A diagnosis of Cerebral Palsy can be life-altering for a child and his or her parents. For parents, concern that the child is not meeting established developmental milestones is confirmed with an official diagnosis, which, in turn, leads to many questions:
- What is Cerebral Palsy?
- How did my child acquire it?
- What does the future hold?
- What can I do to help my child grow, development and mature with this impairment?
Parents are likely comforted to learn that while their child has a physical impairment, it can be managed – in most cases by the multi-disciplinary, medical team of individuals who specialize in areas of treatment the child will require.
Many government agencies, community support groups, funding services, and professional services are available to help. Even the public education system is mandated to assist during school-aged years and with transitioning into adulthood.
The process will require information, coordination, planning, cooperation, and implementation. Abilities will be assessed, capabilities will be analyzed, goals will be formed, and a plan will be implemented, monitored and re-assessed throughout the child’s life.
Cerebral Palsy treatment requires a multi-disciplinary medical team and a coordinated, comprehensive treatment plan
Steps to a coordinated, comprehensive medical care plan. The Six-Step Treatment Plan include:
- Obtain diagnosis and acquire medical records
- Assemble a care team
- Assess abilities
- Determine goals
- Create, implement and monitor a coordinated, comprehensive care plan
- Maintain records
These steps are detailed below:
Step 1: Obtain diagnosis and acquire medical records
Once a diagnosis of Cerebral Palsy is made, parents are provided with an explanation of the brain injury and its cause; the extent, location and severity of the child’s Cerebral Palsy and a list of other associated conditions and co-mitigating factors. MyChild™ has created two documents to assist parents in documenting exposure to risk factors and diagnosis specifics, they are:
- The Cerebral Palsy Risk Factor Checklist
- The Cerebral Palsy Diagnosis Checklist
The parent should also request a copy of medical records and test results to place in the child’s home medical records file to reference throughout the years. It may be more efficient for the parent to ask the medical practitioners for these results at the time they are revealed, than to formally request medical records at a later time. For more information on obtaining medical records:
- The Record Keeping
Step 2: Assemble a care team
The primary care physician (usually a pediatrician, pediatric neurologist, or developmental pediatrician), in partnership with the child’s parents, will begin the process of evaluating the child’s ability level compared to developmental standards. Since research has proven a child with Cerebral Palsy may also be at risk for secondary conditions, associated conditions, and co-mitigating factors, the primary care physician will likely refer the child to one or more specialists, who will each help assess the scope of medical concerns to be included in the care plan.
Research has shown a correlation between Cerebral Palsy and intellectual, vision, hearing, and communication impairment, along with a higher propensity to experience seizures. A medical care plan is required to address all medical conditions simultaneously. It is recommended that the child’s primary care physician oversee all treatment to ensure one treatment does not hinder another, or interact in a manner that could be harmful to the child.
The medical care team may include one or more of the following specialists:
- Behavioral therapist/psychotherapy
- Counselors and social workers
- Dentists or orthodontists
- Developmental pediatrician
- ENT or otorhinolangologist
- Obstetrics gynecologists
- Occupational therapist
- Orthopedist or orthopedic surgeons
- Physical therapists
- Rehabilitation medicine specialist
- Speech and language pathologists
Members of the care team may come and go throughout an individual’s life, dependent on the child’s condition, progress, insurance and family preference. A group of doctors might come to mind for someone envisioning the way a medical care team will look, but the nature of Cerebral Palsy calls for a wider scope of assistance; some will help at the doctor’s practice, while others may provide services in private offices, or at home. These services are coordinated through the public education system, various government agencies, and community organizations.
Product and service providers may be consulted when the need for adaptive equipment, assistive technologies, communication devices, or home or automobile modifications arise.
Step 3: Assess abilities
Mobility and motor impairment assessments will establish severity, extent, and location of impairment. However, a number of other assessments – intellectual skills, behavior, emotional, and attention, for example – may be required, as well.
A child’s diet, eating habits and ability to properly process food will be analyzed. Respiratory conditions, sensory abilities, balance, posture, skin and oral health will also be evaluated. Assessments may be required in the following areas:
Mobility and motor impairment evaluation:
- Muscle tone
- Movement coordination and control
- Gross motor function
- Fine motor function
- Oral motor function (feeding, swallowing, respiratory, speech, vocal)
Associative conditions and co-mitigating factor assessment:
- Cognitive, psychological and behavioral
- Gastrointestinal, nutritional and dietary
- Oral health
- Skin health
For more information, Associative Conditions and Co-Mitigating Factors
Step 4: Determine goals
Cerebral Palsy is a chronic condition, meaning it will not go away. Since Cerebral Palsy is a one-time only brain injury, it will not progress. Every child’s condition is unique, and every child may require a customized care plan. The main long-term goal in treating Cerebral Palsy is to provide an individual with the highest degree of independence along with optimal quality of life. The care plan will likely include the following ten goals, as well as a few goals customized specifically to address the child’s unique circumstances.
Care plan goals for Cerebral Palsy include:
- Optimize mobility
- Manage primary conditions
- Control pain
- Prevent and manage complications, associative conditions and co-mitigating factors
- Maximize independence
- Enhance social and peer interactions
- Foster self-care
- Maximize ability to communicate
- Maximize learning potential
- Enhance quality of life
Research has proven the life expectancy of a child with Cerebral Palsy can be optimized when his or her conditions are properly managed. With the exception of some severe cases, most individuals diagnosed with Cerebral Palsy are expected to live the span of a normal life. Research also indicates the life expectancy of a child with Cerebral Palsy is affected by his or her level of mobility, as well as the ability to communicate, socialize, feed, clothe and bathe his or her self and control pain. Other important factors include seizure control, prevention of respiratory disease and optimization of cognitive functioning, learning opportunities and the ability to see.
For more information, Life Expectancy of Cerebral Palsy
In order to maximize the child’s future potential and impact his or her quality of life, parents are encouraged to embrace a treatment plan that incorporates these goals to the fullest ability of the child.
Step 5: Create, implement and monitor a coordinated comprehensive medical care plan
Unfortunately, no standard treatment protocol exists for a child with Cerebral Palsy; since every child’s condition is unique, every child will require a customized approach to treatment. Parents work closely with the child’s primary care physician to implement a coordinated and comprehensive medical care plan that may contain:
- Conventional medical treatment
- Complementary medical treatment
- Alternative interventions
All treatment should be coordinated with the primary care physician so one procedure does not adversely affect another or place the child’s health or safety in jeopardy. Treatment and therapy programs will likely involve one or more, of the following:
- Medications and Drug Therapy
- Assistive Technology – Global Perspective
- Assistive Technology – National Perspective
- Complementary and Alternative Medicine
Medical treatment for Cerebral Palsy is not a one-time treatment cure. Medical needs for those with Cerebral Palsy are dependent upon severity, extent, level, location and co-mitigating factors and may vary as the child develops and grows into adulthood.
Treatment coincides with the child’s development needs. For example, early intervention usually consists of early diagnosis and information passed from doctor to parent in an effort to encourage the whole family to embrace the child’s health condition. With this information, parents will prepare to cope – for the child’s welfare – with new demands placed on the family.
Between the age of two and five, concentration may be placed on optimizing opportunities for mobility. From age five-10 the child will be enrolled in school and under the guidance of the Individualized Education Plan provided by the school system. From the age of 11-15, emphasis is placed on opportunities to enhance the child’s socialization and optimize his or her ability to function independently. At age 15, focus is placed on transitioning the child into adulthood with independent living, college or trade school opportunities, and workforce development.
Even after the child becomes an adult, circumstances such as the natural aging process, the onset of other health conditions and the demands of daily living may lead to revised care goals. As the individual ages, decisions need to be made as to who will provide his or her care and how that care will be subsidized.
Still, medical care is only one component of the child’s total life care plan.
For more information, Treatment of Cerebral Palsy
Step 6: Maintain Records
Most states mandate that medical professionals who originally order or prescribe treatment maintain medical records only a certain number of years. Not all medical professionals or medical facilities provide patients with the option of obtaining records before they can be legally destroyed. Maintaining medical records for a child diagnosed with Cerebral Palsy has many advantages:
- Evaluate progress
- Update treatment goals and plans
- Share with new care team members
- Reference when caring for the child
- Reduce duplication costs when medical records are requested for insurance, treatment or benefit consideration
- Document diagnosis
- Record exam and assessment results
- Provide a history of care
- Avoid the need to mentally catalog years of cumbersome medical information
For best results, parents should ask for a copy of the child’s medical records at the time a physician is explaining test results or prescribing treatment. At this time, it is generally assumed that you and your insurance carriers are already paying for the test and the interpretation of the test results, and are therefore entitled to the corresponding medical records.
A medical professional will usually provide the documents upon request at the time of check-out. If medical records are requested after considerable time has passed, parents may be asked to pay an administrative fee and wait, usually one to four weeks, for fulfillment of the request.
States have set guidelines related to the number of years a medical professional is required to keep medical records, usually seven years after the last visit. They are not obligated to inform patients when disposing of records. Medical records of a child with Cerebral Palsy can be useful at many points in the child’s development and treatment.