancy?

Life expectancy of children following SCI depends on the level of injury and associated conditions. For instance, children who have had cervical injuries and are ventilator dependent are more likely to develop respiratory infections such as pneumonia, which may lead to a shortened life expectancy. Untreated urinary tract infections and skin ulcers can also lead to a shortened life expectancy. If your child does not have these complications, life expectancy should be approximately normal, although there is no scientific data in this regard. You and your child, as he or she gets older and it is developmentally appropriate to involve him/her in self-care, should monitor for possible complications.

Resources

Information & Support

Related Portal Content
Spinal Cord Injury
Assessment and management information for the primary care clinician caring for the child with spinal cord injury.

Care Notebook
Medical information in one place with fillable templates to help both families and providers. Choose only the pages needed to keep track of the current health care summary, care team, care plan, health coverage, expenses, scheduling, and legal documents. Available in English and Spanish.

For Parents and Patients

Support

United Spinal Association
A products & services directory with reviews.

General

Problems that May Occur with SCI (SCI Information Network)
Information on bone health, bowel and bladder management, sexuality, pain, pressure sores, spasticity, respiratory problems, and cardiovascular health. Although these are geared towards adults, they are detailed and informative.

Spinal Cord Injuries (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

American Spinal Injury Association (ASIA)
Promotes standards of excellence, educates professionals and families, and facilitates research. Includes conference announcements, publications, and research information.

Reeve Foundation
Dedicated to curing spinal cord injury by funding innovative research; provides grants, information, advocacy, and referral service.

EP Magazine (Exceptional Parent)
A monthly publication that provides practical advice, emotional support, and up-to-date educational information for people with disabilities.

Pressure Ulcer Resource Guide
Information for families and caregivers about pressure ulcer types, causes, treatments, preventions, and remedies.

Patient Education

Going Back to School After a Disability (NSCIA)
Resources and support for returning to school after SCI; National Spinal Cord Injury Association.

Autonomic Dysreflexia (UAB) (PDF Document 277 KB)
A 5-page pdf with information for patients and families about warning signs, symptoms, importance of blood pressure measurements, triggers, and treatments; University of Alabama at Birmingham.

Services for Patients & Families in Rhode Island (RI)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Studies

Spinal Cord Injuries Clinical Trials (CenterWatch)
Lists trials by state.

Authors & Reviewers

Initial publication: October 2012; last update/revision: January 2016
Current Authors and Reviewers:
Author: Lynne M. Kerr, MD, PhD
Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.

Page Bibliography

Wang MY, Hoh DJ, Leary SP, Griffith P, McComb JG.
High rates of neurological improvement following severe traumatic pediatric spinal cord injury.
Spine. 2004;29(13):1493-7; discussion E266. PubMed abstract