Living with Cerebral Palsy (CP)
What is Cerebral Palsy?
Cerebral palsy is a muscle control disorder caused by damage to the developing brain, including parts of the brain that control motor function, coordination, and balance. This damage can occur before, during or after birth. Many cases of cerebral palsy are caused by prenatal injuries, but around 20 percent are caused by injuries during birth, and about 10 percent are caused by injuries after birth. Common medical mistakes causing cerebral palsy include:
- Failure to properly monitor and asses the fetal heartbeat during labor and delivery.
- Failure to schedule and provide a timely C-section.
- Failure to detect and treat maternal infections.
- Failure to use birth-assisting tools correctly, such as forceps or a vacuum extraction tool.
- Failure to correct umbilical cord problems, such as a prolapsed cord.
- Failure to supply oxygen or medications in a timely manner to an asphyxiated infant.
- Failure to monitor respiratory and oxygen treatments after birth.
Before we delve into the issues of living with cerebral palsy, let’s review some of the more technical/medical issues as they impact the daily life of a child with cerebral palsy.
Prognosis for Infant/Children with Cerebral Palsy
The prognosis is different for each individual with CP, depending on the severity of the disorder. Those with more severe disabilities may need lifelong care. There are many factors which will affect the prognosis of an infant/child with CP. The more impairments and disabilities a child with CP suffers from, the more likely the prognosis will be negatively affected. The severity of each impairment also plays a significant role in CP prognosis. Some of these children may need special education accommodations for assistance with communication, hearing, vision, and speech or language therapy. Mobility issues will also affect the prognosis. Some infants will have severe mobility issues, such as quadriplegia, while others may be able to walk without assistance. The prognosis for each child with CP is individualized but early diagnosis and institution of appropriate treatment options are important for the child to live the best quality of life possible.
Treatments for Cerebral Palsy
There is no cure for cerebral palsy, but various treatment options can improve symptoms and the infant/child’s quality of life. The purpose of treatment for cerebral palsy is to promote the most normal, manageable and healthy life possible and to maximize independence. Treatment options include: (1) medications to help control spastic movements and seizures, and to control pain; (2) surgical procedures to improve mobility or manage pain; and (3) different types of therapies to improve physical, mental, social and learning deficits. It is imperative to start therapies early, as this can help reduce impairments in the infant/child with cerebral palsy and lessen the risk of developing other associated conditions.
Potential Issues Faced by a Child with Cerebral Palsy
- Movement and walking disabilities
- Speech difficulties
- Learning disabilities
- Cognitive impairments
- Hearing or vision loss
- Emotional and behavioral challenges
- Spinal deformities
- Joint problems
Considerations Before Starting Cerebral Palsy Treatment
The needs of a child with cerebral palsy include addressing social and emotional aspects of the condition, not just dealing with correcting their physical disabilities. A well-rounded approach to managing a child’s needs with cerebral palsy requires a team of multidisciplinary specialists. These specialists, as a team, ensure all areas of the child’s development are proceeding as normally as possible. Types of specialists a child with cerebral palsy may require include:
- Developmental pediatrician
- Physical therapist
- Occupational therapist
- Behavioral therapist
- Speech and language therapist
- Ophthalmologist (eye specialist)
- Otolaryngologist (ear, nose and throat specialist)
Medication use in the Child with Cerebral Palsy
The goal of medications is to reduce symptoms and prevent complications. Most of the medications used for this disorder in children are off label for age and indication and should be prescribed only by physicians experienced in their use and familiar with their adverse effects. Medications are used to reduce/control the following symptoms:
- Muscle spasms
Surgery in the Child with Cerebral Palsy
Surgery can correct or improve movement and alignment in all extremities and can include procedures on muscles, tendons, bones or nerves. The goal of surgery is to give the child the greatest chance of living as independently as possible; to make their condition more manageable; and to prevent future complications. Surgery can be used in the following settings:
- Relieve stiff muscles
- Correct spinal curvatures (scoliosis)
- Reduce tremors
- Correct foot deformities
- Improve posture
- Improve balance and coordination
- Relieve pain
- Correct fixed joints and tendons
- Prevent spinal deformities
- Free tightened muscles (contractures)
- Prevent hip dislocation
Living with Cerebral Palsy
Assistive Devices for Children with Cerebral Palsy
Specialized technology devices provide individuals with cerebral palsy the opportunity to enjoy life independently.
Mobility Aids for Individuals with Cerebral Palsy
Most children with cerebral palsy face mobility limitations. The use of assistive technologies can help to manage or improve these mobility problems. Examples of such devices include:
- Orthotic Devices: Braces worn externally to improve and strengthen mobility.
- Walkers: Walkers can assist children with cerebral palsy with their mobility issues.
- Walking Sticks and Canes: Walking sticks and canes are a cost-effective option to help with mobility issues.
- Standers: Standers allow those with cerebral palsy to stand for short or extended periods of time.
- Lifts: There are different kinds of lifts, including stair lifts, ceiling lifts (which help transfer the individual from device to device within a room, or from room to room), and sit-to-stand lifts.
- Wheelchairs: Common mobility aid for those with cerebral palsy who are non-ambulatory.
- Power Scooters: An alternative to the wheelchair that can be less expensive than a power wheelchair.
Children with certain types of cerebral palsy struggle with the ability to communicate due to symptoms such as muscles spasms in the throat, mouth, or tongue. Assistive communication devices empower a child with CP to contribute meaningfully to conversations and form friendships and relationships. An electronic communication board is a tool that allows children to choose letters, words and phrases on a screen to verbally express their thoughts and emotions. The level of training needed to operate a communication board depends on the child’s existing level of literacy, as they may need to be taught the meaning of symbols and images before using the device. This can be done in speech therapy, where a Speech Language Pathologist (SLP) will teach the child how to use the assistive device to communicate.
Often, individuals with cerebral palsy have difficulty moving their arms, wrists, hands or fingers. This can make selecting images or symbols on a communication board difficult. For these individuals, there is eye-tracking technology available that eliminates the need to actually push a button or use a pointer. Eye-tracking devices are incredibly helpful for children with a more severe level of cerebral palsy that limits their upper limb mobility. This type of technology is often utilized during speech therapy and treatment to improve the ability to express thoughts and ideas.
Daily Life for an Individual with Cerebral Palsy
Areas of daily life that can present a challenge include brushing one’s teeth, washing and drying hair, putting on makeup, dressing and undressing, preparing and eating meals, socializing with others, and traveling. Use of the appropriate assistive devices can help an individual with CP to be as independent as possible. These assistive devices, along with the use of appropriate medications to control symptoms, can help an individual with CP to live a healthy and fulfilling life. As one grows to adulthood, the need for assisted living arrangements may be needed.
- Specialized diets and feeding techniques can be used to boost nutrition and digestive health.
- Early socialization is important to help the child with CP to form relationships. Socialization can be encouraged though buddy programs, play therapy, support groups, summer camps, and after school programs.
- Traveling tips: When traveling by car, first take shorter practice trips, make frequent stops, pack a cooler with any specific snacks/food your child needs, and if your child uses a wheelchair, plan ahead to make sure your destination is handicap accessible. When flying, contact the airline’s special needs department to get optimal seating for your child; take any special food your child needs as these are allowed; label any medications your child may need; and arrive to the airport early.
- Housing options for individuals with CP range from 24-hour assisted home care to independent apartments in assisted communities.
Therapy Dogs Can Help Independence in Cerebral Palsy
Specially trained therapy dogs can be of great assistance, both functionally and emotionally, with an individual with cerebral palsy. Individuals with cerebral palsy often have symptoms that include difficulty with fine motor tasks, balance or walking, and involuntary movements. A specially trained dog can help with tasks involving these issues and thus help the individual become more independent and emotionally fulfilled.
Alternative Treatment Options for Cerebral Palsy
- Energy Therapy.
- Movement Therapy.
- Mind and Body Techniques: massage, acupuncture, hypnotherapy, guided meditation, guided imagery, yoga, breathing exercises, and more.
- Aqua Therapy.
Cerebral Palsy Support Groups
Upon finding out that their child has cerebral palsy, parents often have a hard time coping with such a life-changing diagnosis. Many families affected by cerebral palsy find that joining a support group can be incredibly beneficial. National Support Groups include:
- United Cerebral Palsy (UCP) - https://ucp.org/
- The Arc - https://thearc.org/
- Easter Seals - https://www.easterseals.com/
- Family Voices - http://familyvoices.org/
Many of these national groups have local chapters and affiliates.
Treatment of Cerebral Palsy is a Lifelong Endeavor
In 2003, the Centers for Disease Control estimated that lifetime costs of caring for an individual with cerebral palsy are approximately $1 million, in addition to normal living costs. When adjusted for inflation, this amount equates to nearly $1.4 million (as of 2019.)
The overwhelming cost of cerebral palsy treatment can leave many parents feeling discouraged. Here is where we can help. For over 40 years, The Eisen Law Firm has been holding negligent doctors and hospitals accountable for their mistakes. If you believe your child’s cerebral palsy may be due to a medical error, give us a call at 216-687-0900 or contact us online. We offer free consultations and have successfully handled numerous cerebral palsy cases. In fact, we are a boutique law firm that only handles medical negligence cases.