When a child is in pain, it’s impossible for him or her to focus on the many wonderful aspects of being a child. That’s why finding the right solutions to manage, or eliminate, pain is one of the most important medical decisions a parent will make.
Pain management and Cerebral Palsy
For children with Cerebral Palsy, pain falls into two categories: pain felt after surgery or another medical intervention, and pain felt every day because of the condition of his or her body. Though the former is something that a child will have to cope with during times when his or her medical team has identified surgical solutions meant to prevent pain during the long term, the latter is one that proves to be more devastating.
Pain that is the result of spasticity, or from musculoskeletal malformations or even from sitting in a wheelchair for several hours a day must be addressed when there are no other feasible alternatives. For parents of a child with Cerebral Palsy, pain management is an every-day proposition comprised of therapies, medications, and communication – there has to be a constant effort to relieve pain on the part of physicians, and parents.
Once effective pain management strategies are identified and implemented, a child will be able to focus on the other aspects of childhood: going to school, making friends, and having fun.
What is pain management?
Pain management is a branch of medicine that focuses on relieving discomfort and improving the quality of life of those who have chronic or intermittent pain. Although pain relief measures are employed after a person has surgery, pain management typically aims to relieve pain that is the result of ongoing physical issues.
Studies regarding children with Cerebral Palsy that experience pain have varied results. One study determined that about 25 percent of children age 3 years old to 19 experience pain; another showed that 70 percent of children have pain issues. Another study showed that 92 percent of children with gastrointestinal symptoms experience chronic pain.
Pain in children with Cerebral Palsy has several sources. Some of the root causes of pain include:
- Orthopedic pain – Deformed bones, misplaced bones, hip subluxation, bone degeneration
- Gastrointestinal pain – Impaired orofacial function, aspiration, incontinence, constipation, malabsorption
- Surgical pain – Pain derived from surgical procedures, or invasive procedures
- Rehabilitative pain – Discomfort that results from taking part in physical and occupational therapy
Managing pain is a multi-practitioner discipline; physicians, nurses, psychologists, physical therapists, occupational therapists, and other clinicians work to develop an approach that works for the patient. One of the goals of pain management is to identify the underlying causes of pain, and what procedures, medications or therapies will produce the desired results.
All pain management strategies are based on a child’s individual symptoms. An individualized approach to pain management may include:
- Non-invasive treatments
- Psychological treatment
Although more invasive procedures to relieve pain will bring about long-lasting results, interventions that are less invasive are often performed first. This means that managing pain will likely not be a one-time intervention; it will likely involve coordinated, ongoing efforts. Decisions that physicians will make regarding pain management will depend on a child’s physical condition, so every case solution will be highly individualized.
Why is pain management required?
Pain management is required for every child with Cerebral Palsy because the discomfort can bring severe consequences in terms of his or her health, and his or her happiness.
If a child is in constant or even intermittent pain, he or she will not be able to focus on the other aspects of his or her life, like learning and spending time with his or her family. But the most serious consequence of pain is that it is an indication of something wrong; if a person feels pain, there is a cause, and the cause can be either life-threatening, or affect the quality of a person’s life.
Addressing pain has a significant benefit in other areas of a child’s life. If he or she experiences less pain, it removes barriers to their willingness to participate in physical therapy, which allows children to enjoy physical activities.
Those underlying issues often require treatment, which is why physicians will continually monitor a child’s pain to make sure he or she is as comfortable as possible, and to make sure any health concerns are rectified promptly and effectively.
What conditions cause a child with Cerebral Palsy to have pain?
Because of Cerebral Palsy’s effects on the neuro-musculoskeletal system, the propensity for conditions that cause pain are abundant. In cases that are mild, pain and discomfort might be minimal; in severe cases, pain can be intolerable.
Depending on a child’s condition, secondary issues can be a significant cause of pain. For instance, if a child uses a wheelchair for a significant amount of time per day, the act of sitting in the chair can be painful. But most often, pain will be dependent on the type of Cerebral Palsy a child has, and the severity of his or her condition.
The most common causes of pain that a child may suffer from include:
- Motor dysfunction
- Joint dysfunction
- Hip subluxation
- Respiratory problems
- Intestinal problems
- Urinary tract infections
- Nerve injuries
- Spinal and back pain
The reasons these conditions cause pain are complex. Spasticity, the most common form of Cerebral Palsy, causes pain because it causes functional problems that can lead to contractures and cartilage degeneration. Also, spasticity is linked to a chronic shortening and misalignment of muscles that require surgical and non-surgical interventions to correct. This is in addition to pain caused by muscle spasms and tremors.
Orthopedic conditions are also a significant source of pain. Range of motion and immobility conditions are the primary source of pain. Children who have problems that cause them to be immobile suffer from several symptoms that, if not addressed, can cause pain. Often, these conditions cause a child to undergo one or more orthopedic surgeries.
These conditions include:
- Nerve entrapments
- Skin issues
- Inconsistent muscle tone
- Congenital dislocation
- Arthritis caused by bone misplacement
Orthopedic pain occurs in several areas of the body, including:
What methods do physicians employ to relieve pain?
When it comes to relieving pain, physicians have several weapons in their arsenal that can be used to help a child. Because each child’s case of Cerebral Palsy is unique, the solution to a child’s pain will be very unlike that used to treat another child.
Generally, pain management may include therapies, medications, non-invasive or minimally invasive measures, and finally, surgery. In some cases, a child may only have to take medication to control pain. But in others, a child may have to undergo several surgeries as they grow to make sure pain is kept at bay.
The first line of pain intervention often begins with physical and occupational therapy. During sessions with a therapist, children may engage in several exercises designed to improve a child’s ability to move. Also, children will be outfitted as needed with orthotic devices or adaptive equipment that, in many cases, bring stability to limbs that may be in pain for a variety of reasons.
The activities that children may take part in during a therapy session include:
- Strength exercises
- Range-of-motion exercises
- Endurance training
- Stability training
One of the most common solutions to pain the physicians will employ is medication. Depending on a child’s needs, medication can be simple, over the counter medications such as Tylenol (acetaminophen), NSAIDs or laxatives. But sometimes, stronger medication is needed to bring pain relief to a child. In these instances, physicians will often look for medication that blocks pain signals that originate in the brain.
The type of medication used will depend on the underlying causes of a child’s pain. Children with spasticity often are prescribed anticholinergics or anti-spastic medications to control unwanted movements. Because spasticity is a very common condition among children with Cerebral Palsy, these are some of the most common remedies physicians use to help relieve pain.
Children with more severe Cerebral Palsy may be prescribed medication such as opioids, such as oxycodone, to relieve pain. Also, any child that undergoes surgery will likely be prescribed strong pain medications to help maintain some semblance of comfort.
The most common medications used to treat pain in children and adults with Cerebral Palsy include:
- Anticonvulsants – Medication used to reduce seizure activity, and reduce the intensity of seizures.
- Anticholinergics – Used to treat uncontrolled movements and spasms caused by spasticity, dystonia, athetosis, or chorea. Medication stimulates the central nervous system.
- Anti-spastics – Used to relax muscles by relieving muscles that are over-contracted or stiff. Medication can also reduce spasticity and tremors.
- Anti-inflammatories – Used to relieve pain by reducing inflammations of the muscles and joints.
- Opioids – Analgesic prescription medication used to relieve severe pain.
- Stool softeners – Used to relieve constipation, which can bring significant relief from abdominal pain.
- Antidepressants – Used to relieve symptoms of depression and anxiety. Active ingredients alter a person’s mood.
One of the most common drugs used to treat spastic pain is Baclofen, which relieves stiffness. The most common mode of delivery is by a method called Intrathecal Baclofen Therapy, or ITB. This requires the drug to be delivered via a surgically-implanted pump in the abdomen. The medication is delivered into the spinal fluid by a small tube, and the pump is operated by a computer.
In terms of medication delivery systems, the more complex the drug, the more complex the delivery method. Variance does exist in how the medicines are delivered; opioids, for instance, may be taken orally, absorbed by a patch, or delivered intravenously.
Medications used to relieve pain are generally considered safe, but all drugs carry some side effects. When a physician identifies a potential course of action on a child’s behalf, he or she should be able to explain the risks and side-effects associated with medication.
All medications – even if they are purchased over-the-counter – should be strictly monitored by a child’s physician as well as his or her caregiver.
Non-invasive and minimally-invasive pain solutions may also be used to relieve pain, though not all of them may be appropriate for young children. These treatments range from using pulsed light to Botox injections to inserting a spinal cord stimulator to block pain receptors.
Botulinum toxin, or Botox, was discovered to be effective against certain types of pain because of its numbing effects. Pulsed radiofrequency, neuromodulation or nerve ablation, may be used to target pain receptors. A spinal cord stimulator, which is an implant that delivers electrical impulses to the surface of the spinal cord, can also alter a person’s perception of pain.
Surgical interventions should be considered a last resort. Sometimes, surgical intervention is the only hope for relief for a child; often, surgery may have to be performed more than once before a child reaches adulthood.
Surgery generally falls into the following three categories:
- Orthopedic surgery – Often recommended for children with spasticity, an orthopedic surgeon can lengthen muscles and tendons in the legs to make walking and ambulating less painful. As a child ages, this surgery may have to be repeated so a child can maintain his or her ability to move pain-free.
- Selective Dorsal Rhizotomy – A surgery that involves the location, and the severing, of over-activated nerves. This surgery is only recommended after other remedies, such as drugs or physical therapy, have failed to reduce spastic pain.
- Spinal surgery – Spinal fusion can help bring stability to a person’s spine, which greatly reduces pain.
Following surgery, pain needs must also be met to ensure a child’s comfort. As a child recovers, he or she may be fitted with splints, casts, or orthotic devices to stabilize a child’s limbs.
All surgeries related to pain relief and Cerebral Palsy are considered safe, but all surgery carries the risk of infection, or a reaction to anesthesia.
How will pain management affect my child?
Pain management is considered a safe and necessary part of treating Cerebral Palsy. Each procedure – especially those that are invasive in nature – carries some risks. These risks include infections, undesirable outcomes, or reactions to anesthesia. But the real risk, if pain is not managed properly, is that a child will experience a life filled with pain.
Children that don’t undergo pain management, or endure interventions that are unsuccessful, may experience:
- Fear or anxiety
- Social withdrawal
- Inability to cope
Managing a child’s pain in an effective manner will ensure that a child can meet his or her goals physically, psychologically, functionally and socially. Being free of pain will allow a child to thrive, participate in therapies designed to enhance his or her life, and take part in all of the activities other children their age enjoy.
Who performs pain management?
Pain management is a highly-coordinated, multi-disciplinary approach that, if a child’s pain is significant enough, will involve all members of a child’s medical team, and several specialists.
During the past several years, the fact that many Americans suffer from chronic pain has been recognized by the medical community. This gave rise to medical practices that specialize in pain management. But the physicians that treat pain at these practices are likely to come from varied specialties.
From a practical standpoint, however, a parent does not necessarily have to seek out pain treatment for his or her child at a pain management center. A child’s pediatrician may be able to work together with physical and occupational therapists to address a child’s pain. Or, he or she may refer a child to a specialist that can implement further interventions.
However a child’s pain treatment plays out, a parent’s role is to make sure outstanding issues – from an initial assessment to the conclusion of treatment – are addressed.
Pain management occurs in several settings, including:
- Doctors' offices
- Pain management clinics
- Assisted living facilities
- Nursing homes
- Rehabilitation centers
- Therapy clinics
An individual approach to a child’s pain management needs will be the deciding factor in terms of what professional will work with a child. If a child has mild Cerebral Palsy, pain management may consist only of physical and occupational therapy, and regular medication. In other cases, several specialists may be involved in mitigating a child’s pain.
During an initial assessment, a pediatrician will examine a child’s medical files, and conduct a physical examination. He or she may also order tests to help pinpoint the source of a child’s pain. This assessment will help determine who should be involved in providing pain management, and how extensive an intervention is needed.
Some of the specialists that may provide pain management include:
- Orthopedist – An orthopedic physician specializes primarily in bone and muscle disorders, which are a frequent source of pain for children with Cerebral Palsy. He or she can diagnose and choose treatments – including surgery – that will help relieve problems such as musculoskeletal issues or uncontrolled muscle movements, among other conditions.
- Neurosurgeon – A neurologist specializes in the diagnosis and treatment of conditions of the brain, central nervous system, and spinal cord. A neurologist will be able to determine what brain impulses may be contributing to a child’s pain or affecting their levels of balance and strength.
- Rheumatologist – A specialist who treats autoimmune and connective diseases that inflame the joints and soft tissues. Most often, a rheumatologist will be consulted if a child develops arthritis.
- Neurologist – A physician that focuses on non-surgical solutions for a child’s pain that involve the brain, central nervous system or spinal cord.
- Physiatrist – A physician who focuses on chronic illnesses of the musculoskeletal system. A physiatrist looks for non-surgical solutions and non-invasive treatments to help ease a child’s pain.
- Pediatrician or primary care physician – A child’s regular doctor is going to provide the first line of defense against pain. In many cases, a pediatrician can identify sources of pain and prescribe medication or offer other solutions to parents. However, he or she may refer a child to a specialist that can provide a more specialized solution for a child.
- Nurse practitioner – A nurse with specialized training that may diagnose and treat some issues that cause pain. Most often, nurse practitioners conduct evaluations and work in collaboration with physicians.
- Physical therapist – A professional that helps people with disabilities hone their mobility and ability to ambulate. A physical therapist can devise ways that a child can increase his or her movement that will minimize stress on joints, muscles and bones, which will minimize pain and injury.
- Occupational therapist – A therapist that helps a child develop coordination, dexterity, and strength so that a child can complete tasks that require the use of fine motor skills.
- Chiropractor – A professional that focuses on restoring proper alignment in the spine, and restores proper motion of the body’s joints. By addressing both of these issues, pain caused by faulty alignment and joint motion can be significantly reduced.
- Massage therapist – A professional that focuses on soft tissues and muscles. By manipulating the soft tissues by hand, massage therapists reduce pain by helping to improve blood circulation to affected areas.
What certifications do pain managers need to practice?
There is no one certification or licensure required to practice as a manager of pain. However, all professionals that practice medicine or therapy are subject to individual certification requirements to practice their specialty.
All medical professionals should have the required training, internships, fellowships and other credentials required to practice in their field. An easy way to determine if a physician holds the proper credentials is to contact the state department of health in which a child lives to find out what those requirements are. Because the additional step of licensure is required in most states, the health department should be able to tell you if a physician met licensure requirements (which include certification), and whether the medical professional’s credentials are up-to-date.
How to tell if a non-verbal child is experiencing pain
Detecting whether a non-verbal individual is experiencing pain can be difficult. Children may lack the ability to identify and describe their pain. And, parents may have limited experience or training in their ability to notice and decipher indicators of pain.
With the trend towards moving adults with intellectual or developmental disabilities from institutional care into community-based settings, health care providers are becoming increasingly knowledgeable in identifying pain through alternative pain assessment methods.
Studies indicate that individuals with developmental disabilities, including Cerebral Palsy, experience higher rates of both acute and chronic health concerns, require more surgical and medical procedures, and have higher prevalence of pain yet they are often under treated for pain or not treated at all due to a lack of ability to recognize or assess pain levels.
Individuals able to communicate their pain levels are encouraged to self-report their pain to the best of their abilities; however, there are behavioral pain assessment tools for individuals unable to self-report. These tools are detailed in the “Pain Assessment in the Nonverbal Patient: Position Statement with Clinical Practice Recommendations” published in 2006 by the American Society for Pain Management Nursing, or ASPMN.
The ASPMN recommends the following assessment steps for adults:
- Search for potential causes of pain
- Observe patient behaviors
- Surrogate reporting of pain and behavior/activity changes
- Attempt an analgesic trial
- Establish a procedure for pain assessment
- Use behavioral pain assessment tools, as appropriate
- Minimalize emphasis on physiologic indicators
- Reassess and document
For infants and preverbal children, the following assessment steps are recommended:
- Search for potential causes of pain and discomfort
- Observe child’s behaviors
- Check physiologic indicators
- Use behavioral pain assessment tools, as appropriate
- Rely on surrogate (family or friends) reporting of pain
- Initiate an analgesic trial
Behavioral pain assessment tools for children unable to communicate may include:
- Children’s Hospital of Eastern Ontario Pain Scale
- COMFORT Behavior Scale
- Distress Scale for Ventilated Newborn Infants
- Faces, Legs, Activity, Cry, Consolability Observational Tool
- Douleur Enfant Gustave Roussy Scale
- Premature Infant Pain Profile
- Riley Infant Pain Scale
- University of Wisconsin Children’s Hospital Pain Scale for Preverbal and Nonverbal Children
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Therapy for Cerebral Palsy
A person’s ability to transcend his or her physical limits is in no small part due to the kinds of therapies that are used to fine-tune his or her abilities. Therapy fosters functionality, mobility, fitness, and independence. The types of therapies vary based on a person’s unique needs, type of Cerebral Palsy, extent of impairment and associative conditions. Therapy can also help parents and caregivers.
Therapy for Cerebral Palsy includes
- Aqua Therapy
- Behavioral Therapy
- Chiropractic Intervention
- Conductive Education
- Intensive Suit Therapy
- Massage Therapy
- Music Therapy
- Nutrition and Diet Plan Counseling
- Occupational Therapy
- Physical Therapy and Physiotherapy
- Play Therapy
- Recreation Therapy
- Respiratory Therapy
- Sensory Integration Therapy
- Social Therapy
- Speech and Language Therapy
- Vocational Counseling
Cerebral Palsy affects muscle tone, gross and fine motor functions, balance, coordination, and posture. These conditions are mainly orthopedic in nature and are considered primary conditions of Cerebral Palsy. There are associative conditions, like seizures and intellectual impairment that are common in individuals with Cerebral Palsy. And, there are co-mitigating factors that co-exist with Cerebral Palsy, but are unrelated to it. Understanding conditions commonly associated with Cerebral Palsy will enhance your ability to manage your child’s unique health concerns.
Common associative conditions
Click on a condition listed below to learn more.