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Spinal Cord Injury

Overview

Spinal cord injury (SCI) may result directly from injury to the cord (e.g., from birth injury, falls, motor vehicle accidents, non-accidental shaking, or diving and trampoline accidents) or indirectly from disease of the surrounding bones, tissues, or blood vessels. SCI can also occur in the setting of autoimmune demyelination (e.g., transverse myelitis, neuromyelitis optica, or other autoimmune myelopathies). [Cree: 2014] Most injuries occur at the C1-C3 levels in children younger than 8 years. [Eric: 2006] The more elastic intervertebral ligaments and more horizontally aligned facet joints in young children predispose them to subluxation of the cervical spine without bony injury. Immature neck muscles and a proportionally large head further compound this effect.

Multi-system trauma, such as head injury, fractures of pelvis and long bones, and visceral injuries, often accompanies SCI. The acute period of spinal shock, manifested by hypotonia, flaccid muscles, and decreased or absent deep tendon reflexes below the level of injury, is followed over the next 1-12 weeks by the return of reflexes and development of spasticity. New bowel and bladder problems may occur during this phase. Overlaid on this process is the possibility of some recovery, depending on the extent of the injury. [Wang: 2004] The manifestations of SCI evolve over time, requiring the medical home and collaborating specialists, particularly physiatrists and the rehabilitation team, to adjust their approaches periodically to optimize a child's function and outcome.

Other Names & Coding

Cervical/Thoracic/Lumbar/Sacral spine injury
ICD-10 coding

S12.x, fracture of the cervical vertebra and other parts of the neck

ICD-10 Coding Reference for Injury of Nerves and Spinal Cord at Thorax Level provides the additional digits needed to code for specific type and location of injury.

Prevalence

SCI in children is rare, accounting for approximately 5% of all SCI. The incidence of new SCI in children in the United States is 1.99 per 100,000 per year. [Vitale: 2006]

Genetics

There is no genetic component to traumatic SCI. Although heavily suspected, the genetic aspects of autoimmune-related SCI have not yet been determined.

Prognosis

Prognosis depends on the injury level within the spinal cord, the mechanism and severity of injury, and associated complications. Children are more likely than adults to show some neurological improvement than those in adults. [Wang: 2004]

Practice Guidelines

The American Spinal Injury Association (ASIA) is currently establishing evidence-based practice guidelines for rehabilitation of children and adolescents with SCI. [American: 2014]

Rozzelle CJ, Aarabi B, Dhall SS, Gelb DE, Hurlbert RJ, Ryken TC, Theodore N, Walters BC, Hadley MN.
Management of pediatric cervical spine and spinal cord injuries. In: Guidelines for the management of acute cervical spine and spinal cord injuries.
Neurosurgery. 2013;72 Suppl 2:205-26. PubMed abstract

Calhoun CL, Schottler J, Vogel LC.
Recommendations for mobility in children with spinal cord injury.
Top Spinal Cord Inj Rehabil. 2013;19(2):142-51. PubMed abstract / Full Text

Roles of the Medical Home

The medical home can:
  • Schedule frequent health maintenance and/or chronic condition management visits to monitor for complications, build a strong partnership with the family, and remain aware of possible new issues.
  • Ensure that the family has access to reliable, family-focused information about SCI and relevant community services and resources.
  • Facilitate access to other health professionals, coordinate the care that they provide, and interpret the information and advice they offer.
  • Guide the family in working with preschool and school systems to ensure appropriate accommodations. This assumes even greater importance if a brain injury accompanies the SCI. (The Medical Home Portal's Traumatic Brain Injury module contains assessment and management information for this condition.)
  • Facilitate access to private providers if the child needs services such as PT and OT and is not getting adequate services within the school system.
  • Assess parental stress and social supports during each visit to the medical home.
  • Help the child and family to accept diagnosis, adapt to the injury, optimize remaining function, and allow for the best future life.
  • Evaluate for depression or other mental health issues.

Issues and complications to be watched for and managed in the medical home include:
  • Autonomic dysreflexia - which can be a true medical emergency
  • Decubitus ulcers
  • Muscle atrophy and joint contractures, scoliosis, spasticity
  • Neurogenic bowel and bladder
  • Pulmonary complications
  • Adjustment problems, behavior problems, depression
  • Heterotopic ossification
  • Sexuality and reproduction issues
  • Depression
  • Scoliosis
  • Hip instability
  • DVT/PE
The Medical Home Questionnaire for SCI (MHP) (PDF Document 51 KB) may be helpful in assessing patients with SCI.

Clinical Assessment

Overview

Understanding the nature of the SCI, its likely impact on function, and the potential complications and sequelae are important. The immediate focus after injury 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 SCI 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] This evolution will continue after the child leaves rehabilitation for care in a medical home. Ongoing programs for the major care areas (respiratory, muscle/bone/joint care, decubitus prevention, bowel and bladder management) will be needed. See Medical Home Questionnaire for SCI (MHP) (PDF Document 51 KB) for history and physical exam items to consider in the ongoing care of a child with an SCI.

Pearls & Alerts for Assessment

Autonomic dysreflexia = medical emergency

Autonomic dysreflexia can be life threatening. It occurs in about half of children with SCI above T6, although it is rarely seen in children younger than 5 years. It is caused by an exaggerated response of the autonomic nervous system to irritation of the skin (tight clothing bands, sunburn, ingrown toenail, etc.) or bowel or bladder issues (overfull bladder, fecal impaction, etc.), which lea to release of norepinephrine and subsequent increase in blood pressure, changes in heart rate, GI symptoms (e.g., nausea), sweating, anxiety, and goose-bumps below the level of the lesion. The increase in blood pressure can be life threatening, as it may lead to seizures or other cerebral manifestations.

Inquire about chronic pain

Chronic pain is described in up to 65% of children with SCI [Jan: 2004]; inquire about pain at visits.

Heterotopic ossification

Heterotopic ossification involves abnormal deposition of bone into muscles and tendons, or into joints. It usually occurs within the first year after an SCI. It is uncommon in children, but frequency increases in adolescents. Symptoms of heterotopic ossification include erythema, pain, swelling over a joint, and restricted range of motion. Failure to detect and treat this process can lead to permanent loss of joint motion.

Screening

For the Condition

Traumatic SCI should be highly suspected in the presence of abnormal neck or neurological exam, a high-risk mechanism of injury, or a distracting injury even in the absence of radiological anomaly. [Parent: 2011] Consider screening special populations at risk, which include patients with trisomy 21, JRA, skeletal dysplasias, and those with tumors, infection, or arteriovenous malformation (AVM).

For Complications

Consider screening for depression, diabetes, obesity, scoliosis, bowel/bladder dysfunction, decubitus ulcers, and chronic pain.

Presentations

The signs of SCI will depend on where in the spinal cord the injury occurred. Partial injuries to the spinal cord are as likely as complete injuries, which may involve unusual patterns of motor and sensory loss. Examples of unusual patterns of motor and sensory loss include Brown-Sequard syndrome, with unilateral muscle weakness and contralateral sensory loss, and central cord syndrome, which involves the upper extremities more than the lower extremities. (Paraplegia involves paralysis of the legs and lower body; quadriplegia, or tetraplegia, involves paralysis of all four limbs.) Cervical cord lesions may also cause bilateral Horner's syndrome, due to sympathetic nervous system involvement, and additional problems with autonomic system function. Loss of sphincter control for bowel and bladder are associated with injury at all cord levels.

Children are more likely to present with SCIWORA (spinal cord injury without radiographic abnormalities), a condition where the spinal cord MRI shows significant damage but plain radiographs show no injury to bony structures. This type of injury, presumably indirect and usually ligamentous in nature, is seen in approximately one third of spinal cord injuries in children 0-5 years. The proportion decreases dramatically in the higher age groups. [Buldini: 2006] Because late and recurrent neurological deficits have been described after SCIWORA, follow-up spine MRIs are indicated. [Launay: 2005]

ADL Needs by SCI Level (PDF Document 65 KB) provides an overview of the impact of various levels of injury on activities of daily living.

Clinical Classification

The ASIA Impairment Scale (AIS) is used to categorize the degrees of injury:
A: Complete: no motor or sensory function is preserved below the level of injury, including the sacral segments S4-S5
B: Incomplete: sensory, but not motor, function is preserved below the neurologic level and some sensation in the sacral segments S4-S5
C: Incomplete: motor function is preserved below the neurologic level, however, more than half of key muscles below the neurologic level have a muscle grade less than 3 (i.e., not strong enough to move against gravity)
D: Incomplete: motor function is preserved below the neurologic level, and at least half of key muscles below the neurologic level have a muscle grade of 3 or more (i.e., joints can be moved against gravity)
E: Normal: motor and sensory functions are normal.

International Standards for Neurological Classification of Spinal Cord Injury Worksheet (ASIA) (PDF Document 637 KB) provides a two-page classification worksheet.

Medical Conditions Causing Condition

SCI can occur in the setting of transverse myelitis due to para-infectious or autoimmune mediated spinal cord inflammation, secondary to tumor-related mass effect and following disruption of its vascular supply (i.e., cord ischemia or infarction). See Evidence-based guideline: Clinical evaluation and treatment of transverse myelitis (American Academy of Neurology) for an abstract with recommendations.

Comorbid & Secondary Conditions

  • Traumatic Brain Injury (depending on method of injury)
  • Orthopedic and/or dermatologic issues
  • Bowel/bladder issues
  • Depression
  • Chronic pain
  • Pressure ulcers

History & Examination

Current & Past Medical History

Review details of the child's treatment program and assess for any needed changes. The plan will likely address pulmonary problems, bladder program, bowel program, therapy schedule, dietary issues, pain management, bone/joint/muscle health (spasticity, contractures), and decubitus ulcers. Determine the level of injury of the spinal cord and major problems experienced during the hospitalization. Ask about:
  • Changes in breathing, mobility, bladder and bowel, skin, intercurrent illnesses
  • Medications such as baclofen for spasticity or antibiotics for infection, and any side effects
  • Neuropathic and other pain
  • Difficulty adjusting, symptoms of depression
  • The frequency of autonomic dysreflexia episodes and what triggers them for this particular patient. Autonomic dysreflexia is a complication of SCI where environmental stimuli below the level of the injury elicit a massive sympathetic discharge leading to possibly life-threatening hypertension.

Pregnancy/Perinatal History

Ask child's mother about pregnancy and perinatal history to identify any premorbid problems that might affect recovery.

Developmental & Educational Progress

Developmental/educational history should be explored to identify any premorbid problems, such as developmental delay or learning and attention problems that might interfere with recovery and/or require additional treatment.

Social & Family Functioning

Identify family functioning problems and strengths including financial resources for dealing with medical expenses. Ask about layout of patient’s home (e.g., how many stairs are involved) and places they often visit.

Physical Exam

Vital Signs

RR | HR | BP - especially to monitor for autonomic dysreflexia

Growth Parameters

Ht | Wt | BMI - especially to monitor for obesity

Skin

Look for areas of redness, warmth, tenderness, and ulceration. If there is a history of autonomic dysreflexia, look for ingrown toenails (a potential pain trigger). Check for incipient decubitus ulcers.

Chest

Listen for decreased breath sounds, wheezing, and breathing difficulties. Auscultate for pneumonia, access depth of breathing, check ventilator settings if applicable.

Abdomen

Check for mobile, non-tender masses that may represent stool and distended bladder, particularly if autonomic dysreflexia is a problem.

Extremities/Musculoskeletal

Assess mobility, strength, and coordination. Look for contractures and decreased range of motion of joints. Evaluate as appropriate for scoliosis and hip instability. See Musculoskeletal Exam for Common Orthopedic Complications (PDF Document 579 KB) for a form for assessing functional abilities, joint mobility, and muscle strength.

Neurologic Exam

Confirm level of injury as a baseline for future evaluations; include sensory, motor, and reflexes. Look for spasticity.

Testing

Laboratory Testing

Consider checking post-void bladder residual, UA, and culture if symptoms of infection or autonomic dysreflexia are occurring.

Imaging

An acute decrease in function may trigger re-imaging of brain and/or spine.

Other Testing

In a non-traumatic setting, electromyography and/or nerve conduction studies might be used to either rule in/out nerve muscle involvement (i.e., to rule out/support possibility of cord injury).

Screen for depression. See Center for Epidemiological Studies Depression Scale for Children (CES-DC) (PDF Document 37 KB) for a 20-item self-report inventory.

Specialty Collaborations & Other Services

Pediatric Physical Medicine & Rehabilitation (see ID providers [1])

Provides ongoing care to prevent complications, promote recovery, and assure that remaining function is optimized. Often works with the physiatrist who was involved during the acute inpatient stay to address a broad set of issues, including spasticity, sexuality, toileting, recreation, transportation, and psychological well-being.

Physical Therapy (see ID providers [34])

Provides outpatient and home programming while broadly concentrating on gross motor movements and positioning. Follow-up appointments should be considered if status is worsening.

Occupational Therapy, Pediatric (see ID providers [27])

Provides outpatient/home programming, broadly concentrating on activities of daily living. Follow-up appointments should be part of the discharge plan. Reassessment should be considered if status changes.

Pediatric Pulmonology (see ID providers [1])

Assists with pulmonary toilet and/or ventilation management when the injury is in the cervical cord.

Pediatric Gastroenterology (see ID providers [3])

Consider for evaluation and treatment of neurogenic bowel issues and associated GI complaints.

Pediatric Urology (see ID providers [1])

Consider for evaluation and management of a neurogenic bladder and when making changes in the bladder program.

Treatment & Management

Overview

Treatment of the acute SCI occurs in the hospital and may include surgical stabilization of the vertebral column, high dose intravenous steroids, and airway management. After the acute phase, the primary risks to life are from associated complications, usually infection of the lungs or kidneys or septicemia from decubitus ulcers. The role of the medical home in monitoring for and responding to illness in these children is critical; however, the focus of management should be optimizing function and developmental/educational outcomes. Avoidance and management of complications are directly related to perceived quality of life in patients with SCI. [Vogel: 2002] Collaboration with subspecialists, particularly physiatry and a rehabilitation team, is key in achieving best outcomes.

Pearls & Alerts for Treatment & Management

Depression after SCI

Children sustaining SCI have an increased risk for depression as children [Craig: 2008] and into adulthood. [Anderson: 2007] Depressive symptoms are associated with increased mortality after SCI. [Krause: 2008]

Chronic pain

Chronic pain in children following SCI may respond to tri-cyclic antidepressants, SSRIs, and SNRIs - similar to other types of chronic pain, such as headaches. A referral to a pain clinic in refractory cases may be helpful (Pain Management (see ID providers [5])).

Systems

Musculoskeletal

Spasticity and Contractures
Muscles contract slightly at rest (tone) and are dependent on inhibitory input from the brain, which is interrupted by SCI. Muscles innervated from below the level of the injury may develop high tone or spasticity. Spasticity can take weeks to months to develop after the spinal shock that follows injury.

Often the spasticity will hold a joint in a bent posture, which over time leads to permanent contractures due to tendon remodeling. In addition to pain, loss of function, and positioning problems with the involved joints, inner surfaces of contracted joints, such as the palm or armpit, can develop skin breakdown that is very difficult to treat.

During the initial hospital visit, physical therapy should have been arranged and caregivers taught to perform range of motion exercises to prevent or limit contracture development. Ask about range of motion exercises and physical therapy visits – if spasticity and decreasing range of motion are observed, consider referral to a physiatrist for botulinum toxin and/or phenol injections.

Oral medications, such as baclofen or valium, may be used to prevent spasticity, although their efficacy is limited by sleepiness at the doses often required. Baclofen is usually tolerated at higher doses if titrated gradually. [Montane: 2004]

An implantable baclofen pump may be used in children with severe spasticity (see Baclofen Pump Information (Medtronic)).

If contractures occur, surgery to release the tight tendon or to move it to another site to decrease its pull on the affected joint may be necessary. Selective dorsal rhizotomy (SDR) has been used in the management of spasticity in selected children with cerebral palsy and may have a role in the management of SCI-induced spasticity. [Reynolds: 2014]

Scoliosis
Paralysis and spasticity may lead to scoliosis in children with spinal cord injuries, particularly if the injury occurred prior to puberty. [Dearolf: 1990] Scoliosis may take months to years to develop. Bracing may be used for positioning to facilitate seating and buy time before surgery.

Heterotopic Ossification
Symptoms of heterotopic ossification include erythema, pain, swelling over a joint, and restricted range of motion. Failure to detect and treat this process can lead to permanent loss of joint motion. Treatment is somewhat controversial and will probably require a visit to a rehabilitation specialist to consider pharmacologic treatment with etidronate or indomethacin, and enhancement of the physical therapy regimen. Because joints with decreased range of motion may present as spasticity or dystonia, a visit with a neurologist to rule out some other evolving neurological process may be necessary. Sometimes orthopedic surgery is required to release the joint contracture or remove the ossification after it has matured. See Heterotopic Ossification (eMedicine) for more information.

Specialty Collaborations & Other Services

Pediatric Physical Medicine & Rehabilitation (see ID providers [1])

Helps manage spasticity and contractures, evaluates for scoliosis and heterotopic ossification, and coordinates physical and occupational therapies. A physiatrist generally is involved on a regular basis.

Pediatric Orthopedics (see ID providers [4])

Patient mobility is highly correlated with patient independence. Fitting for appropriate orthoses to prevent contractures and improve function is vital. Use of mobility devices, adaptive equipment, and other modalities such as electrical stimulation units should be encouraged.

Pediatric Nephrology (see ID providers [1])

Facilitates the restoration of muscle strength and flexibility; improves mobility and coordination; and, maintains body functions through exercise. Gait training may be taught to patients with difficulty walking and could include teaching use of assistive devices (e.g., walker, crutches, or cane).

Occupational Therapy, Pediatric (see ID providers [27])

Encourages independence by helping the patient with daily tasks such as dressing, bathing, food preparation, going to the toilet, and other activities of daily living.

Skin & Appearance

Decubitus ulcers are most likely to occur at the hips, heels, and buttocks. They are first seen as an area of erythema that persists following release of pressure on the affected body part. Before discharge from the initial hospitalization, the patient and caregivers should have been taught to move the child with SCI frequently to prevent this complication, as severe decubitus ulcers can become infected and are a cause of mortality if not treated. If there are no signs of pressure ulcers, children should be moved every two hours and more frequently if redness is present. The medical home should reinforce this teaching during visits. Special wheelchair cushions and mattresses may be used to prevent pressure sores. See Decubitus Ulcer Description (Merck Manuals) for more details.

Genito-Urinary

Bladder problems, if not identified early and treated, can be severe and lead to autonomic dysreflexia, chronic infection, high bladder pressures, vesicoureteral reflux, and kidney failure. Continence and avoidance of urinary complications improves quality of life in people with SCI. Evolution of the specifics of bladder management begun during the initial hospitalization should be managed by the medical home in collaboration with specialists when necessary. Ideally, the child's bladder will have low pressure, no detrusor muscle contractions against a closed bladder sphincter, and complete emptying with each void. Occasionally, medication and/or surgery are required to achieve this. Patients may also need to take antibiotic prophylaxis to prevent UTI and/or stool softeners to avoid constipation.

Complete emptying, leaving minimal residual after voiding, is important to prevent reflux. Residual urine volumes should be checked periodically by the patient/caregiver. Good fluid intake is important to prevent complications of both bladder and bowel and should be stressed with patients and their families. Generally, a cystometrogram and a renal ultrasound should be done within the first few months after injury and every 1-2 years thereafter to measure bladder pressure and assess kidney size. Signs and symptoms of infection, including smelly, bloody, or discolored urine, abdominal pain, and increased temperatures or rigors, should be watched for. Suprapubic or chronic urethral catheterization or a continent urinary diversion [Chulamorkodt: 2004] may be initiated by the urologist in some situations.

For a helpful article on the evaluation and treatment of the neurogenic bladder in children, from many causes, see [Bauer: 2008]. The Portal's Constipation module contains information for managing constipation.

Specialty Collaborations & Other Services

Pediatric Urology (see ID providers [1])

Periodic visits with a urologist may be helpful for a child with bladder management problems.

Maturation/Sexual/Reproductive

Families often ask whether their child will be able to be a biologic parent. Adolescents with spinal cord injuries also have questions about their sexuality and might have feelings of not being attractive or worries about bladder and bowel accidents. Issues of sexuality and parenthood, including sexual activity and parenting, should be raised by the medical home and/or the rehabilitation physician. Practical advice, such as talking about planning sexual activity after bowel and bladder care to avoid accidents, can be very helpful and lead to more discussion. Psychological counseling might also be necessary at some point to help adolescents deal with emotional issues regarding poor body image, intimacy, and sexuality issues.

Males: Sexual responsiveness in males will depend on the level and completeness of their injury. Almost all men with complete and/or higher levels of SCI will be able to have reflex erections, but may not have psychogenic erections. The erection may not be sustained enough or complete enough for sexual activity, however, a variety of treatments may be helpful. The patient should be referred to urology for more information. Though condom use may be difficult in men with impaired upper extremity function, their use should be advised for the same reasons as for other patients. Even though impaired ejaculation and/or decreased sperm motility may make biologic impregnation difficult, fertility specialists may be able to obtain semen for artificial insemination. See Sexuality and Sexual Function After SCI (UAB) for patient information.

Females: Little information is available regarding the sexual function of females after SCI. If the level of injury is high or complete, psychogenic stimulation leading to vaginal lubrication may not occur, but local stimulation may lead to reflex lubrication, and water-based lubricants can be used to avoid vaginal dryness and irritation. About half of women with spinal cord injuries are able to have orgasms. The majority of women after SCI are able to get pregnant and have normal vaginal deliveries. Therefore, adolescent females with SCI should have the usual counseling regarding sexually transmitted disease and pregnancy. SCI-related care is more complicated during pregnancy, including the use of chronic medications, pressure sores, autonomic dysreflexia, and bladder and bowel care. See Pregnancy after SCI (UAB) and Sexuality and Sexual Function After SCI (UAB) for patient information.

Cardiology

Autonomic dysreflexia is usually initiated by pain/discomfort from an overfull bladder, fecal impaction, or skin irritation due to tight clothing bands, sunburn, ingrown toenail, etc. Episodes of autonomic dysreflexia should be monitored in the medical home; causes and what the patient and/or family found effective in managing the episode should be identified. Families should be equipped with a blood pressure cuff, education about the individual's baseline blood pressure, and what would constitute an elevated BP. Individuals with SCI often have lower baseline blood pressures – systolic BP in those with quadriparesis may be less than 100. A blood pressure of 120 systolic or above 70-80 mm Hg diastolic may be abnormally high for these individuals. [Hickey: 2004]

Although anti-hypertensive medications can be used when necessary, the best treatment consists of good bowel and bladder care and prompt removal of irritants. Education of patients and caregivers can help prevent episodes or allow for early recognition. [Hickey: 2004] Patients may want to visit Autonomic Dysreflexia (SCI-Info-Pages) for more information; Autonomic Dysreflexia (UAB) (PDF Document 277 KB) provides a 5-page pdf with information for patients and families about warning signs, symptoms, importance of blood pressure measurements, triggers, and treatments.

Swelling of the extremities and orthostatic hypotension (low blood pressure when rising) can also occur. Orthostatic hypotension can be helped by abdominal binders, increased salt intake, TED hose, Florinef, etc. There is a small risk that circulation changes may increase risk of developing blood clots, such as deep vein thrombosis or a pulmonary embolus.

Other

Pain Management: Ideally, patients and providers should aim to prevent acute pain through avoidance of pressure ulcers and fall-related injuries. Chronic pain prevention is achieved via various therapies, range of motion exercises, and safety measures relating to mobility and transitions.

Specialty Collaborations & Other Services

Pain Management (see ID providers [5])

Referral may be helpful for acute or chronic pain management.

Issues Related to Spinal Cord Injury

Constipation
Wheelchairs and Adapted Strollers

Funding & Access to Care

Writing Letters of Medical Necessity

Mobility/Function/ADLs/Adaptive

Inpatient Rehabilitation Criteria and Treatment
Mobility

Ask the Specialist

How do I know when my child can start cathing him or herself?

The ability to self-catheterize depends on the type of SCI, 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 possible, increases the independence of the child.

What should I tell my child with an 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 for your child if necessary.

My child had an SCI two years ago and is doing well without any major problems. 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 who 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/she gets older and it is developmentally appropriate to involve him/her in self-care, should monitor for possible complications.

Resources for Clinicians

On the Web

The Portal's Childhood Obesity Screening & Prevention discusses screening for risk factors, screening for the conditon, and role of the medical home in preventing obesity.

Spinal Cord Injury Information Network (UAB-SCIMS)
A wealth of information about SCI for health care professionals, including patient education materials; University of Alabama at Birmingham Spinal Cord Injury Model System.

SCI-INFO-PAGES
A "best of the web" site for SCI health and caregiver information. Includes information about spinal cord injury, rehabilitation sites, clinical trials, related problems, and resources for patients with SCI and their caregivers; created by an individual with a spinal cord injury.

Helpful Articles

PubMed search for articles published within the last 5 years about pediatric spinal cord injuries

Bauer SB.
Neurogenic bladder: etiology and assessment.
Pediatr Nephrol. 2008;23(4):541-51. PubMed abstract / Full Text

Buldini B, Amigoni A, Faggin R, Laverda AM.
Spinal cord injury without radiographic abnormalities.
Eur J Pediatr. 2006;165(2):108-11. PubMed abstract

Klaas SJ, Kelly EH, Anderson CJ, Vogel LC.
Depression and anxiety in adolescents with pediatric-onset spinal cord injury.
Top Spinal Cord Inj Rehabil. 2014;20(1):13-22. PubMed abstract / Full Text

Parent S, Mac-Thiong JM, Roy-Beaudry M, Sosa JF, Labelle H.
Spinal cord injury in the pediatric population: a systematic review of the literature.
J Neurotrauma. 2011;28(8):1515-24. PubMed abstract / Full Text

Sayama C, Chen T, Trost G, Jea A.
A review of pediatric lumbar spine trauma.
Neurosurg Focus. 2014;37(1):E6. PubMed abstract / Full Text

Clinical Tools

Assessment Tools/Scales

Medical Home Questionnaire for SCI (MHP) (PDF Document 51 KB)
Historical questions and physical exam items that may be helpful in assessing patients with SCI; Medical Home Portal.

International Standards for Neurological Classification of Spinal Cord Injury Worksheet (ASIA) (PDF Document 637 KB)
Two-page assessment sheet updated in 2019; American Spinal Injury Association.

Center for Epidemiological Studies Depression Scale for Children (CES-DC) (PDF Document 37 KB)
Ages 12 to 18; 6th grade reading level; Spanish version available; 20 items, 5 to 10 minutes to complete. No fee required.

Clinical Checklists & Visit Tools

Musculoskeletal Exam for Common Orthopedic Complications (PDF Document 579 KB)
A concise, easy-to-use tool to document the limitations of a child's musculoskeletal abilities and exam; Medical Home Portal.

Patient Education & Instructions

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.

Resources for Patients & Families

Information on the Web

The Portal's page about Special Needs Trusts may be helpful for some families.

Spinal Cord Injuries (MedlinePlus)
Basic information and links to additional reliable sources; 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.

National & Local Support

United Spinal Association
A products & services directory with reviews.

Studies/Registries

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

Services for Patients & Families in Idaho (ID)

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.

Authors & Reviewers

Initial publication: December 2008; last update/revision: December 2014
Current Authors and Reviewers:
Author: Teresa Such-Neibar, DO
Reviewers: Meghan Candee, MD
Lynne M. Kerr, MD, PhD

Bibliography

American Spinal Injury Association.
Pediatric Committee - Mission and Goals.
(2014) http://www.asia-spinalinjury.org/pediatrics/pediatric_goals.php. Accessed on Dec. 2014.

Anderson CJ, Vogel LC, Chlan KM, Betz RR, McDonald CM.
Depression in adults who sustained spinal cord injuries as children or adolescents.
J Spinal Cord Med. 2007;30 Suppl 1:S76-82. PubMed abstract / Full Text

Bauer SB.
Neurogenic bladder: etiology and assessment.
Pediatr Nephrol. 2008;23(4):541-51. PubMed abstract / Full Text

Buldini B, Amigoni A, Faggin R, Laverda AM.
Spinal cord injury without radiographic abnormalities.
Eur J Pediatr. 2006;165(2):108-11. PubMed abstract

Calhoun CL, Schottler J, Vogel LC.
Recommendations for mobility in children with spinal cord injury.
Top Spinal Cord Inj Rehabil. 2013;19(2):142-51. PubMed abstract / Full Text

Chulamorkodt NN, Estrada CR, Chaviano AH.
Continent urinary diversion: 10-year experience of Shriners Hospitals for Children in Chicago.
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