Cerebral Palsy Care Guidelines

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1 Jean F. Koops, M.S.N., A.P.R.N., B.C., P.N.P. Wendy Burdo-Hartman, M.D. Nancy Dodge, M.D. Contributors: Harold Conrad, M.D.; Tim Conroy, M.D.; Patrick Droste, M.D.; Michael Forness, M.D.; John Kosta, M.D.; Beatrice Murray, M.D.; Nicholas Newman, D.O.; Debra O Donnell, M.D.; John Schuen, M.D.; Karen Vanderlaan, M.D.; Jane Katerburg, S.L.P, M.A., C.L.L.; Lisa Howard, P.T., P.C.S.; Nora Saenz, O.T.R. Revised:

2 Table of Contents Cerebral Palsy Care Guidelines... 1 I Definition... 1 II Purpose of Cerebral Palsy Guideline III Key Areas Addressed by Cerebral Palsy Guideline... 1 IV Management: A History The complete medical history includes: Developmental History Social History Educational/Therapy History....2 B Physical Exam Growth Parameters Vital Signs Complete Physical Exam...3 C Management of Associated Problems in Children with Cerebral Palsy Orthopedic Spasticity Neurologic Pulmonary Gastrointestinal GU Problems Skin Vision Hearing Dental Speech and Communications Pain Behavioral Problems Social Problems Sleep Problems Educational Planning Financial Issues...16 V Summary ii

3 Box I: Abnormal Signs Associated with Cerebral Palsy Box II: Frequently Ordered Equipment for Children with CP Box III: Early Intervention Services Box IV: First Aid for Seizures Box V: Hydrocephaly (Congenital or Acquired, Communicating or Obstructive) Box VI: Assessment Tests Relating to GERD Box VII: Guidelines for Pediatric Medical Home Providers Box VIII: Resources for Parents and Professionals Box IX: CP Publications for Parents Box X: Definitions Box XI: Diagnostic Codes Box XII: References Table I: Measuring Children with CP Segmental Measurements Table II: Primitive Reflexes Table III: Guidelines for Prescribing Drugs for Children with CP and Movement Disorders Table IV: Monitoring Antiepileptic Medications Table V: Medications Used for Drooling Table VI: Medications Used for GERD Table VII: Medications for Constipation Table VIII: Common Potential Contributors to the Experience of Pain in Children with CP Table IX: Medications Used to Help Sleep Issues Table X: CP Guidelines Birth to 12 Years iii

4 Cerebral Palsy Care Guidelines I Definition Cerebral Palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems. (2006 Executive Committee report). II Purpose of Cerebral Palsy Guideline To provide effective chronic care management for children with cerebral palsy and their families. Management is primarily aimed at improving and maintaining functional abilities, preventing complications, and helping the child and family maximize their potential to participate in every day life. III Key Areas Addressed by Cerebral Palsy Guideline To assist the medical home in the management of problems encountered in a child with Cerebral Palsy (CP). To reduce delays in treatment and minimize loss of function and potential. To encourage family-centered care. To facilitate decision making for timely referrals to specialists. To develop timelines for laboratory evaluations and x-rays. To enhance the communication system between consultants, hospitals, schools, agencies, families, and the primary care provider. To enhance effective utilization of resources for children with cerebral palsy. To improve record sharing with families. 1

5 IV Management: Routine care should follow the AAP guidelines for standards of preventative care. A History 1 The complete medical history includes: Prenatal and perinatal birth events. Diagnostic studies including CTs, MRIs, ultrasounds, and lab data. Medications (OTC, PRNs, prescriptions). Immunizations and allergies. Surgeries, hospitalizations and specialists involved. Family medical history. Review of systems. 2 Developmental History Timing and status of fine and gross motor skills, and of receptive and expressive language development. Personality and behavior description of the child, from the parents perspective. Self injurious behaviors. 3 Social History Family living arrangement, community resource involvement, financial burden, financial resources (including insurance coverage). Durable Medical Equipment (DME) provider, nursing agency, pharmacy. 4 Educational/Therapy History Current educational resources being utilized including: early intervention programs, special education involvement, Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy (SLP), Public Health Nurse (PHN) or Dietitian (RD) usage, and skilled nursing involvement. 2

6 B Physical Exam 1 Growth Parameters Height, weight, head circumference, height for weight or body mass index. (Document as to how height is obtained). See Table I, Measuring Children with CP Segmental Measurements. Should be charted using syndrome specific growth charts, if applicable Click to go to the Growth References for Children with Quadriplegic Cerebral Palsy page on the Kennedy Krieger Institute Web site. A special note made relating to microcephaly, macrocephaly, or plagiocephaly 2 Vital Signs Temperature, pulse, respirations, and blood pressure Obtain pulse oximetry if on oxygen. 3 Complete Physical Exam A complete physical exam should be performed with identification of any physical characteristics associated with Cerebral Palsy. Musculoskeletal assessment should include a comprehensive assessment of motor functioning, including hypotonicity, hypertonicity (spasticity), and weakness of proximal and distal muscle groups. The ability to perform gross motor movements should be assessed as well as assessing gait for ataxia or dysmetria, dystonia or disequilibrium. The ability to perform fine motor movements with age appropriate testing needs to be assessed. The position of limbs at rest and with motion should be observed. Contractures and rigidity should be assessed and documented, as well as limb asymmetry and muscle mass. The neurological assessment should include extensor and flexor tone. Deep tendon reflexes need to be assessed for hyporeflexia, hyperreflexia, or clonus (sustained or unsustained). The babinski response and persistent primitive reflexes are commonly seen. See Table II, Primitive Reflexes. Special attention needs to be paid to any skin breakdown. Note child s visual tracking, hearing. Cranial Nerves II XII status. See Box I, Abnormal Signs Associated with Cerebral Palsy. 3

7 C Management of Associated Problems in Children with Cerebral Palsy 1 Orthopedic a. Careful examination of extremities for contractures and other bony abnormalities is necessary at each physical exam. Physical examination is not always reliable. An anteroposterior X-ray of the pelvis is required for diagnosis. All children who cannot walk more than 10 steps by the age of 30 months should have a hip x-ray to measure migration percentage of each hip, and this should be repeated every 6 12 months until the age of 7 years, or when further deformity is unlikely. Spine X-rays should be considered for all children in Gross Motor Function Classification System (GMFCS) groups IV to V who are unable to stand by the age of 5 years, at 5 years and at 10 years as a minimum. Click to open the Gross Motor Function Classification System for Cerebral Palsy document from the CanChild Web site. b. Children with cerebral palsy need regular monitoring for scoliosis (64%) and kyphosis. c. All children with cerebral palsy with abnormal hip or spine exam or radiography need a baseline evaluation by an orthopedic surgeon. d. If the child is ambulatory, gait should be assessed. Computerized gait analysis can be provided by a gait laboratory and is helpful in clinical decision making. e. The ordering of specialty durable medical equipment such as walkers, braces, standers, and wheelchairs, should be considered early and throughout the child s life, but should be done in conjunction with the child s therapist, orthotist, orthopedic surgeon, physiatrist, and family. See Box II, Frequently Ordered Equipment for Children with CP. 2 Spasticity Muscle spasticity can be a significant source of functional disability in a child with CP. Treatment planning is centered on improving function, comfort, and care; reducing pain; and preventing or correcting deformity. a. Therapy is central to any treatment plan. Physical therapy Occupation therapy Speech therapy Oral Motor therapy Other therapies See Box III, Early Intervention Services. 4

8 b. Oral medication agents have the advantage of easy use but the disadvantage of systemic side effects. Baclofen (Lioresal) Carbamazepine (Tegretol) Clonazepam (Klonopin) Diazepam (Valium) Dantrolene (Dantrium) Tizanidine HCL (Zanaflex) See Table III, Guidelines for Prescribing Drugs for Children with CP and Movement Disorders. c. Referral for advanced spasticity management: Neurolysis or neuromuscular blockade such as Botox or Phenol. Intrathecal Baclofen (ITB) Click to go to the Intrathecal Baclofen Therapy in Children article on the Medscape Web site. (Note: You must be a member of the medscape.com Web site to login and view this article.) Warning: Patients with ITB pumps should be warned to seek medical treatment at the first sign of pump or catheter failure. Symptoms may include an increase in spasticity, itching or fever. Surgical, i.e., selective dorsal rhizotomy (SDR) Refer to a spasticity clinic, orthopedic surgeon, pediatric physiatrist, or a pediatric neurosurgeon, depending on community resources, and anticipated needs of child. Click to go to the Advanced Management of Pediatric Spasticity Program page of the Mary Free Bed Web site. 3 Neurologic a. Seizures Data from studies involving 1,918 children have found that on average 43% (35% to 62%) of children with cerebral palsy develop epilepsy. Children with CP have a higher incidence of epilepsy than the general population, with onset within the first year of life (47% versus 10%), history of neonatal seizures (28% versus 3%), status epilepticus (16% versus 1.7%), need for poly-therapy (25% versus 3%) and treatment with second line anti-epileptic medication (31% versus 90%). Sixty-six per cent of children with CP who have abnormal neuron-imaging studies are more likely to have epilepsy. Generalized seizures are the most common (66%). Developmental disabilities are the most prevalent 7, 59, 71 symptomatic cause of seizures in children. Recommendations: An EEG should be obtained when a child with CP has a history or examination features suggesting the presence of seizures or an epileptic syndrome, 5

9 (Level A; Class I and II evidence). Routine review of antiepileptic drugs should occur at each maintenance visit. Collaboration with child s neurologist is necessary for seizure management. Safety precautions for seizures should be reviewed with parents regularly. See Box IV, First Aid for Seizures. See Table IV, Monitoring Antiepileptic Medication. b. Hydrocephalus Persistent ventricular enlargement or persistent parechymal echodensities carry a 50% risk of CP, and large bilateral cysts in the periventricular white matter carry a risk of 75% to 95%. 1) 2) 3) 4) CT scan should be ordered as soon as soon as possible if concerned. Safety precautions/risks, and danger signs for children with hydrocephalus should be reviewed with parents. See Box V, Hydrocephaly (Congenital or Acquired, Communicating or Obstructive). An immediate referral to a neurosurgeon should be made if hydrocephalus is newly diagnosed. A record of the shunt, and if possible, a drawing and explanation of the shunt should be included in the chart. c. Neuroimaging is recommended in the evaluation of a child with CP if the etiology has not been established. (Level A, Class I and II evidence). MRI is preferred to CT scanning because of the higher yield of suggesting etiology and timing of insult leading to CP. (Level A, Class I and III evidence). Periventricular leukomalacia (PVL) is the predominant pattern of brain injury that later manifests as spastic CP with variable degrees of cognitive impairment. The existence of PVL is the strongest and most independent risk factor for the development of CP occurring in up to 80-85% of infants with PVL (Perlman, Risser & Broyses, 1996). d. Intraventricular bleeding in pre-term infants is associated with spastic diglegia, affecting motor tone and control in the lower extremities more than the upper extremities. More than 50% of children with CP walk by 3 years of age, often with the assistance of orthoses, ambulation aids such as walkers or crutches. Since the advent of neuroimaging, it has become more apparent that children with CP may have congenital brain malformation. Data from a group of 1,426 children found that 7% who had a CT scan, and 12% who underwent a MRI had major brain malformations such as lissencephaly, schizencephaly, or polymicrogyria, or pachygyria. 6

10 e. Genetic and metabolic disorders may (2%), on rare occasions, masquerade as CP. Observation over time indicates that neurological symptoms are progressive and generally severe and should suggest the child does not have CP which mandates further evaluation. 4 Pulmonary Respiratory illness is a frequent cause of mortality and morbidity in children with severe CP. Alterations in positioning caused by abnormal muscle tone, spasticity, immobility, scoliosis, and contractures can affect pulmonary function and place children with CP at high risk. a. Pneumonia Pneumonia is the leading cause of death in children with severe CP, accounting for between 30% and 50% of all deaths. Much of this is thought to be secondary to aspiration of food, saliva, or gastric contents. Frequent aspiration can lead to infections, pneumonia, and damage of the pulmonary defense system. Children who aspirate during feedings need a referral to a pediatric pulmonologist, and a clear plan to avoid repeated aspiration events. This most likely includes dietary changes but may require an alternative source of nutrition (i.e., Gastrostomy tube with or without a Nissen fundoplication). b. Restrictive Lung Disease Children who have severe scoliosis (64%) or other spinal deformities may need pulmonary function studies. These conditions make it difficult to position the child in a safe swallowing posture. c. Chronic Lung Disease of Infancy (CLD) Children who have CLD and are discharged on supplemental oxygen, should have the following assessments performed regularly until they are off of supplemental oxygen: an interim history, measurement of weight, pulse oximetry reading at rest and during feeding. Consider RSV prophylaxis. Children discharged from the NICU on supplemental oxygen should also consult with a pulmonologist. d. Dysphagia The incidence of dysphagia in children with CP is estimated to be about 40%. Children with CP experience significant feeding and swallowing problems during the first 12 months of life. This finding often precedes the diagnosis of CP. Symptoms include gagging, a wet vocal quality or fatigue with feedings. Dysphagia symptoms can be managed utilizing intensive therapy, advising food consistency management and positioning techniques. Dysphagia team members should include a speech/language pathologist, a dietitian, and an occupational therapist. The degree of problem and management frequently requires a video swallow study. 7

11 e. Obstructive Sleep Apnea (OSA) Children with CP are at a higher risk for developing OSA. Children who snore or show signs of sleep apnea will need a careful history with a careful upper airway assessment. A referral to a pediatric pulmonologist or an ENT should be considered. Frequently a sleep study is indicated. Surgical management such as an adenoidectomy or tonsillectomy may be recommended for initial surgical treatment. f. Drooling (Sialorrhea) Drooling can be a severe problem in children with CP. Drooling can lead to the aspiration of secretions. Consequences of drooling include: skin excoriation and breakdown, yeast infections, unpleasant odor, increased oral and perioral infections, hygiene problems, dehydration, and social isolation. Children with CP who drool have poorer functional skills, lower nonverbal intelligence scores, more severe oral involvement and a tendency to swallow less frequently than children who do not drool. Management: 1) 2) 3) Oral Motor therapy. Oral medications: Scopolamine, Robinul or Levsin See Table V, Medications Used for Drooling. Referral for additional management for: a) Surgical intervention. (Salivary gland ablation, saliva duct ligation or duct rerout- ing.) b) Botulinum A Toxin (BTX-A) BTX-A is injected into the parotid and submandibular salivary glands, This works both at the neuroglandular as well as the neuromuscular junctions. Several studies have shown an increase in dental caries after surgical intervention. It has been suggested that a team consisting of an otolaryngologist, speech therapist, pulmonologist, and a pediatric dentist, collaborate with the physician in the care of a child who drools. 5 Gastrointestinal Damage to the developing CNS may result in significant dysfunction in the gastrointestinal tract. The earlier adequate nutritional management of children with cerebral palsy is initiated, the more readily the nutritional deficits will reverse (Sanders et al, 1990; Amandson et al, 1994). a. Oral Motor Dysfunction / Feeding Problems Oral motor impairments occur in 89% of children with CP. The development of oral motor skills mirrors general neurological maturation and requires the coordination of the movement of a total of 31 pairs of striated muscles in the mouth, pharynx, and esophagus by 6 cranial nerves, the brain stem and the cerebral cortex. Growth and neurologi- 8

12 cal maturation play a large role in feeding development, but learning from experience is crucial. Nutritive sucking begins around 32 week s gestation and matures around weeks gestation. Poor control of posture, uncoordinated movements of upper limbs, lack of independent mobility, visual, hearing and communication problems all contribute to feeding difficulties. Oral motor dysfunction has been shown to be associated with poor growth, poor nutritional status and poor health status. A referral for an oral motor evaluation may be necessary to evaluate chewing, sucking, or swallowing deficits. Oral aversions can appear, especially if a child has had a history of a Nasogastric (NG) or a Nasojejunal (NJ) or Oral gastric (OG) feedings. Oral aversion can also occur if there has been a negative intraoral experience, especially choking and/ or aspiration. b. Poor muscle tone in the neck, shoulders, and trunk (axial hypotonia) can impede the process of eating. A child may need studies including a video fluoroscopy swallowing study (VFSS) to assess a child s swallow and determine if aspiration occurs. An upper GI may be needed to evaluate anatomy and may also capture reflux. A normal upper GI does not rule-out reflux. A 24-hour PH probe monitoring may be used to evaluate for reflux or endoscopy may be required. See Box VI, Assessment Tests Relating to GERD. c. Nutrition Under Nourishment Around one-third of the children with CP (13-52%) have severe difficulty eating and drinking and are significantly undernourished. Manifestations are anemia and hypoproteinemia as well as decreased zinc, magnesium and phosphorous. A large proportion of patients develop gastrointestinal symptoms, such as vomiting or regurgitation, feeding difficulties and failure to thrive. Children, who show poor weight gain, or failure to thrive, should have a specific follow-up plan documented in the chart. A detailed dietary history should be obtained at each maintenance visit. For complicated feeding issues, a feeding therapist and a dietary evaluation may be indicated. It is important to refer to a dietician with experience with children with CP. Energy recommendations for children with CP differ from recommendations for typically developing children and depend upon the specific medical conditions or degree of functional impairment. Input from a trained pediatric dietician may be helpful. A child, who is having problems with poor weight gain or failure to thrive and is unresponsive to medical intervention, may need to be considered for a surgical intervention. For GERD, a Nissen fundoplication is necessary. For weight issues, a gastrostomy tube is needed. Candidates for a gastrostomy tube are infants or children who: Require NG tube feeding for longer than three months. 9

13 Require an inordinately long time to feed (>30 minutes). Have inadequate weight gain in spite of dietary interventions. Have unsafe swallow on VFSS, or significant risk of aspiration of food during eating. Nutritional concerns may be life long. The earlier the need for adjunctive feeding is recognized, and instituted, the better the overall outcome for the child. The presence of a seizure disorder substantially increases the risk of developing Gastroesophageal Reflux Disease (GERD) that may indicate undergoing a prophylactic antireflux procedure at the time of the gastrostomy tube placement (Harrington, Brand, Edwards 2004). d. Gastroesophageal Reflux Disease (GERD) Cerebral palsy patients develop GERD with more frequency (26-91%) than the general population (5-7%). The major problem is recurrent vomiting (70%) and malnutrition (63%). GERD can be attributed to various factors such as vertebral column abnormalities, prolonged supine position, delayed gastric emptying time, gastrostomy, or psychogenic factors. Other gastrointestinal symptoms such as nausea, abdominal distension, anorexia, early satiety, and constipation (52%) are also common in children with CP. In some cases recurrent vomiting may be neurological. The mainstay of the management of GERD is more frequent smaller-volume meals. Insuring that daily requirements are met, this approach alone may be successful. In neurologically impaired children unresponsive to conventional anti-reflux treatments, a course of a highly restricted diet with an amino-acid based formula may bring an immediate and sustained improvement. (JPGN, 35, 2002). For severe GERD and in association with other management methods, continuous feeds by NGT, gastrostomy or jejunostomy may be required. See Table VI, Medications Used for GERD. Medications used for gastrointestinal motility problems/slow gastric emptying. Erythromycin (EES) Metoclopramide (Reglan) Experience has shown that medical modes of treatment are less effective in children with disabilities, who often require surgical intervention with a Nissen fundoplication. e. Constipation/Encopresis Constipation occurs in 25% of children with CP. Constipation is another manifestation of a probable defect in neurologic control of the gut. Recognition and effective management is necessary. Constipation is exacerbated by medication, immobility, and poor fluid intake. Constipation is associated with early satiety and is an additional reason for poor feeding and contributory to under nutrition. 10

14 Inadequate fiber intake is one amiable causative factor. Consider Celiac disease in severe cases of constipation with a total IgA and tissue transglutaminase. Low muscle tone or spastic abdominal muscles can prevent contractility and pressure to adequately advance and empty bowel contents. A lack of exercise and the inability to sense signals of a bowel movement can contribute to the problem. Bowel programs are often a routine part of the care and should be addressed in maintenance visits. Medications: milk of magnesia, senna, miralax, lactulose. See Table VII, Medications for Constipation. f. Obesity Obesity although uncommon, can occur in this population. The help of a dietitian in planning reasonable food intake is important. School coaches can also be involved in special athletic programs for persons with handicaps to help with cardiovascular fitness and energy expenditure. 6 GU Problems Bladder function should be assessed. The child with CP is likely to achieve continence later if at all. Resources for the diapers of an older child, including diapers for swimming are available online: Click to go to Diapers Online Web site. Click to got to SwimOutlet Web site. Provisions should be made for diapers if incontinent past 3 years of age. In some states diapers are a covered expense by Medicaid if the child has a need over the age of 3 years. The presence of testes in the scrotum should be ascertained in the early years. A referral to a pediatric urologist or surgeon may need to be made. Hernias are a frequent problem, particularly in males, and should be assessed at each visit. Menarche history should be reviewed. Hygiene may be a concern. Suppression of menses with contraceptives, oral or by injection may be considered. The AAP guidelines (1996) consensus states that there is a definite need to discuss sexuality in order to protect girls with disabilities from exploitation, unplanned pregnancy, or sexually transmitted diseases. 7 Skin Children with CP are at a greater risk for skin breakdown. The major problems are pressure ulcers or friction areas, especially around splints or braces. Routine monitoring at every visit needs to be done. Parents need to be taught to monitor the child s skin daily to look for the development of any areas of redness that continue more than 15 to 20 minutes following removal of the pressure source. The use of appropriate well fitting splints is extremely important, 11

15 8 Vision Vision impairments are common (26%) and their prevalence increases with decreasing gestational age. An assessment of visual behaviors in children with CP is often difficult because several problems can coexist, including ocular lesions, eye movement disorders, impaired acuity, various visual processing abnormalities, as well as attention deficits. An evaluation by a pediatric ophthalmologist within the first year of life is necessary. Vision should be checked for acuity, refractive errors (75%), strabismus (misalignment of the eyes), amblyopias (lazy eye), cataracts, nystagmus, optic atrophy, cortical blindness. Early correction of refractive errors in these children, before the neural plasticity period is finished, must be implemented. Timely access and quality of care is especially important. The PCP should document whether children who receive a diagnosis of a vision problem are receiving appropriate interventions. An ophthalmologic examination should be performed at least once yearly until the age of six. (AAP,2006). 9 Hearing Children with CP have an increased incidence (5-15%) of hearing impairment. An assessment of hearing should be done as with other newborns at birth. If there are emerging questions, a diagnostic BAER should be done in the first 3 months of life. For all infants who have risk factors for hearing loss (VLBW, kernicterus, neonatal meningitis, abnormal neuroimaging studies, severe HIE insults) who did pass the newborn inpatient screen, a diagnostic BAER should be performed by 12 months of chronological age. If they did not pass the newborn hearing screening, a diagnostic BAER should be completed within 3 months of the failed screen. If hearing loss is sensorineural (i.e., damage to auditory nerve or inner ear) rehabilitation should be started by 6 months of chronological age. If hearing loss is conductive (i.e., anatomical abnormalities and/or frequent otitis media), tympanometry can be helpful in diagnosing middle ear effusions and PE tubes may be necessary. A referral to an ENT physician may be necessary. (Joint Committee on Infant Hearing et al, 2000). See Box VII, Guidelines for Pediatric Medical Home Providers. Older children should have yearly hearing evaluations. 10 Dental Malocclusions commonly occur in children with CP as a result of orofacial muscle tone deficiencies. A child should receive an initial exam if there is any evidence of caries or abnormalities, otherwise by two years of age. Dental evaluations should continue on a six month basis with a dentist experienced with children with CP. More frequently if the child is exclusively gastrostomy fed. A sedation plan should be formed if this is necessary. 12

16 Because of difficulties with oral hygiene, it is imperative these children receive fluoride according to current recommendations. Parents should be instructed in a reasonable home dental hygiene plan and it may be necessary to provide an electric toothbrush to do this. A suction toothbrush may be necessary if aspiration is a concern. Gum hypertrophy should be assessed and treated in children who are taking medications that promote it. (Phenytoin) Sealants are recommended for teeth with enamel defects. 11 Speech and Communications 38% of children with CP have speech and language impairment. Articulation disorders and impaired speech intelligibility are usually present. Speech should be evaluated at the first sign of delay and a treatment plan developed. Problems in articulation and dysarthrias are caused by muscle tone abnormalities. Because of bilateral corticobulbar dysfunction in many CP syndromes, anarthric or dysarthric speech and other impairments related to oral motor dysfunction are common. Speech therapy should begin early at the first indication of speech problems. Speech and language therapy aims to maximize children s ability to communicate through speech, gesture, and/or supplemental means such as communication aids that enable them to become independent communicators. If normal speech that functions effectively as communication is not emerging, alternate techniques should be explored. Computers or adaptive communication devices (ACD) have allowed children with speech problems to dramatically improve their communication. Sign language can also help even the very youngest communicate their needs. Language (as opposed to speech) deficits in CP go hand-in-hand with verbal intellectual limitations associated with cognitive impairment. Hearing should be evaluated in children if there is any speech delay and as part of routine evaluation. 12 Pain Pain assessment and alleviation are a necessary part of health care for children with CP. Pain may be a problem for children with CP due, in part, to the inherent deficits associated with the disease, as well as the invasive medical and surgical procedures and rehabilitative activities children with CP undergo on a regular basis. Pain is the fifth vital sign according to the American Pain Society. There are two primary categorizations for pain: acute and chronic. Acute pain is most often caused by tissue damage from irritation, related to injury, surgery, or disease. It lasts 6 months or less. Persons with chronic pain may also experience depression, sleep disturbance, fatigue, and decreased overall physical functioning. Pain may also be associated with all the common contributors. See Table VIII, Common Potential Contributors to the Experience of Pain in Children with CP. 13

17 A multitude of pharmacological interventions specific to each problem or complications as well as non-pharmacological interventions such as distraction, relaxation training, biofeedback, and therapeutic massage (McGrath, 1990). Pain scales that can be used: The non-communicating children s pain checklist for children with neurodevelopmental disorders and severe cognitive impairment. McGarth et al (1998). The Pediatric Pain Profile. Hunt et al (2004) Pain assessment instrument for cerebral palsy. 13 Behavioral Problems Children with CP appear to have a higher (20%) incidence of ADHD than in the general population. Its presence should be sought and treated. As a result of an exaggerated and prolonged existence of primitive reflexes especially the startle reflex, infants and children with CP can over-react to the mildest stimulation. Therefore, they become tired, frustrated, irritable, demanding and uncooperative children. Children can develop self-injurious behavior (SIB). Parents need to be asked about this, and the child examined since often that will not be elicited on routine questioning. Most SIB have a function and are most responsive to behavioral modification. A functional behavioral assessment can be very helpful in the identification of the root cause of the SIB. A multi-disciplinary approach often has to be taken to check children for treatable problems such as reflux with esophagitis, constipation, dental problems, otitis media, hernia, gallbladder disease, and seizures, with any sudden onset of undesirable behavior. Discipline is important and should be consistent and developmentally age appropriate (for a child s mental age). Increased reports of depression in adolescents with cerebral palsy have also been reported. 14 Social Problems As a result of many problems associated with cerebral palsy, respite is usually an issue for parents with children with significant handicaps. For parents who wish to use it, there should be provisions for hourly or day to day respite care. Respite may be beneficial, however may be dependant on state funding and respite facilities. A plan should also include a long-term respite for family vacations and/or in case of a family illness. Religious support can also be helpful for families. Exposure to social situations should be encouraged and planned. Career planning should be initiated early so that appropriate plans can be made in their education. Discussions with families about long-term placement as the parent s age should be initiated when appropriate. 14

18 15 Sleep Problems Children with CP may struggle to initiate or maintain sleep. Central and obstructive sleep apnea can occur at a greater frequency in children with CP. Pain secondary to spasticity, GER or other problems may cause problems with sleep. A bedtime routines and setting limits is important. Evaluation may include sleep studies, swallowing studies, and PH probes. Some children will benefit from medications to assist in sleeping. Melatonin improves sleep wake cycle in children. Clonidine (Catapres) Trazadone (Nesyrel) See Table IX, Medications Used to Help Sleep Issues. Medications should be titrated slowly to avoid morning drowsiness. Ongoing assessments of side effects and efficacy should take place. Spasticity can interfere with sleep and appropriate treatment may make sleep more restorative. Intrathecal baclofen therapy for spasticity has been shown to facilitate sleep by decreasing apneic events and reducing the disturbing involuntary leg movements. 16 Educational Planning Most children with cerebral palsy live at home with their families, attend regular classrooms at their neighborhood schools, and participate in a variety of natural community activities. Evaluations for educational assistance should be made as soon as the child shows any sign of developmental delays. In Michigan, educational support is guaranteed from age 0 through 25 years. An assessment of educational placement should be made at each routine visit. At periodic intervals, a child should have psychometric testing done that is appropriate and takes into account the handicaps of the child. As the child ages an assessment for independent living needs to be completed. As adults with CP, most continue to live in community settings, but one third live at home with their parents whose ability to continue care giving may decrease as they age. Twenty per cent of adults with CP are ambulatory and 40% can walk with assistance; the remaining 40% are non-ambulatory. 15

19 17 Financial Issues It is important to assess whether they have been linked with routine financial support sources such as Supplemental Security Income (SSI), WIC, MI Child, Medicaid and Children and Youth Special Health Care Services (CYSHCS) programs. Additional programs can be made available to parents such as Make a Wish, transportation programs, and Easter Seal programs. Support groups are often helpful to families. See Box VIII, Resources for Parents and Professionals. See Box IX, CP Publications for Parents. V Summary Children with Cerebral Palsy present a special challenge to Health Care Providers because of their unique developmental and medical differences. This Clinical Practice Guideline is intended to be used as a reference guide when caring for children with Cerebral Palsy and their families. As such, the clinician s clinical judgment should supersede these guidelines. See Box X, Definitions. See Box XI, Diagnostic Codes. See Box XII, References. See Table X, CP Guidelines Birth to 12 Years. 16

20 Box I: Abnormal Signs Associated with Cerebral Palsy Delayed motor milestones Not rolling by 6 months Fisting after 5 months of age Not sitting with support by 8 months Not walking by months Discrepancies between cognitive and motor development Persistent or evolving increased or decreased muscle tone Head lag beyond 6 months of age Poor trunk control and balance Opisthotonic posturing and extensor thrusting Dystonia Early rolling or standing (especially in high risk infant: rolling is achieved involuntarily by a reflexive log roll or arching) Toe walking/scissoring Abnormal motor or gait patterns Focal abnormalities of movement, posture, tone Declaring handedness prior to 18 months Differences in functional ability of left/right extremities Clonus persisting past 12 months Persistence of primitive reflexes See Table II, Primitive Reflexes. 17

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