Holoprosencephaly (HPE) is a birth defect where the brain fails to properly divide into left and right hemispheres. It occurs early in gestation and ranges in severity from mild to severe. HPE affects between 1 in 5,000-10,000 live births, with the majority of fetuses with HPE not surviving past 6 months. The cause is largely unknown but some genetic and environmental factors have been identified. Physical characteristics often involve facial deformities and cognitive impairment correlates with severity of brain malformation.
2. HPE
Birth defect which occurs during the first
few weeks of gestation.
Brain does not divide into separate
hemispheres
Ranges from mild to severe
3. HPE
Affects between 1 in 5,000-10,000 live births
Frequency may be as high as 1 in 200-250
< 3% of all fetuses with HPE survive to delivery
Majority won’t survive past 6 months
~Carter Centers for Brain Research in Holoprosencephaly and Related
Malformations
7. HPE symptoms
Excessive fluid in the brain
Varying degrees of mental retardation
Epilepsy
Other organ system abnormalities
cardiac, skeletal, gastrointestinal
Degree of delay correlates with severity of
malformation
9.
Control with medication
Telling other students what to expect
Unexpected seizures can be scary for everyone
What to do in an emergency
Epilepsy
10.
Tube feeding can be given in 3 different ways
Tube positioning
Pump
Gravity drip
Syringe
Jejunostomy
Gastrostomy
Nasogastric
Keeping area around tube clean
Usually the responsibility of the school nurse
Gastrointestinal
11.
Depending on degree of delay students may
experience difficulty with
Learning
Communication
Social & Independent skills
Academic
Leisure & Work skills
Acquisition & Transfer of skills
Difficulty with physical/motor
Cognitive
14.
“In its simplest terms, occupational therapists and
occupational therapy assistants help people across
the lifespan participate in the things they want and
need to do through the therapeutic use of everyday
activities (occupations). Common occupational
therapy interventions include helping children with
disabilities to participate fully in school and social
situations, helping people recovering from injury to
regain skills, and providing supports for older adults
experiencing physical and cognitive changes.”
- See more at: http://www.aota.org/AboutOccupational-Therapy.aspx#sthash.rvNWxQB7.dpuf
Occupational Therapy
15.
“Physical therapists can teach patients how to
prevent or manage their condition so that they
will achieve long-term health benefits. PTs
examine each individual and develop a
plan, using treatment techniques to promote
the ability to move, reduce pain, restore
function, and prevent disability. In
addition, PTs work with individuals to prevent
the loss of mobility before it occurs by
developing fitness- and wellness-oriented
programs for healthier and more active
lifestyles.”
http://www.apta.org/aboutPTs/
Physical Therapy
Physical development a child's ability to move, see and hearLanguage and speech development a child's ability to talk and communicateSocial and emotional development a child's ability to play, interact and relate to othersAdaptive development a child's ability to handle self-care functions, such as feeding and dressingCognitive development a child's ability to think and learn
The occupational therapist is trained to modifying the physical environment as well as training the person to use assistive equipment to increase independence. They focus to help their patients engage in meaningful activities of daily living (ADLs). The physical therapist is trained to identifying and maximizing quality of life and movement potential within the spheres of promotion, prevention, diagnosis, treatment/intervention, and rehabilitation. They focus on the physical, psychological, emotional, and social well-being.