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What Should I Do Now?
Case Authors:
Case Advisor:
Slide set adapted from those created by Laurie Glader, MD and Ellen Elias, MD The Complex Child in Primary Care
Tutor Guide
Case Materials:
Tutor’s GuideCaseHandouts: Introduction to Cerebral Palsy, MDs DD BASICS, The medical home Slide SetReferences Evaluation Tools
Tutor’s evaluation/prior to presentationTutor’s evaluation/post presentationStudent evaluations Objectives:
By the end of the session, learners will be able to:
1. To develop a problem list for a child with multiple medical problems2. To prioritize family and physician goals for a child with multiple medical problems3. To understand the definition and differential diagnosis of the term "Cerebral Palsy"4. To understand the recognition and treatments of common complications of certain types 5. To identify impairments in different domains of function (posture and mobility, communication and cognition, feeding and nutrition, and social function and adaptation) inchildren with chronic conditions and to begin to address these impairments.
Overview of Complex Child Case:
Cerebral palsy is a common cause of childhood disability. In order to provide a “medical home”for the child with cerebral palsy, the primary care physician must be able to assess a child withcomplex needs and coordinate care among specialists and other agencies providing care for thechild. An awareness of the associated medical conditions is needed to make appropriate referrals.
Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
This case presents the multiple challenges of caring for children with chronic conditions in a busyoffice practice. Primary care physicians often have difficulty integrating children with chronicconditions into office schedules and may not feel well trained to handle "high-severity," "low-prevalence" conditions. This has led to an over-arching system of care focused in hospitals, oftenwith no general pediatric "coordinating" services. Poor immunization rates and a high prevalenceof malnutrition are indicators that children with chronic conditions often lack adequate primarycare. Returning to basic principles of developmental assessment and formulating written problemlists can help primary care physicians catalog, diagnose, and begin to manage these conditionsmore effectively.
This case presents the story of a 14-year-old boy who presents as a new primary care patient.
Clinicians will learn how to provide an initial assessment, prioritize goals for care, and develop atreatment plan.
Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
GUIDING QUESTIONS FOR DISCUSSION:
1. What should go on the problem list for this visit?
2. What other information historical information do you want?
3. What will you be looking for on physical exam?
4. What else can you add to the problem list?
5. Do you agree with the diagnosis of dystonic quadriplegic cerebral palsy?
6. How will you prioritize your concerns?
7. Which, if any, specialists would you involve?
8. What other resources could be helpful?
9. What factors may be contributing to malnutrition in Brian’s case?
10. How should Brian’s malnutrition be addressed?
11. Can Brian's motor function be improved?
12. Can Brian's communication abilities be improved?
Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
GUIDING QUESTIONS AND DISCUSSION
1. What should go on the problem list for this visit?
Motor impairmentDysarthriaCommunication ImpairmentSwallow dysfunctionPoor weight gainPoor dentitionEducational setting may not be appropriateReactive airway diseaseHistory of multiple pneumoniasImmunizations not up to dateDroolingConstipation It is very useful to create problem lists for children with multiple medical problems. Such a listcan help the family and physician organize and prioritize their approach. Brian’s completehistory suggests several potential problems. He is not up to date on immunizations. Symptomsof upper respiratory infection, asthma and sleep disturbance may be due to aspiration of oralsecretions and ingested food. Brian’s difficulties with chewing, swallowing and drooling have ledto prolonged mealtimes, protein calorie malnutrition, caries, chronic dehydration and stoolimpaction. His communication abilities may be far better than previously realized. This haslimited his opportunities to interact and pursue interests if not limited occupationalopportunities.
2. What other information historical information do you want?
Delay in achieving milestones must be differentiated from loss of milestones. Risk factors fordevelopmental impairment must be sought (prematurity, prenatal maternal illnesses or toxicexposures, family history of neonatal death or significant neonatal morbidity, CNS trauma).
Depending on the history and physical: chromosomal studies, central imaging,electroencephalography, detailed neurogenetic testing, screens for congenital infection, thyroidfunction testing or extensive social intervention may be indicated.
3. What will you be looking for on physical exam?
--presence of pathological reflexes--cranial nerve exam Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
--motor exam--range of motion of joints--pain with motion or in any limbs--general body habitus--seating position in wheelchair--skin exam--back exam--lung exam Physical examination is helpful both to determine the appropriate diagnosis and to look forpossible associated conditions and sequelae of cerebral palsy. On initial exam, it is important todetermine the location of the dysfunction (upper motor neuron, lower motor neuron,neuromuscular junction, muscle fiber) and whether any syndromic dysmorphic features arepresent.
4. What else can you add to the problem list?
--poor dentition--needs new wheelchair--perineal irritation--contractures--scoliosis--systolic murmur This patient's physical examination reveals obvious indicators of malnutrition, dermatologic complications of inadequate bracing and positioning devices, and indications ofchronic airway inflammation. This patient presents with several common associatedcomplications of his neurologic dysfunction that must be addressed. These complications, leftuntreated, will add to the overall disability complex imposed by the primary condition (rootcause). Malnutrition, swallowing dysfunction, immobility, joint contractures, unrecognized(undocumented) cognitive/communication strengths and isolation are common in this population.
Primary caregivers should not assume that these joint contractures, unrecognized (undocumented)cognitive/communication strengths and isolation are inevitable in this population. Primarycaregivers should not assume that these areas are addressed just because the patient receives careat an academic center. Physicians there often assume that these areas are addressed locally byphysicians and schools.
Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
5. Do you agree with the diagnosis of dystonic quadriplegic cerebral palsy?
Cerebral Palsy in a non-progressive disorder of posture and movement caused by a static uppermotor neuron lesion. Upper motor neuron lesions produce hypertonicity (spasticity ordystonia), weakness, and hyperreflexia. Pyramidal (spastic) and extrapyramidal (dystonic,choreoathetotic, ataxic) and mixed types of cerebral palsy exist. Spastic cerebral palsy can befurther subdivided into quadriplegia (four extremities), hemiplegia (two extremities plus or minusfacial involvement on one side), and diplegia (both legs with little or no arm involvement).
Because of the organization of the CNS, extrapyramidal types always occur as quadriplegia.
Each type of Cerebral Palsy displays different rates of associated problems such as mentalretardation, seizures, communication disorders.
Brian clearly has quadriplegia and his dystonic movements are consistent with a diagnosis ofdystonic cerebral palsy.
Remember, children with neurogenetic and progressive motor impairments should not beconsidered to have cerebral palsy. This is the first important task of the physician primarilyresponsible for the care of the patient. The primary physician needs to ensure that someone(neurologist, geneticist or developmental specialist) has attempted to identify this root cause. Byhistory, the subject of this case presented with failure to meet milestones. He has had an"adequate" evaluation to identify the root cause of his developmental dysfunction. Based onthe specific type of cerebral palsy in this case (extrapyramidal), periodic metabolic orneurogenetic follow-up is indicated to try to identify this root cause as new information becomesavailable. Any loss of milestones is an immediate indication for evaluation.
6. How will you prioritize your concerns?
--family concerns--immediate health threats--referrals--longer term issues The family concerns must always be a high priority for children with multiple medical needs. Tofully address all of Brian’s needs is going to take a large investment of time and effort on the partof the family. Listening closely to the family and planning an approach that shows respect fortheir needs and family situation will create an environment in which the physician can workeffectively with the family. Parents of children with complex medical needs very often ofnecessity become fierce advocates for their children. It is important to express your best“medical opinion” to the family and to state clearly what you feel are the most pressing medicalissues. However, it is also important to recognize that they may not be willing or able to Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
implement every piece of advice. The number of specialist recommendations may quite literallybe impossible to carry out so every day the family makes decisions about what they will and willnot do. The physician who is able to take this comprehensive picture into consideration will bemost likely to effectively work with the family.
7. Which, if any, specialists would you involve?
--dentist--neurologist--orthopedist--speech/language – swallow study--cognitive testing--communication evaluation Geneticists, neurologists, developmental/behavioral pediatricians and metabolism specialists canoffer guidance with initial diagnosis of children with impaired development. Orthopedists andphysical medicine specialists can help with screening, preventing, and treating secondary skeletalcomplications of cerebral palsy. Psychologists may help with cognitive testing, schoolplacement and mental health issues. Social workers from early intervention programs, schools,and state agencies can help with community access and mental health issues. Speech andlanguage pathologists can help with communication assessment and treatment as well as possibleuse of sophisticated communication devices.
8. What other resources could be helpful?
--school system (for younger child Early Intervention)--SSI--Medicaid (don’t forget buy-in programs)--DMR--DPH--State commissions for Blind, Deaf--Parent support--Family Voices--KASA All children with developmental impairments or significant risk of these impairments are eligiblefor rehabilitation services through Early Intervention programs from birth to age three. Thesesame children are also eligible for cognitive, speech and rehabilitative services through their localschool departments from age three to twenty-two. This is dictated by federal law. Thesechildren may be eligible for enhanced health insurance or disability income through the SocialSecurity Administration. State departments of public health or mental retardation offer access toinformation, home health services and information networks. Several services (Mass. Network of Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
Information language pathologists can help with communication assessment and treatment as wellas possible use of sophisticated communication devices. State agencies (Department of PublicHealth, Department of Mental Retardation) offer provider training for issues concerned with thecare of Children with special healthcare needs. The American Academy of Pediatrics offersassistance with office material and training resources through their CATCH (Community Accessto Child Health) and Medical Home programs. Do not assume that a patient’s needs are beingmet by a single specialist or clinic at a tertiary medical center, previous primary physician, orschool system. information concerning exercise and recreational opportunities for people withdisabling conditions.
9. What factors may be contributing to malnutrition in Brian’s case?
Many factors contribute to growth failure in cerebral palsy. By far the most common factor isinadequate caloric intake to meet altered energy requirements. Poor dentition, cranial nervemediated chewing and swallowing dysfunction, aspiration of secretions or ingested food,gastroesophageal reflux or peptic ulcer disease, intestinal dysmotility, pain from constipation,and practical positioning factors during mealtime can all limit intake. Families may overestimatethe time spent feeding children with cerebral palsy and overestimate ingested calories. Reportedmealtimes in excess of thirty minutes are a documented risk factor for inadequate caloric intake.
Children with spasticity who are mobile and children with extra-pyramidal cerebral palsy mayrequire 150 to 200 % of recommended calories for age just to maintain weight due to the increasedmetabolic costs of movement. Children with profound spasticity and little or no movement mayrequire less than 75 % of recommended calories to maintain weight. These children are atparticular risk of calcium, vitamin and mineral deficiencies. Inadequate adaptive equipment canmake feeding difficult or even dangerous by contributing to aspiration risk. Less commondisorders of digestion (e.g. intestinal brush border enzyme deficiencies), and malabsorbtionsyndromes are as likely in children with cerebral palsy as in the general population and should beconsidered.
10. How should Brian’s malnutrition be addressed?
Dental referral and rehabilitation (under anesthesia if necessary) is indicated. A careful three-daydiary of offered and ingested food and liquids or twenty four hour recall will give a good estimateof baseline calorie, fat, carbohydrate, protein, vitamin, and mineral intake. A history ofmalabsorption and food intolerance should be sought. Laboratory testing could include completeblood count (for anemia and neutropenia of malnutrition) and iron studies, serum calcium andalbumin levels, vitamin D levels (especially if anticonvulsants have been taken). New adaptiveequipment geared toward increasing head and trunk stability during mealtimes should be obtained.
A speech therapy referral can help determine safe textures and temperatures of food to offer Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
based on the patients swallowing abilities. Videoflouroscopic swallow studies (modified bariumswallow) and radionucleotide salivagrams can document aspiration risk which is often notclinically evident. Bulk softeners and cathartics can decrease abdominal pain due to stoolimpaction. Never use oral mineral oil in a patient of any age who lacks head and trunk control dueto risk of aspiration and lipoid pneumonia. Empiric treatment with antacids, H 2 blockers,promotility agents is sometimes indicated before more invasive testing is sought. An estimate ofwhether the patients caloric needs are depressed, increased, or greatly increased should be made.
No current objective measure of caloric needs is clinically useful. High calorie supplements can beutilized and specific mineral and vitamin deficiencies should be corrected. Nasogastric feedingscan be begun on a temporary basis. Gastrostomy with or without fundoplication should beconsidered if supplements will be required for more than six weeks or if aspiration risk is high.
Goal weight for height is around 25%. Overweight is particularly difficult for people with motorimpairments and increases the risk of immobility, skin breakdown etc.
11. Can Brian's motor function be improved?
No. In general movement patterns in children with cerebral palsy are stable after the age of five.
Some increase in spasticity can be seen during times of rapid linear growth. Some increase inextrapyramidal symptoms is expected in late adolescence. Swallowing function, in particular, candeteriorate over time. Acquired orthopedic deformities imposed by spasticity can further limitmovement over time. In the face of deteriorating function in any type of movement, othersymptoms of neurologic change must be ruled out. A properly fitted wheelchair, proper braces,and modifications to the patient's environment can improve access to normal activities of dailyliving and improve his function in daily life. The primary physician must ensure that someone(physical therapist, rehabilitation specialist, orthopedist) is screening for secondary orthopediccauses of increased disability; utilizing physical therapy, exercise, and proper equipment toprevent their occurrence; and properly treating them when they arise.
13. Can Brian's communication abilities be improved?
Probably. There are many steps in a proper communication assessment and rehabilitation plan.
First, visual and hearing ability must be carefully documented. Strabismus and amblyopia,refractive errors, retinal pathology, and cortical processing disorders and field cuts are all morecommon in children with cerebral palsy than in the general population. Global or frequencyspecific hearing loss must be treated where present. Careful non-verbal cognitive testing has notbeen done in this patient. Different types of receptive aphasia are possible in cerebral palsy andare addressed differently in speech therapy. Expressive aphasia must be differentiated fromdysarthria. Access to sign, picture boards and at times sophisticated computer equipment canincrease expressive communication abilities to age appropriate levels. At very least the primaryphysician must recognize that cognitive and communication abilities may be far ahead of apatient's motor abilities.
Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
The Complex Child
Case Authors:
Case Advisor:
Brian is a fourteen year-old boy who presents for his first visit to your primary care office. He has moved from out of state and carries a diagnosis of “cerebral palsy.” You walkinto the room and see a well-groomed adolescent boy seated in a manual wheelchair, laughing athis baby sister who is making faces at him from their mother’s lap. You begin the visit by askingBrian’s parents what their major concerns are for the visit. Brian's parents state that they aremost worried about his growth and, ".would like something done about it." They also reportthey are concerned about school placement. After acknowledging these concerns, you go on toobtain the following history.
Brian was born at term after a “wonderful, easy” pregnancy with no complications at delivery. He failed to meet motor milestones in the first year. At fifteen months, he had poorhead and trunk control. His mother says, “They’ve done every test in the book and they’venever found anything. All they can tell me is he’s got C.P.” She tells you that he has had manyepisodes of pneumonia and is treated with albuterol for wheezing. He has had “lots” oforthopedic surgery. He has always been small and has gained “only a pound” in the past year.
He needs assistance to eat and currently takes an hour to eat each meal of pureed table food withmilk by spoon and by bottle. He has difficulty swallowing and gags and coughs frequentlyduring feeding. He also has “constant” drooling and significant constipation.
His mother reports that Brian's motor abilities are extremely limited. He cannot completely control his head and cannot sit independently. Brian has a history of scoliosis andwears a soft "jacket" brace. His wheelchair is seven years old. Mrs. Smith tells you that “foryears” Brian has been mainstreamed in the local public school. The other kids in his class were“great” and he always had kids taking him to ball games. His mother thinks he’s been getting PT,OT and speech therapy but does not know how he is performing academically and does not thinkhe’s had any recent testing.
While Brian’s had multiple hospitalizations in the past, he has been fairly healthy over the last several years and has not been hospitalized for three years. His only medication isalbuterol nebulizer treatments on an as needed basis. He has had no immunizations since infancyfor no clear reason.
Brian can speak but is difficult to understand. You note that he appears to understand much of what you say to him. Brian's father reports that Brian enjoys watching baseball andhockey and that Brian reacts appropriately during games. Brian's attention span appears normalfor age. Brian is able to gesture towards objects and looks up for "yes" and down for "no.” Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
The Complex Child
Amazingly, the office staff is able to locate the records from Brian’s previous pediatrician who has prepared a detailed summary of his prior work-up. At the time of his presentation at 15month he had a normal head CT, normal thyroid function tests, normal amino acids, and normalnerve conduction studies. A later MRI revealed mild lateral ventriculomegaly. Complete familyhistory was non-contributory. There was no history of recurrent emesis, severe dehydration,serious intercurrent illnesses, hypoglycemia, or ketosis to suggest a metabolic disorder. Therewas no history of blood group incompatibility or jaundice suggesting kernicterus. Multipleconsultations with child neurologists, geneticists, and metabolism specialists have not led to aunifying diagnosis. Brian was diagnosed with dystonic quadriplegic cerebral palsy as a matter ofexclusion.
His surgeries have included bilateral derotational osteotomies of the hips at 8 years, hamstring, adductor, heel cord lengthening at 6 years and tonsillectomy and adenoidectomy at age4. His weight 18 months prior to presentation is listed as 26.5 kg. His growth parameters havebeen persistently below the 5th percentile and his weight for height has fallen below the chart overthe past 3 years.
On physical examination Brian appears to be alert and calm seated in his wheelchair. The brakes appear rusted and he appears uncomfortable in it. He is able to answer yes/no questionsappropriately without failure. He is oriented to date, time and place. Length is 147 cm. Armspan is 150 cm. Weight is 27 Kg. Head circumference is normal (25 %). HEENT examination isremarkable for a normal head circumference and cranial shape. Brian's face is long and thin. Hebreathes through his mouth with poor dentition and malocclusion. Excessive calculus and mildcaries are noted. Cranial nerve examination reveals bilateral facial diplegia and drooling. Somestridor is noted with differing head positions. Gaze is conjugate in all directions. Chestexamination is clear with the exception of a systolic ejection murmur. There is a moderatescoliosis to the right. Abdominal examination reveals hard stool in the left lower quadrant.
Extremity examination reveals fixed contractures of the hips and knees. Skin examination revealschronic inflammation of the perineum. Neurologic examination reveals normal orientation toyes/no questions. Cranial nerve examination is noted above. Resting muscle tone is increasescentrally and distally but is very variable with changes in position and excitement. No restingtremor is seen. A marked intention tremor is seen with volitional movement. Head control isincomplete. Brian cannot sit unsupported. He can reach toward objects but not grasp them. Attimes when he turns his head to the right, his right arm and leg extend uncontrollably. Deeptendon reflexes are increased with spreading to adjacent muscle groups. After the exam, you askif Brian understands "more than some people think he does", his parents said that they "hadwondered if he could communicate better but thought that he could not because they were toldthat he was 'retarded.'” Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
The Complex Child
Epilogue
You administer tetanus, measles mumps rubella, polio boosters and influenza vaccine accordingto standards of routine healthcare and begin a Hepatitis B series. You place a PPD. You obtain acomplete blood count, serum calcium and albumin levels to begin to assess Brian's nutrition.
Brian was referred to a local dentist who successfully cleaned his teeth without anesthesia.
However, anesthesia will be required to fully correct decay and malocclusion. A three-day diaryand nutrition consultation revealed inadequate calorie and calcium intake. You began oralsupplementation with 35 Kcal/oz formula covered under prior approval from Medicaid and acalcium containing antacid. A speech therapy evaluation revealed safe swallowing with thickenedliquids and purees, but aspiration with thin liquids and crunchy solids. The speech therapist ishelping the family alter meal preparation to offer these textures. You will check on weight gain inmonthly intervals and are hoping for a twice-normal weight gain velocity for age over a six monthperiod. An orthopedist and physical therapist are ordering proper braces and seating devices toenhance positioning during mealtimes and eventually during communication training sessions. Anorthopedist and physical therapist are ordering proper braces and seating devices to enhancepositioning during mealtimes and eventually during communication training sessions. Youobtained a contact number for an augmentative communication center in a bordering state fromExceptional Parent Magazine and an internet search on the World Wide Web and plan toencourage the parents to attend. You learn that a hearing test and visual field testing is necessarybefore an appointment is scheduled. Cognitive testing will be done at the first session.
You find on further questioning that the family is concerned about Brian's sixteen year old sisterwho is spending less and less time at home and refusing to have friends visit her at home. Asecond appointment is made for her.
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What Should I Do Now?
Handout #1 - CEREBRAL PALSY
Definition: Cerebral palsy (CP) represents a spectrum of neurodevelopmental syndromes due to a
non-progressive insult to the developing brain that may manifest as deficits in the motor, cognitive,
sensory, and other areas. Though the underlying insult is static, the presentation may change over
time.
Incidence: 2-3/1000 live births (about 1/2 are premature)
Prevalence: 100,000 patients under 18 years in US
Annual cost: $5 billion per year (199? $’s)
Survival: 30-year survival 87%
TYPES OF CP(1) Spastic or “pyramidal” Cerebral Palsy (65% of all CP) is due to an upper motor neuron defectand so presents with increased tone, clasp-knife, increased deep-tendon reflexes, pathologicalreflexes and spastic weakness.
Spastic Cerebral Palsy is further divided topologically by the limbs most affected.
• Hemiplegia: (30%): one side of the body; arm generally affected more than leg.
• Quadriplegia: (5%): all limbs affected; legs more affected than arms • Diplegia (30%): lower extremities more involved than upper extremities • Double hemiplegia: all 4 extremities, upper extremities more involved than lower • Monoplegia: one extremity, usually upper • Triplegia: One upper, two lowers; either hemi+di, or variant of quad (2) Dyskinetic Cerebral Palsy (19% of all CP) generally involves the basal ganglia and ischaracterized by involuntary movements, and fluctuating muscle tone. Tone is often lower (evenhypotonic) when the child is sleeping. Tone also varies while awake.
Dyskinetic Cerebral Palsy is further divided by type of movement difficulty into: • Athetoid: characterized by chorea (random, jerky motions) and athetosis (slow, writhing • Dystonic: characterized by rigid posturing of trunk and head (3) Ataxic Cerebral Palsy involves injury to the cerebellum and is characterized by difficulty inbalance and positioning the body in space.
Etiology:
It is important to always look for a cause since it is not uncommon for other neurological disorders (e.g., Smith-Lemli-Opitz syndrome, spinal cord disorders or chromosomalabnormalities) to initially be diagnosed as cerebral palsy. However, the etiology of CP often isdifficult to determine. Historically, birth injury was often blamed, but birth injury causes only 8-12% of CP In term babies the cause is generally prenatal defect or insultIn premature babies the cause may be pre- or peri-natal 1) Periventricular Hemmorhagic Infarction: Large, primarily unilateral hemorrhage in
periventricular white matter. Clinically common symptoms include hemiparesis, lower
extremity>upper extremity predominantly involved + intellectual deficits. Incidence is
decreasing.
2) Periventricular Leukomalacia: In contrast, incidence of PVL is not decreasing. It
presents with bilateral, symmetric, non-hemmorhagic lesion in PVL. Clinically: “spastic Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
diplegia” weakening of all extremities but lower>upper. Intellectual deficits in 25-50% maybe related to more diffuse white matter injury.
1) Hypoxic Ischemic Encephalopathy: 12-24% of term infants with CP.
2) Vascular lesion (venous preterm, arterial in term) presents 4-9 mo of age. Cause 90% of 3) Brain Malformations – Cause the remaining 10% of Hemiplegias Management:
1) Improve functional status: think school, home, mobility, communication
2) Help parents
3) Coordinate issues
Associated problems: -
Referrals:
• Ortho: Anyone with decreased range of motion, • Physiatry: to assess function and for spasticity • Neurology: for diagnosis, seizure management, • GI: for issues such as reflux, dysphagia, • (see attached list of other specialtie Oral Medications:
Baclofen (Lioresal):A GABA analog inhibits spinal mono and polysynaptic reflexes.
Diazepam (Valium): Valium works in CNS to enhance inhibitory GABA effects.
Clonazepam (Klonopin): Similar effects to valium.
Dantrium Sodium (Dantorlene): Acts direcly on skeletal muscle.
Tizanidine (Zaniflex); Approved in 1996 for adults.
Nerve and Muscle Blocks:
• BOTOX (botulinum type A toxin): Inhibits acetylcholine release at the neuromuscular junction
making the muscle weaker temporarily.
• Phenol injections: Injected around “motor point” where nerve branch enters muscle. Causes
demylenation which lasts 4-12 months.
Therapeutic Elecltrical Stimulation (TES): Electrodes deliver low level electrical stimulation during the
night to weak and non-spastic antagonist muscles. A growth in muscle bulk, decreased tone and hyperreflexia, and
improved function can be seen.
Intrathecal Baclofen Pump: Much smaller doses can be used intrathecally to get good effects without as many
side effects. Dosing can be adjusted non-invasively.
Dosrsal rhizotomy: Selective and permanent disruption of 1-alpha afferent input to the cord. Results are variable
and best used in carefully selected patients (pure spasticity, adequate trunk and leg strength, age 3-8, spontaneous
forward locomotion, absent primitive reflexes, adequate cognitive skills, social factors).
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What Should I Do Now?
Module Evaluation
For presenters to fill out before the teaching session A. I consider myself
1.A nationally
2. A locally
4. to have learned 5. Not sure
B . I spent approximately _______ minutes preparing for teaching this topic.
C . Of the time I spent preparing to teach this topic, I used material provided to me as part of the Serving the Underserved
Curriculum
1. 100% of the time
2. 75-99%of the time
3. 50-74% of the time
4. 25-49% of the time
5. <25% of the time
D. How appropriate were the educational objectives?
1. Excellent
3. Average
5. Not sure
E. How appropriate were the tutor notes?
1. Excellent
3. Average
5. Not sure
F. How appropriate were the references?
1. Excellent
3. Average
5. Not sure
G. If your answer to any of the above questions (except A) was 3, 4 or 5, please comment.
Please feel free to write further comments on the back of this sheet.
Thank you for taking the time to fill out this evaluation.
*This material was adapted from that created by Janet Hafler, Ed.D.
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What Should I Do Now?
Module Evaluation
(For Presenters to use after the teaching session) Your responses will help us refine and develop this case.
A. Please rate the overall quality of this material as a stimulus for learning.
1. Excellent
3. Average
5. Not sure
B. Please rate the classes participation in the learning
1. Excellent
3. Average
5. Not sure
C. How comfortable were you with case based teaching
N o t a t A l l
Very Much
Prior to this teaching session
During the teaching session
After the teaching session
D. Please list how long you spent on this topic, and how the time was devided
Total Time
______ minutes
Time spent on case discussion
______ minutes
Please describe how you spent the rest of the time
E. Please Rate each of the following
Excellent
The Educational Objectives
The Case Vignette
The Tutor Guide, including guiding questions
Reference List
Handouts
Audiovisual Materials
If you answered 1-3 on any of the above, please comment further F What were the cases strengths
G What were the cases weaknesses
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What Should I Do Now?
H What is the single most important thing that you learned from the case discussion?
Case Evaluations
1. Do you think facts or data should be added?
If yes, what should be added?
Do you think facts or data should be deleted? If yes, what should be deleted?
J. Tutor notes evaluation
1. Did you use the tutor notes?
If no, why not?
2. What were the tutor notes strengths?
3. What were the tutor notes weaknesses?
4. How would you suggest improving the tutor
5. Do you think facts or data should be added to
the tutor notes?
If yes, what should be added?
6. Do you think facts or data should be deleted
from the tutor notes?
If yes, what should be deleted?
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What Should I Do Now?
K Slide Evaluation
1. Did you use any of the slides?
2. How would you suggest improving the slides?
3. Do you think more slides would be useful?
If yes, what should be added?
4. Do you think there are slides that will never be
useful?
If yes, what should be deleted?
L Did you use any other materials
If yes, what other materials?
If supplied by the Serving the UnderservedProject, how would you improve the material M. What did you as a teacher learn about this topic?
Please feel free to write any further comments on the back of this form
Thank you for taking the time to fill out this evaluation.
*This material was adapted from that created by Janet Hafler, Ed.D.
Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
What Should I Do Now?
Module Evaluation
Your responses will help us refine and develop this educational material. The person completing thisform is: A. What is the single most important thing you learned from the case discussion today.
B. Please rate the overall quality of this case as a stimulus for learning.
1. Excellent
3. Average
C. The facilitator
N o t a t A l l
Very Much
Encourages student direction of teaching
Stimulated interest in the subject matter
Encouraged Group Participation
D. I consider the facilitator
1.A nationally
2. A locally
4. a teacher who
5. Not sure
E. Please rate each of the following components of the teaching session (N/A for not applicable)
Excellent
Case Vignette
Case Based/Learner Centered Format
Handouts/Supplemental Materials
Teacher/Facilitator
F. Do you think information should be added?
3. Not Sure
If yes, what should be added?
G. Do you think information should be deleted?
3. Not Sure
If yes, what should be deleted?
H. Comments
Please feel free to write any comments on the back of this sheet.
Thank you for taking the time to fill out this evaluation.
*This material was adapted from that created by Janet Hafler, Ed.D.
Supported by a grant from The Maternal and Child Health Bureau. Thesematerials may be freely reproduced and used, but may not be modifiedwithout written consent of the authors.
Capute, Arnold J. and Accardo, Pasquale J. “Cerebral Palsy: The Spectrum of MotorDysfunction” in Arnold J. Capute and Pasquale J. Accardo, eds. Developmetnal Disabilities inInfancy and Childhood, 2nd Edition Volume II: The Spectrum of Developmental Disabilities.
Paul H. Brookes Publishing Co. Baltimore, 1996.
Dormans, John P. and Pellegrino, Louis Caring for Children with Cerebral Palsy: A TeamApproach. Paul H. Brooks Publishing Co. Baltimore, 1998.
du Plessis AJ, Volpe JJ Perinatal brain injury in the preterm and term newborn. Curr OpinNeurol 2002 Apr;15(2):151-7 Leonard, Jane Faulkner, Cadenhead, Sherri L., and Myers, Margaret. Keys to Parenting a Childwith Cerebral Palsy. Barron’s Hauppage, NY, 1997.
Pellegrino, Louis “Cerebral Palsy” in pp499-528 in Mark L. Batshaw, ed. Children withDisabilities, 4th Edition. Paul H. Brookes Publishing Co. Baltimore, 1997.
Sulkes SB MD's DD BASICS: identifying common problems and preventing secondarydisabilities. Pediatr Ann 1995 May;24(5):245-8, 251-2, 254

Source: http://www.servingtheunderserved.org/complex.pdf