Neural Tube Defects - Ongoing Assessment

General

In infants, monitor crying, sucking, and general vigor.

Growth Parameters

Ht | Wt | BMI | OFC | Monitor all growth parameters, including length performed in a standardized fashion (extending the knees as much as possible). For a child who is unable to stand, you may need to follow length (as opposed to height), understanding that translation to a height growth chart may be initially misleading. For many reasons, obesity is fairly common in children with NTDs and should be managed early. Head circumference should be followed until there is no further growth, particularly in children with a history of hydrocephalus and shunting.

Vital Signs

Should include blood pressure at all visits, and at least twice a year, because of the risk of renal involvement from neurogenic bladder and reflux.

Skin

In children who are not ambulatory, evaluate skin integrity, looking particularly for pressure sores or decubiti.

Chest

Air movement may be restricted by spinal deformity or weakness.

Abdomen

Feel for kidneys (hydronephrosis), and for masses that suggest constipation.

Genitalia

Check anal sphincter tone initially and as clinically indicated afterwards. In male infants, observe urinary stream if possible.

Musculoskeletal

Look for spinal deformity such as kyphosis, scoliosis, etc.

Neurologic Exam

Check reflexes and movement for changes since last exam.

Sensory Testing

Routine screening for hearing and vision may be adequate. However, if cognitive skills are impaired, screening may not be as effective as needed.

Laboratory Testing

Routine testing is not indicated, but consider urinalysis and culture with any concern of infection.

Imaging and EEG

Shunt series and head CT may be indicated for concerns regarding shunt malfunction; generally done in collaboration with neurosurgical colleagues.
EEG may be indicated for a clinical question of seizures.

Other Testing

Spine MRI - the new appearance of scoliosis or hip dislocation may be a sign of spinal cord tethering.

Spina Bifida Clinics (see Services below for relevant providers)

Most or all of the subspecialists listed below are likely available in a multidisciplinary Spina Bifida Clinic but, if not, they should be consulted initially and participate in ongoing evaluation and management.

Pediatric Orthopedics (see Services below for relevant providers)

Evaluate for and treat orthopedic complications, including scoliosis, kyphosis, hip dislocation, etc. Pediatric orthopedics should be involved at an early stage and assessments scheduled regularly.

Pediatric Urology (see Services below for relevant providers)

Evaluate and manage neurogenic bladder and consequent problems. Because difficulties with voiding occur in infancy and may lead to kidney damage, urological assessment begins in the newborn period.

Pediatric Neurosurgery (see Services below for relevant providers)

Neurosurgical care is needed on an ongoing basis to evaluate and manage hydrocephalus.

Pediatric Neurology (see Services below for relevant providers)

Pediatric neurology should be involved early to monitor development and the neurological exam, as well as to diagnose and treat of seizures if they occur.

Pediatric Physical Medicine & Rehab (see Services below for relevant providers)

PMR Team - assessment and treatment of the child with disabilities should begin soon after birth with PT, OT and speech therapy added when appropriate. This team will also order and manage positioning and mobility needs, such as feeding chairs and wheelchairs, and can help in the management of issues like constipation.

Developmental Pediatrics (see Services below for relevant providers)

May be helpful with development, behavior, nutrition, constipation, and school issues.

Neuropsychology (see Services below for relevant providers)

To evaluate achievement and IQ to guide tailoring educational programs based on the child's strengths and weaknesses.

Educational Advocacy (see Services below for relevant providers)

Educational and vocational specialists can help guide academic and vocational plans, particularly for those patients with learning disabilities.

For Professionals

Neural tube defects in the neonatal period (Emedicine)
Article by Richard G Ellenbogen, BA, MD, Professor and Chairman, Theodore S. Roberts Endowed Chair in Pediatric Neurosurgery, Department of Neurological Surgery, University of Washington; accessed 2/8/09.

For Parents and Patients

Developmental Pediatrics

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Educational Advocacy

Children's Education Services, more info...
100 N Mario Capecchi Drive
Salt Lake City, UT 84113
Phone: 801-662-4914
http://intermountainhealthcare.org/xp/public/documents/pcmc/school.pdf

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Neuropsychology

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Occupational Therapy

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Pediatric Neurology

See all Pediatric Neurology services providers (3) in our database.

Pediatric Neurosurgery

See all Pediatric Neurosurgery services providers (1) in our database.

Pediatric Orthopedics

See all Pediatric Orthopedics services providers (2) in our database.

Pediatric Physical Medicine & Rehab

See all Pediatric Physical Medicine & Rehab services providers (6) in our database.

Pediatric Urology

See all Pediatric Urology services providers (1) in our database.

Physical Therapy

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Speech/Language Therapy

See all Speech/Language Therapy services providers (35) in our database.

Spina Bifida Clinics

Spina Bifida Clinic, more info...
100 Mario Capecchi Drive
Salt Lake City, UT 84113
Phone: 801-662-1675
http://intermountainhealthcare.org/xp/public/primary/docsclinics/clinics/spinabifida.xml