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Cerebral Palsy - Treatment & Management

Overview

The management of CP focuses on maximizing the child's capabilities at home and in the community, treating associated medical conditions, and preventing/treating orthopedic complications. Treatment should be interdisciplinary and start as early as possible. Specific interventions are based on:
  • the child's age
  • overall health
  • medical history
  • the extent and severity of the disease
  • the type of CP
  • the child's tolerance for specific medications, procedures, or therapies
  • expectations for the course of the disease
  • the opinion or preference of the child and the parents
  • funding considerations

Primary Care Roles

In addition to a place where a child with CP can go with an acute illness, a child with CP needs a Medical Home for well-child and chronic care visits, where progress and problems can be reviewed and acted upon in a proactive manner. In addition, a child with CP often needs access to a large number of subspecialists and the Medical Home should be the initiator and coordinator of these visits with input from the family, who will sometimes be more familiar with treatment and therapy options than the Medical Home provider. The goal is to have the child see the subspecialists needed but to avoid duplication of services or unnecessary appointments.

Pearls And Alerts

There are significant ethnic and racial disparities in the treatment of children with CP. [Berry: 2010]

Complimentary alernative medicine (CAM) is used by many families. Ask families about herbal treatments, relaxation techniques, or other therapies. See [Samdup: 2006].

The educational system may provide physical and occupational therapy focused upon educational goals. Private therapy may be a necessary addition for some children to allow intensive focus on specific medical goals. The Medical Home should review therapies and frequency with every visit and advocate for families if more therapy would be helpful. See Children's Education Services, (801-662-4914) and/or LINCS, (801-281-4425); See also Services below.

Children with both visual and hearing impairment, including cortical blindness or visual impairment, may qualify for a deaf/blind program, which can usually be accessed through the local school for the deaf and blind. Children with dual sensory impairment have a disability that is different and more complicated than the sum of vision and hearing impairments and may qualify for special services. See Deaf/blind information; dual sensory impairment and Additional info and links - deafblindedness.

Practice Guidelines

There are no validated practice guidelines on the management of children with CP. See the Helpful Articles section for information regarding management and preventive treatment of children with CP.

Systems

Development (general)

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.

Early Intervention Programs (see Services below for relevant providers)

Early intervention programs are low cost (generally with a sliding fee based on family income) and involves therapists providing treatment in the home and/or child play-groups, depending on the child's needs.

Special Needs Schools, Other (see Services below for relevant providers)

School for the Deaf and Blind - PIP programs for children 0 to 3 with vision and/or hearing impairments (and/or both vision and hearing impairments).

Mobility/Function/ADLs/Adaptive

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.

Pediatric Physical Medicine & Rehab (see Services below for relevant providers)

To manage and treat spasticity, including oral medications, injections, and evaluation and referral for the baclofen pump. May also help with coordinating care, long-range planning, and referral management.

Pediatric Orthopedics (see Services below for relevant providers)

To evaluate and treat orthopedic complications of spasticity such as tight heel cords, dislocated hips, scoliosis. Generally children with CP should be referred at the time of diagnosis to an orthopedic surgeon familiar with this population and then be evaluated by them at regular intervals.

Pediatric Neurosurgery (see Services below for relevant providers)

For placement of baclofen pumps, although in some locations, referral will be via physical medicine and rehabilitation.

Nutrition/Growth/Bone

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.

Nutrition/Dietary (see Services below for relevant providers)

To evalute growth parameters and suggest dietary changes that might be helpful. To perform a diet history for calories and nutrients. To follow skin-fold measurements, which might be a better measure than weight for height in children with CP.

Pediatric Gastroenterology (see Services below for relevant providers)

To evaluate and manage nutrition issues, including treating associated GI conditions such as constipation and gastroesophageal reflux that might be adding to poor weight gain. For the evaluation and placement of gastrostomy tubes.

Bone Densitometry/DEXA (see Services below for relevant providers)

Dexascan: Children with CP who are non-mobile, particularly if they are on antiepileptic drugs, should get a baseline dexascan.

Pediatric Endocrinology (see Services below for relevant providers)

A child should be referred to endocrinology if poor growth raises concerns of hormonal problems and/or if bone density is low and treatment is being considered.

Gastro-Intestinal & Bowel Function

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(PDF Document 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.

Pediatric Gastroenterology (see Services below for relevant providers)

To evaluate and manage general issues such as constipation, reflux, gastrostomy tube placement, and referral for Nissen fundoplication and gastrostomy tube placement when necessary.

General Pediatric Surgery (see Services below for relevant providers)

For the placement of gastrostomy tubes and for Nissen fundoplications.

Nose/Throat/Mouth/Swallowing

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

Developmental Pediatrics (see Services below for relevant providers)

To coordinate evaluation and management of feeding concerns.

Pediatric Otolaryngology (see Services below for relevant providers)

To evaluate and treat problems with swallowing (submucosal cleft, etc.) and drooling.

Pediatric Gastroenterology (see Services below for relevant providers)

To evaluate nutrition and swallowing and placement of gastrostomy tubes.

General Pediatric Surgery (see Services below for relevant providers)

To perform gastrostomy (and other) tube placements as well as Nissen fundoplications when necessary.

Neurology

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.

Subspecialist Collaborations and Other Resources

Pediatric Neurology (see Services below for relevant providers)

To confirm the diagnosis of CP and to manage seizures, if present. Some children may benefit from comanagement with neurology and their Medical Home for seizures whereas other children may only require occasional consultation. This should be decided after the first referral to the neurologist and with family input.

Pediatric Neurosurgery (see Services below for relevant providers)

To evaluate and treat hydrocephalus; this usually requires concurrent management by a neurosurgeon and the Medical Home.

Sleep

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

Sleep Studies/Polysomnography (see Services below for relevant providers)

To evaluate and treat pediatric sleep disorders.

Pediatric Otolaryngology (see Services below for relevant providers)

For tonsillectomy and adenoidectomy if enlarged and the child with CP has obstructive sleep apnea.

Maturation/Sexual/Reproductive

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(PDF Document 257 KB) and Gynecological Providers for CSHCN(PDF Document 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(PDF Document 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

Gynecology (Ped/Adol, Special Needs) (see Services below for relevant providers)

Also see the link above for providers who have specifically endorsed care for girls with disabilties.

Genito-Urinary

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

Pediatric Urology (see Services below for relevant providers)

Children with CP may need referral to urology for diagnostic evaluation and treatment of incontinence.

Developmental Pediatrics (see Services below for relevant providers)

To design a toilet training program for children with CP and incontinence.

Eyes/Vision

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

Pediatric Ophthalmology (see Services below for relevant providers)

Most children with CP should have at least one visit with a pediatric ophthalmologist for an evaluation, even if no problems are reported by parents or observed in the Medical Home visit because visual problems in the first few years of life may lead to permanent, but avoidable, vision loss. At the first referral, followup should be specified by the consulting pediatric ophthalmologist.

Vision Services (see Services below for relevant providers)

Many states have Schools for the Blind where vision services for that state originate. Services for children under 3 are sometimes offered in home, and services for school-aged children are offered through the school districts.

Ears/Hearing

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

Pediatric Otolaryngology (see Services below for relevant providers)

Children with CP and hearing loss, especially if they have frequent ear infections, middle ear fluid, drooling and/or swallowing problems should be referred to otolaryngology.

Audiology (see Services below for relevant providers)

Hearing evaluations are sometimes available through the school district at no charge or through the state's Department of Health on a sliding fee basis. Private providers are also an option, although the audiologist should be familiar with issues seen in children with disabilities. Hearing aid prescriptions and referrals for cochlear implants if necessary will be made through audiology.

Learning/Education/Schools

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).

Recreation & Leisure

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(PDF Document 115 KB) and Resources (below).

Family

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 (Utah Medicaid)(PDF Document 41 KB), Appealing Funding Denials (general), and Resources (below).

Respite care, see Resources.

Support Groups: See 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

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(PDF Document 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].

Complementary & Alternative Medicine

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).

Resources

Information & Support

For Professionals

Information on spasticity, choreoathetosis, more
The International Parkinson and Movement Disorder Society, disorders including ataxia, bradykinesia, chorea and choreoathetosis, clonus, dystonia, myoclonus, restless legs syndrome, rigidity, spasticity, tics and tremor

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

Support

Cerebral palsy support groups (Children's Disability Information)
A list of support groups for different types of CP as well as other resources

United Cerebral Palsy
This national non-profit organization, provides information on a variety of topics including advocacy, conferences, insurance, sexuality, policy, and other items for the public and providers.

General

CP information (MedlinePlus)
from the National Library of Medicine; basic information and links to many additional sources of reliable information

NINDS Cerebral Palsy Information Page
A webpage of the National Institute of Neurological Disorders and Strokes (NINDS) providing a thorough overview of CP plus links to multiple organizations, publications, and education tools. For physicians as well as patients and families

Other resources on the United Cerebral Palsy website
Other resources are listed on the UCP - Utah website.

Resource list, Autism Council of Utah
A list of extensive local resources is available on this web site.

Practice Guidelines

Delgado MR, Hirtz D, Aisen M, Ashwal S, Fehlings DL, McLaughlin J, Morrison LA, Shrader MW, Tilton A, Vargus-Adams J.
Practice parameter: pharmacologic treatment of spasticity in children and adolescents with cerebral palsy (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society.
Neurology. 2010;74(4):336-43. PubMed abstract

Tools

Bowel Management (general)(PDF Document 74 KB)
General information on bowel function and management of constipation for families and providers.

Bowel Management Algorithm(PDF Document 47 KB)
Algorithm for management of chronic constipation developed in collaboration with pediatric gastroenterology.

Constipation Evaluation Tool(PDF Document 84 KB)
Provides a format for evaluation of chronic constipation in children.

Home Toileting Record(PDF Document 49 KB)
An easy-to-use form for keeping track of a child's toileting habits.

Services

Adaptive Recreation

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Audiology

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Bone Densitometry/DEXA

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Camps

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Developmental Pediatrics

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Early Intervention Programs

CSHCN 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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Educational Advocacy

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General Pediatric Surgery

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Gynecology (Ped/Adol, Special Needs)

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Nutrition/Dietary

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Pediatric Endocrinology

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Pediatric Gastroenterology

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Pediatric Neurology

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Pediatric Neurosurgery

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Pediatric Ophthalmology

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Pediatric Orthopedics

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Pediatric Otolaryngology

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Pediatric Physical Medicine & Rehab

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Pediatric Urology

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Recreation Programs/Activities

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Recreation Therapy

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Scholarships, Recreation

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School Districts

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Services for People with Disabilities

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Sleep Studies/Polysomnography

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Social & Recreational Opportunities

See all Social & Recreational Opportunities services providers (31) in our database.

Special Needs Schools, Other

See all Special Needs Schools, Other services providers (23) in our database.

State Financial Agencies

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Vision Services

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For other services related to this condition, browse our Services categories or search our database.

Helpful Articles

PubMed Search on cerebral palsy: review articles for the last 2 years

Allen, PJ and Vessey, JA ed.
Primary Care of the Child with a Chronic Condition.
Fourth Edition ed. St. Louis, Missouri: Mosby; 2004. -13 978-0-323-02364-1

Wilson, GN and Cooley, WC.
Preventive Management of Children with Congenital Anomalies and Syndromes.
Cambridge, United Kingdom: Cambridge University Press; 2000. 0 521 77673 2

Medline Plus.
Cerebral Palsy.
National Institutes of Health; (2008) http://medlineplus.nlm.nih.gov/medlineplus/cerebralpalsy.html.
Information regarding the care of a child with CP, including links to many other sources of information.

Authors

Authors: Lisa Samson-Fang, MD - 3/2008
Lynne M Kerr, MD, PhD - 3/2007
Content Last Updated: 3/2008

Page Bibliography

American Academy of Pediatrics Committee on Children With Disabilities.
The role of the pediatrician in transitioning children and adolescents with developmental disabilities and chronic illnesses from school to work or college. American Academy of Pediatrics. Committee on Children With Disabilities.
Pediatrics. 2000;106(4):854-6. PubMed abstract
A good overview of the process, the players and the physician's role.

Berry JG, Bloom S, Foley S, Palfrey JS.
Health inequity in children and youth with chronic health conditions.
Pediatrics. 2010;126 Suppl 3:S111-9. PubMed abstract

Delgado MR, Hirtz D, Aisen M, Ashwal S, Fehlings DL, McLaughlin J, Morrison LA, Shrader MW, Tilton A, Vargus-Adams J.
Practice parameter: pharmacologic treatment of spasticity in children and adolescents with cerebral palsy (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society.
Neurology. 2010;74(4):336-43. PubMed abstract

Desloovere K, Molenaers G, De Cat J, Pauwels P, Van Campenhout A, Ortibus E, Fabry G, De Cock P.
Motor function following multilevel botulinum toxin type A treatment in children with cerebral palsy.
Dev Med Child Neurol. 2007;49(1):56-61. PubMed abstract

Fehlings D, Novak I, Berweck S, Hoare B, Stott NS, Russo RN.
Botulinum toxin assessment, intervention and follow-up for paediatric upper limb hypertonicity: international consensus statement.
Eur J Neurol. 2010;17 Suppl 2:38-56. PubMed abstract

Fung EB, Samson-Fang L, Stallings VA, Conaway M, Liptak G, Henderson RC, Worley G, O'Donnell M, Calvert R, Rosenbaum P, Chumlea W, Stevenson RD.
Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy.
J Am Diet Assoc. 2002;102(3):361-73. PubMed abstract

Imrie MN, Yaszay B.
Management of spinal deformity in cerebral palsy.
Orthop Clin North Am. 2010;41(4):531-47. PubMed abstract

Kaunitz AM, Arias R, McClung M.
Bone density recovery after depot medroxyprogesterone acetate injectable contraception use.
Contraception. 2008;77(2):67-76. PubMed abstract

Loeters MJ, Maathuis CG, Hadders-Algra M.
Risk factors for emergence and progression of scoliosis in children with severe cerebral palsy: a systematic review.
Dev Med Child Neurol. 2010;52(7):605-11. PubMed abstract

Love SC, Novak I, Kentish M, Desloovere K, Heinen F, Molenaers G, O'Flaherty S, Graham HK.
Botulinum toxin assessment, intervention and after-care for lower limb spasticity in children with cerebral palsy: international consensus statement.
Eur J Neurol. 2010;17 Suppl 2:9-37. PubMed abstract

Mathew A, Mathew MC.
Bedtime diazepam enhances well-being in children with spastic cerebral palsy.
Pediatr Rehabil. 2005;8(1):63-6. PubMed abstract

Murphy AM, Milo-Manson G, Best A, Campbell KA, Fehlings D.
Impact of modafinil on spasticity reduction and quality of life in children with CP.
Dev Med Child Neurol. 2008;50(7):510-4. PubMed abstract

Odding, E, Roebroeck, ME, and Stam, HJ.
The Epidemiology of cerebral palsy: incidence, impairments, and risk factors.
UCP Research and Education Foundation Fact Sheet; (2006) http://www.ucpresearch.org/fact-sheets/epidemiology-cerebral-palsy.php. Accessed on August 2008.

Potulska A, Friedman A.
Controlling sialorrhoea: a review of available treatment options.
Expert Opin Pharmacother. 2005;6(9):1551-4. PubMed abstract

Ryll U, Bastiaenen C, De Bie R, Staal B.
Effects of leg muscle botulinum toxin A injections on walking in children with spasticity-related cerebral palsy: a systematic review.
Dev Med Child Neurol. 2011;53(3):210-6. PubMed abstract

Samdup DZ, Smith RG, Il Song S.
The use of complementary and alternative medicine in children with chronic medical conditions.
Am J Phys Med Rehabil. 2006;85(10):842-6. PubMed abstract

Schoendorfer N, Boyd R, Davies PS.
Micronutrient adequacy and morbidity: paucity of information in children with cerebral palsy.
Nutr Rev. 2010;68(12):739-48. PubMed abstract

Singhi P, Jagirdar S, Khandelwal N, Malhi P.
Epilepsy in children with cerebral palsy.
J Child Neurol. 2003;18(3):174-9. PubMed abstract

Tolaymat LL, Kaunitz AM.
Long-acting contraceptives in adolescents.
Curr Opin Obstet Gynecol. 2007;19(5):453-60. PubMed abstract

Walsh JS, Eastell R, Peel NF.
Effects of Depot medroxyprogesterone acetate on bone density and bone metabolism before and after peak bone mass: a case-control study.
J Clin Endocrinol Metab. 2008;93(4):1317-23. PubMed abstract