understanding spina bifida liam bennett matthew colbert michael dyke danielle mcgettigan jenelle...

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UNDERSTANDING SPINA BIFIDA Liam Bennett Matthew Colbert Michael Dyke Danielle McGettigan Jenelle Penney Alexa Thorne

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UNDERSTANDING

SPINA BIFIDA

Liam Bennett

Matthew Colbert

Michael Dyke

Danielle McGettigan

Jenelle Penney

Alexa Thorne

Outline: Introduction to Spina Bifida• What is Spina Bifida?• Prevalence• Types of Spina Bifida

Spina Bifida Occulta

Spina Bifida Cystica (Meningocele)

Spina Bifida Cystica (Myelomeningocele)

• Causes of Spina Bifida

Neural Tube Birth Defect

Heredity and Environment

• Signs and Symptoms• Diagnosis• Treatment

Outline: Students with Spina Bifida• General Information• Evaluation• Impact on School Life• Learning Problems• Emotional Independence• Implications

Planning and Awareness

Instruction

Social and Emotional Well-Being

INTRODUCTION TO SPINA BIFIDA

What is Spina Bifida?• Spina bifida is Latin for “split spine”

What is Spina Bifida?• A developmental congenital disorder• Caused by incomplete closing of the embryonic neural

tube

existing at birth

What is Spina Bifida?• Vertebrae overlying the spinal cord are not fully formed• These vertebrae remain unfused and open• If this opening is large enough, a portion of the spinal cord

may protrude

What is Spina Bifida?• The child’s spinal cord does not form properly • Spina bifida sometimes makes it difficult for the child to

walk or carry on with daily activities

Prevalence

• Spina bifida is one of the most common birth defects with a worldwide incidence of about 1-2 in every 1000 births

• More common in girls

• 90% of those affected live an average life span

Types of Spina Bifida

• Spina bifida malformations fall into 3 categories:

1) Spina Bifida Occulta

2) Spina Bifida Cystica with Meningocele

3) Spina Bifida Cystica with Myelomeningocele

Types of Spina Bifida

Spina Bifida Occulta

• Occulta is Latin for “hidden”

• Mildest form• Most common form• Asymptomatic in most cases

• Splits in the vertebrae are so small that the spinal cord does not protrude

Spina Bifida Cystica (Meningocele)

• Least common form• There is a sac or cyst• This sac contains tissues that cover the spinal cord and cerebrospinal fluid

• Nerve damage is minimal

• Little disability

Spina Bifida Cystica (Myelomeningocele)

• More common than Meningocele

• There is a sac or cyst• This sac contains tissue, fluid, nerves, and part of the spinal cord

• Paralysis occurs below the damaged region

• Most severe

Causes of Spina Bifida

• How Spina bifida develops is well known• However, we are still not entirely sure why it develops

• Some possible causes:1) Neural Tube Birth Defect

2) Heredity and Environment

Neural Tube Birth Defect• The neural tube may fail to close• This happens during the first month of embryonic

developmentoften before the mother knows she is pregnant

Neural Tube Birth Defect

• Drugs like valporic acid and anticonvulsants may cause the neural tube defects during pregnancy

• Increased body temperature during the first trimester of pregnancy may also cause neural tube defects

• Fever• Use of hot tubs• Use of electric blankets

Neural Tube Birth Defect• Research has shown the lack of folic acid (folate) is a

contributing factor to the pathogenesis of neural tube defects, including spina bifida

• Adding folate to a mother’s diet can reduce the incidence of neural tube defects by about 70%

• It is unknown how or why folic acid has this effect

Heredity and Environment

• Spina bifida, like cancer and hypertension, likely result from the interaction of multiple genes and environmental factors

• Women who are obese are more vulnerable to give birth to a child with spina bifida

• Women who are diabetic are also more vulnerable to give birth to a child with spina bifida

Heredity and Environment

• Spina bifida is common certain races like Hispanics and Caucasians

• Women who have given birth to one child with spina bifida have an increased risk of having another child with spina bifida

Animation

WHAT IS SPINA BIFIDA?

http://www.youtube.com/watch?v=ouMi5z1vwbE

Signs and Symptoms• Complications can range from minor physical problems to

severe physical and mental disabilities• Many people with spina bifida do not have learning

disabilities and score an average IQ score

Signs and Symptoms

Physical Complications

• Leg Weakness and Paralysis• Orthopedic Abnormalities• Bladder and Bowel Control Problems• Skin Irritations• Abnormal Eye Movement

Signs and Symptoms

Neurological Complications

• Arnold Chiari II Malformation• Hydrocephalus• Smaller Cerebellum• Abnormally Developed Corpus Callosum

Diagnosis

Pregnancy Screening• Detailed fetal ultrasound• Testing the mother’s blood (AFP screening)

After Birth• A doctor can preform a physical examination• CT and MRI scan can identify the intensity of damage

caused to the nerves

Treatment

Treatment depends on the severity of the case

• For children with mild defect, no treatment is required• For children with severe defect, surgery is done to correct

nerve damage• For children with myelomeningocele, surgery is done

immediately after birth to reduce risk of infection• Shunting is done to prevent accumulation of fluid in the

brain

Treatment

• In severe cases of spina bifida children will face problems in walking and carrying out daily activities

• Most children who have undergone corrective surgery can walk with the support of braces

• Wheelchairs may be needed for covering long distances

STUDENTS WITH SPINA BIFIDA

General Information• The large majority of students with spina bifida are in

educational programs within “regular” schools, usually in “regular” classrooms

• It is critical that school personnel involved with student with spina bifida be familiar with the condition

General Information

• Many children with spina bifida have an average ID score• However, some may need early educational intervention

to help with learning difficulties (like trouble making decisions)

• May also need extra help from teachers and counselors to adapt to school, since physical disabilities may cause emotional and social problems

Evaluation• Specific tests are often required by the government in

order to obtain special services• Teachers need to identify areas where students with spina

bifida have strengths and difficulties• Special testing may be required:

1) Intelligence testing

2) Academic testing

3) Visual motor testing

Evaluation

• Other tests that may be given to help teachers and counselors learn more about a child’s:1) Language ability

2) Learning skills

3) Social functioning

4) Emotion well-being

Impact on School Life

How Spina Bifida May Affect Executive Function

Specific areas of difficulty in some individuals:• Planning and Organizing• Working Memory• Problem Solving• Cognitive Flexibility• Attention Span

Impact on School Life

How Spina Bifida May Affect Academic Skills

• Individuals may struggle with math and reading• 60% of children with spina bifida are diagnosed with a

learning disability• Early intervention to address mathematics difficulties and

associated executive functions is cruical

Impact on School Life

How Spina Bifida May Affect Social Interactions

Compared to other children, youths with spina bifida may• have fewer friends• spend less time with peers• be more socially immature• be more passive in social situations

Impact on School Life• Like all children, those with spina bifida often can be put in

a range of classes• Parents, educators, health care professionals and

sometimes children must work together to choose what is best

• This decision can become part of the child’s Individual Education Plan (IEP)

Learning Problems

• Beyond getting a child into the right classes, there are other decisions to make

• If a child has perceptual-motor, inattention, memory or other learning problems, but is in “regular” classes, teachers will often see these problems and will work with the parents and children

• The parent can ask that these problems be addressed in the IEP.

Emotional Independence• Like all kids, children with spina bifida may try to avoid

schoolwork, chores, or personal care (which is normal)• However, some children with spina bifida may become too

dependent on parents or teachers• Parents and teachers should be aware of this and help

children achieve emotional independence

Implications

Implications for Planning and Awareness

• Meet with the student and parents early in the school year• Develop a written management plan• If the student is taking medications discuss the side

effects• Learn from parents whether the student has a shunt

Implications

Implications for Instruction

• Be aware that students with severe spina bifida may have numerous absences due to medical appointments

• Determine a student’s particular strengths and needs• Provide adapted tools and materials • Provide additional time for transitions between classes• Provide close supervision during physical activities

Implications

Implications for Social and Emotional Well-Being

• Engage the student and parents in planning for transitions between grade levels and different schools

• Consider having a "key person" the student can check in with on a weekly (or daily basis)

• Provide emotional and social support in a matter-of-fact way

• Take steps to ensure the student does not feel left out during recess, intramural or other school activities

References

• http://kidshealth.org/parent/system/ill/spina_bifida.html

• http://www.webmd.com/parenting/baby/tc/spina-bifida-topic-overview

• http://www.bced.gov.bc.ca/specialed/awareness/65.htm

• http://sped.wikidot.com/spina-bifida