Cerebral Palsy - Treatment & Management

The diagnosis of CP is often triggered by developmental delays. Even if the child is only a few months old and/or if the clinician is unsure about whether there is a delay, early intervention programs will provide an initial developmental evaluation to any child at no cost to the family. In some cases, they can reassure a family that development is in the normal spectrum or, if there are delays, early intervention can begin providing developmental services. Although the benefit is difficult to prove for all children with CP, children who were born prematurely and are at risk for CP perform better cognitively if they have received early intervention services (Early intervention and premature infants: a Cochrane review).

Children younger than 3 years with suspected or definite CP should be referred to an early intervention program. Children at particular risk (e.g., those with extreme prematurity or birth asphyxia) should be referred early, perhaps even before any clear signs of delay.

In children younger than 3 years with hearing and/or vision deficits, a referral should also be made to the School for the Deaf and Blind which coordinates home-based parent education and infant stimulation.

Children over 3 years should be referred to their local school district to determine if the child would benefit from developmental preschool and special education. In addition to individualized educational programming, children may receive speech, occupational, physical, vision, and hearing services and adaptive equipment if relevant to educational goals.

Subspecialist Collaborations and Other Resources

Early developmental therapy is important for children with developmental delays and suspected or proven CP. Developmental therapies may be difficult to separate from disability related therapies - for instance a six month old with signs of lower extremity spasticity who is not yet turning side to side. For children with obvious signs of CP, the therapy received through early intervention may not be frequent enough and referrals to rehabilitation programs may be necessary. See the Resources section.

Spasticity and movement treatment: Includes both surgical and non-surgical interventions. If spasticity is severe, it may interfere with the child's functional abilities, make hygeine difficult, and cause discomfort. These may result from the spasticity itself or from secondary contractures and pressure sores. Spasticity may worsen when the patient is ill or upset. Oral medications, in combination with other modalities (e.g., physical therapy), may be very helpful for the child with spasticity. A team approach and realistic expectations are key to successful therapy. See [Delgado: 2010] for a practice parameter regarding the pharmacological management of spasticity in children with CP.

Non-surgical interventions may include:

• therapies - physical, occupational, and speech
• positioning aids (used to help the child sit, lie, or stand). - if the child isn't sitting by him/herself, a corner chair, tumble form or wheelchair is used to allow the child to be in a seated position for feeding and for optimal hand use during play and activities of daily living.
• braces and splints - used to prevent deformity and to provide support or protection. May be used during the day or night to provide stretch and optimal positioning across joints.
• standers/walkers - additional equipment to allow standing (weight bearing may help prevent osteoporosis, allow full lung expansion, stretches hamstrings, and allow children to be on-level with peers) and supported walking (for children requiring help with balance and support for walking)
• medications:
  • oral: although oral antispasmodic agents may cause excessive sleepiness, they are often tried because they are non-invasive. Examples are diazepam (Valium), baclofen (Lioresal), and clonazepam (Klonopin). Valium given before sleep is helpful in some patients and may not cause daytime drowsiness. [Mathew: 2005] There is not as much experience in pediatrics with modafinil (Provigil) [Murphy: 2008] and tizanidine (Zanaflex) but these medications may improve function of children with spasticity. Doses should be titrated to avoid weakness and extensive hypotonia. See [Delgado: 2010]
  • injections: botulinum toxin A (Botox) and B (Myobloc) and phenol injections are used to treat and prevent contractures that lead to tight ankles (difficulty walking) and hygiene problems (hip adduction contractures). These injections are usually combined with physical therapy, splinting, or casting to optimize impact. [Desloovere: 2007] See [Fehlings: 2010] and [Love: 2010] for Internation Consensus articles regarding the use of botulinum injections in upper and lower extremities, respectively. Despite the frequent use of botulinum toxin in children with CP, more studies are called for by some experts to prove efficacy in walking function. [Ryll: 2011]
    
    

Surgical interventions may be used to manage the complications of spasticity or to decrease spasticity and/or dystonia:

• orthopedic surgery to manage scoliosis, hip dislocations, muscle contractures, and ankle, foot and hand deformities. See [Imrie: 2010] and [Loeters: 2010] for discussions regarding the management of scoliosis in CP.
• spasticity management:
  • baclofen pump - in some patients with severe spasticity, a small programmable pump is placed in the abdomen with a catheter going to the intrathecal space to deliver baclofen. Complications include infection, catheter breakage, and a possible increase in scoliosis. Many patients and families have been very happy with this therapy. Pumps may be implanted in children as young as three years of age. The role of a baclofen pump in treating dystonia is less well understood but may be of benefit. In the individual patient, a trial is performed by intrathecal injection of baclofen. The individual child's response is then assessed over the subsequent 8 hour period. See baclofen pump information for more information.
  • dorsal rhizotomy - selective dorsal rhizotomy is a neurosurgical procedure performed to treat diplegia and quadriplegic cerebral palsy in selected patients. Its popularity has waxed and waned over the years. It can be very helpful in selected patients when combined with post operative rehabilitation. If the child/family and Medical Home are interested in dorsal rhizotomy, referral to a rehabilitation specialist and neurosurgeon is recommended to allow evaluation, discussion regarding possible risks and benefits, and consideration of alternate therapies.

Subspecialist Collaborations and Other Resources

Children who have obvious CP will benefit from a combination of services. The Medical Home provider should coordinate referrals based on the degree of mobility problems exhibited by the child. If the primary care provider doesn't feel comfortable with assessments of spasticity and the need for specific referrals, an evaluation with a pediatric physiatrist should be arranged for coordination of various modalities of care.

40-60% of children with CP will experience malnutrition. Careful monitoring of growth and weight gain in children with CP is critical, especially in those with feeding dysfunction, even mild feeding dysfunction. [Fung: 2002] Even in children with normal weight, micronutrient status may be inadequate. [Schoendorfer: 2010] Interventions may include optimizing oral feeding, addition of oral caloric supplements, a period of NG/NJ feeding, and placement of a permanent feeding tube. The Medical Home should ensure that treatment of dysphagia, gastroesophageal reflux disease (GERD), delayed gastric emptying, and constipation is optimized. Assessment of nutritional status in children with CP is complex and best done by someone familiar with the nutritional issues in this population. Intervention should be tailored to the child's needs and family-centered. See Nutrition and growth in children with CP. Also see Power Packing (general) for information on increasing calories in the child's diet. In a small percentage of patients, excessive weight gain can make mobility difficult and make it difficult for caregivers to lift the child.

Decreased linear growth and failure for females to experience menarche is also a concern for this population. See the treatment section on maturation for more information.

Dietary calcium and vitamin D metabolism insufficiency, particularly in children on medications for seizures, with resulting osteoporosis and pathologic fractures is of great concern in non-mobile children. See [Presedo: 2007] and Osteopenia/Pathologic Fractures (general) for more information. Also see Calcium and vitamin D (general).

Subspecialist Collaborations and Other Resources

Children with CP should be monitored carefully for low weight or decreasing weight gain and referred preventively to nutrition.

Gastroesophageal reflux is very common in this population, although it might present as arching, irritability, or food refusal rather than vomiting. Treatment can be started empirically (see Gastroesophageal reflux (general) for details of evaluation and treatment) with evaluation and/or a referral to gastroenterology if symptoms continue. Treatment is generally initiated with lansoprazole, a proton pump inhibitor. Treatment of reflux can be augmented by the use of a motility agent (metoclopromide or low dose erythromycin) or H2 blocker but the clinician must monitor closely for side effects (particularly irritability or dystonia with metoclopromide). If medical therapy is not successful or, despite optimal treatment of reflux, the child remains underweight, surgical procedures may be necessary. When medical therapy is not successful, Nissen or other type of fundoplication may be recommended and may be performed laparoscopically, shortening hospital and overall recovery time. For children who do not feed orally or who are poor surgical candidates, another option is moving the distal end of the feeding tube to the small intestine (ie, GJ tube or J tube).

Constipation is a problem in many, if not most, children with CP due to diet, lack of mobility, and spasticity. Constipation is easier to treat if caught early, and bowel history should be part of every Medical Home visit. Dietary management might be all that is necessary, with additions of juices and fiber, but many children will need daily treatment with laxatives (PEG 3350, Mirolax and Glycolax). Also see Constipation treatment (general), Fiber calculations ( 33 KB) , Bowel management parent information, and You can poop too program.

Tools that might be helpful include:

Subspecialist Collaborations and Other Resources

Many factors should be considered when deciding on Nissen fundoplication and/or gastrostomy tube placement. Gastrostomy tubes may be indicated for: poor oral intake of calories and/or fluids, swallowing difficulties, and severe reflux. If reflux is severe and aspiration is likely, many providers would recommend Nissen fundoplication with the gastrostomy placement. Treat for other GI issues, such as constipation, before making these decisions.

Swallowing dysfunction Up to 90% of children with CP have clinically significant swallowing dysfunction, with severe impairments noted in one third. Swallowing dysfunction may result in: drooling, salivary pooling (with resultant malodorous breath and increased risk of dental caries), malnutrition, and/or pulmonary aspiration. A speech therapist (or in some locations an occupational therapist) can evaluate swallowing function and safety, determine if interventions (e.g., speech therapy, special feeding techniques, improved feeding position) might lead to improvements in function, and determine the safest and most efficient textures for eating. In some cases, the therapist may suggest a fluoroscopic video swallow study (also called a modified barium or cookie swallow). If dysphagia is determined to be a problem, diets using pureed foods and thickened liquids or alternative feeding methods may be necessary to prevent aspiration. See Power Packing (general) and Thickening Liquids and Pureeing Foods (general).

Children with significant swallowing problems may need gastrostomy tube placement to allow efficient and safe liquid and/or food delivery. A gastrostomy tube may also be necessary in those children with CP with severe failure to thrive, even if aspiration is not an obvious problem. In some children, placement of a feeding tube might be thought of as a temporary intervention so that the family may focus on the child and the quality of his/her eating without worrying constantly about the number of calories the child has received. In the child with GERD and limited capacity to protect his/her airway, treatment with a Nissen fundoplication may be important. Also see Aspiration/Chronic Lung Disease (general) for more information.

Drooling Many parents will choose not to treat drooling due to concerns about the side effects of medication and surgery, but drooling in the socially aware older child with CP can be very embarrassing to the child and create a social barrier. See Drooling (general) and [Potulska: 2005] for resources and information about specific treatments. Also see [Love: 2010] for internation consensus recommendations regarding the use of botulinum toxin for drooling.

Subspecialist Collaborations and Other Resources

Seizures:Children with CP may have many types of seizures including generalized tonic-clonic, partial complex, and atypical absence. Most seizures in children with CP will be symptomatic. Seizure treatment will depend on seizure type and side effects of medications. Twenty to forty percent of children with CP have a seizure disorder. Sixty six% of children with hemiplegic CP have seizures, 43% of children with quadriplegia , and 16% of children with diplegia. Epilepsy is often severe and difficult to control particularly in children with associated mental retardation [Singhi: 2003]. See the Seizure module for information regarding treatment. In children with CP on seizure medications, consider a DEXA scan to monitor for osteopenia. See Osteopenia/Pathologic Fractures (general) and Osteoporosis and antiepileptic medications (general).

Hydrocephalus: If the head circumference is crossing percentile lines or there is a history of hydrocephalus and/or VP shunts, referral to neurosurgery should be considered. The primary care provider should help the family understand when the child with a shunt should be seen emergently, such as with new headaches and vomiting in the absence of a febrile illness. See Hydrocephalus and VP shunts (general).

Subspecialist Collaborations and Other Resources

Many children with CP have difficulty sleeping and this issue can impact the entire family. The reasons for sleep problems are diverse and include obstructive sleep apnea, pain and discomfort, seizures, separation anxiety, learned behaviors and restless leg syndrome. Behavioral management may be all that is necessary. Medications that might be helpful include diphenhydramine, chloral hydrate (successful only for short periods), melatonin, low dose trazadone, clonidine and valium. For details of behavioral management, see Sleep Problems (general). In complicated scenarios, referral to a sleep center and possibly an overnight sleep study should be considered. Also see Medications for sleep (general).

Subspecialist Collaborations and Other Resources

Failure to achieve linear growth and delayed pubertal development with increased risk for osteoporosis is common in children with CP. See the nutrition system above for more information.

Menses can be difficult to manage in some adolescent girls with CP. Difficulties may arise in managing hygiene by the adolescent or family. Dysphoria/irritability/cramping or heavy periods may occur, as in any adolescent population, and some girls experience exacerbation of their seizure disorder with the menstrual cycle. Traditionally, Depo-provera is often used to suppress menstruation, but may be associated with decreased bone mineralization in adolescents. ([Walsh: 2008], but see [Tolaymat: 2007] and [Kaunitz: 2008]). Oral contraceptive preparations may also be used (skipping placebos) successfully in many adolescents, although spotting often occurs over the initial 6 month period. Intrauterine devices that release small amounts of progesterone locally may also be an option. For a full discussion see Sexuality and People with Disabilities ( 257 KB) and Gynecological Providers for CSHCN ( 114 KB) .

Sexuality needs to be discussed with adolescents with disabilities and their parents to overcome barriers that are often present. Such barriers may include: the assumption that teens with disabilities do not need this information, the lack of sex education specific to people with disabilities, motor impairments that may make sexual function difficult, e.g., condom use, the presence of intellectual impairment that might complicate the imparting and understanding of sex education material, concerns about sexual exploitation in this population, and body image concerns on the part of the adolescents. See Sexuality and People with Disabilities ( 257 KB)

Disability and chronic health conditions may result in primary and secondary sexual dysfunction. When surveyed, more than 90% of young adults with CP indicated a desire for more information about sexual function. SexualHealth.com is a web site created to provide information regarding sexual dysfunction for individuals with disability or chronic health conditions. (Editors Note: A good information resource but not a web site for children.)

Subspecialist Collaborations and Other Resources

Approximately one quarter of children with CP will have primary urinary incontinence [Odding: 2006], and in some this will be due to a spastic bladder. Still, studies have shown that toilet training can be very successful in children with CP, including those with cognitive impairment. For more information, see Toilet Training (general).

Subspecialist Collaborations and Other Resources

As discussed in the assessment section, children with CP have frequent visual problems and if present should be followed by a pediatric ophthalmologist. See also Visual Impairment. Children with visual problems should be referred for vision services; these will differ for children under 3 and school-aged children. Children with both vision and hearing impairments may be eligible for programs for children with dual sensory impairments. For information, see Vision and hearing impairment information.

Subspecialist Collaborations and Other Resources

Even if the newborn hearing screen is passed, children with CP may have later onset hearing loss (e.g., cytomegalovirus), and should be evaluated if there is clinical suspicion of hearing loss. Children with auditory problems should be referred to hearing impaired specific early childhood programs if they are under three years of age, or served through their school district if they are school aged. Children with both vision and hearing impairments may be eligible for programs for children with dual sensory impairments. See Vision and hearing impairment information.

Subspecialist Collaborations and Other Resources

Children with CP usually have an individualized education plan (IEP) and a school health plan. The latter should be reviewed for accuracy. The Medical Home may need to oversee school services for children with CP, as services vary greatly between and within states. Although physical and occupational therapy may be provided through the school, in some areas this will be on a limited basis only (as needed for functioning in school, not as prescribed medically), whereas in other locations these therapies may be more available. Access to communication devices if necessary occurs in the school setting. Each district has a team, the Augmentative Team, that can assess the child's communication abilities and provide means of augmentative communication ranging from simple switches to sophisticated communication devices. An evaluation by the Augmentative Team should be requested from the child's speech therapist at school, or as part of an initial evaluation and repeated when indicated. See Augmentative Communication (general). Also see Inclusion Models (general).

Many children with disabilities want to participate in leisure and sports activities. The need for adapted Physical Education and/or supports or social structuring on the playground should be included in the child's IEP. A Physical Therapy consultation can be helpful either in the school situation or for home adaptations (e.g., the child who wants a bike for a present but the parents don't know what to purchase, or the child is interested in obtaining a sporting wheelchair.) Also see Adapted Toys.

Adapted Athletic Programs: Community-based athletic programs are an option for many children if the family, child, and program are given adequate support. Not only can athletic activities enhance psychological health, but, as the child grows, they can help counter a drop off in gross motor function in part due to de-conditioning. Success depends upon the appropriate choice of activities, adapted equipment, adapted rules for the special needs child when appropriate, and support from peers, other parents, and coaches.

Also see Recreational Activities for CSHCN 2008 ( 115 KB) and Resources (below).

Funding, see Prescription Assistance Programs (general), Formula Funding (general), Services for the uninsured or under-insured (general), Supplemental Security Income (SSI) (general), Over-the-Counter Drug list, Medicaid, Utah, 2006 ( 41 KB) , Appealing Funding Denials (general), and Resources (below).

Respite care, see Resources.

Support Groups: See Online parent discussion group, Utah children with special health care needs and Resources.

Transition and life planning: Although those children with CP in special education will be served by the school system until they turn age 22, planning for life after school should be started in early adolescence, including consideration of vocational training and where the child will live (by themselves, in a group home, etc). If necessary, guardianship needs to be applied for. This can be a lengthy process including pyschological and medical evaluations of the child and the involvement of a lawyer with expertise in this area. Guardianship should be applied for before the child reaches 18 years of age. In some states, children become eligible for Medicaid based on their own financial resources and ability to work at age 18 and may qualify for resources with the Division of Services for People with Disabilities (DSPD) they might have been ineligible for (based on family income) before their 18th birthday. See Guardianship (general), and Life Planning (general).

Transitions refers to the process of moving from the pediatric health care and educational environment to the adult health care system and occupational environment. Successful transition should be fostered for children of all abilities from the very beginning through activities which give the message of expectation, responsibility, and value. Age specific activities to support transition to adulthood ( 27 KB) (This site also has a helpful checklist for the front of the chart to remind clinicians/nursing to encourage and model transition supporting activities.) See also Transitions fact sheet (National Alliance to Advance Adolescent Health) and [American: 2000].

Many therapies are available that have had limited evaluation. Particularly popular (and sometimes expensive) therapies have included hyperbaric oxygen, patterning, cranial sacral therapy, stem cell administration, and nutritional supplements. It is impossible to provide up to date information on each therapy. Most importantly, is that a family have a frame work to use when considering each therapy (including traditional therapies) and collaborate with the child's Medical Home and or specialists to incorporate choice therapies into the child's overall treatment plan. See Alternative/Complementary Therapies (general info).

For Professionals

Information on spasticity, choreoathetosis, more (WE MOVE)
The Worldwide Education and Awareness for Movement Disorders.

CP information - NIH
Information about cerebral palsy from the National Institutes of Health.

Developmental Behavioral Pediatric update course (dbpeds.org)
Slides from lectures given at the DBPeds Prep Course, 2008, with various links, including genetic cases, learning disabilities, sleep disorders, and others.

For Parents and Patients

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Child Development Clinic, more info...
44 N Mario Capecchi Drive
Salt Lake City, UT 84114
Phone: 801-584-8510
Toll Free Phone: 800-829-8200
Fax: 801-584-8579
http://health.utah.gov/cshcn/cdc/

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