Of the many conditions that can be associated with cerebral palsy, one of the most common is pain. Pain can take many different forms, be in different parts of the body, and vary in severity by the individual. What all kinds of pain associated with cerebral palsy have in common is that they all cause a person to be uncomfortable and restrict movement and activities, including sleep.
The consequences of living with pain revolve around living a limited life. When a child or adult with cerebral palsy is in pain most of the time, it is difficult to do anything or to enjoy life. There are many ways in which pain can be treated, from surgery to correct orthopedic issues to pain killers. Coping with pain may involve many strategies, but it is an important aspect of living with cerebral palsy.
Pain in Children with Cerebral Palsy
Much of the research that has been done regarding pain in general, and specifically addressing pain with cerebral palsy, has been with adults. Children experience pain too, though, and they respond differently, experience it differently, and need to be treated or it differently from adults.
Some research has emerged that focused on children with both cerebral palsy and pain. Studies with adults have found that up to 84 percent of people with cerebral palsy experience pain and that as many as half feel pain every day.
One study that surveyed 20 children living with cerebral palsy found that 70 percent of them reported experiencing pain and 64 percent described the pain as a real problem for them. The spastic type of cerebral palsy, characterized by increased muscle tone, seems to cause more pain than other types.
This may be because these overly-toned muscles tend to contract and may cause deformities, misaligned joints, and movement problems that result in pain. Hip pain has been reported as the most common complaint regarding joint and muscular pain.
Another issue is gastrointestinal pain. A study of 58 children with cerebral palsy found that almost all of them experienced gastrointestinal distress and that 32 percent had abdominal pain. Other causes of pain are stretching exercises and physical therapy, surgical procedures, and the use of splints, braces, casts, and other devices.
The Consequences of Pain
Most people understand what it is to have pain, but not all have experienced the kind of chronic pain that a child with cerebral palsy may have to live with indefinitely. There are many consequences of living with pain, especially if it is not treated or lessened by medication or other treatment strategies.
For a child with pain, life becomes more difficult and limited. A child may not want to move, go out, participate, or go to bed and sleep, because doing these things are difficult with pain or may cause more pain.
Studies have found that children with cerebral palsy experiencing pain are more likely to struggle with anxiety, frustration, and fear. They are at risk for developing depression and for withdrawing from normal activities. Because treatments for cerebral palsy, like physical therapy exercises, may cause pain, another consequence is often withdrawal from or lack of interest in therapy. This can have a serious impact because therapeutic treatment will reduce pain and increase mobility in the long run.
Pain can also impact a child’s behavior. Being in pain frequently may cause a child to lash out, to be more aggressive, or to avoid school, social situations, and other activities. Relationships can suffer when a child experiences pain, as can the possibility of gaining independence for a child with cerebral palsy. Simply not enjoying life fully is also an important consequence of living with pain.
Managing Cerebral Palsy Pain with Medications
Medications can be used as one strategy for reducing pain in children with cerebral palsy, although it is not typically used alone. Anti-spastic medications can be used to relax over-toned and contracted muscles, which in turn reduce pain. Anticholinergic drugs are used to treat muscle spasms as well. Medications that treat gastrointestinal issues may help, while anti-inflammatories can be used to reduce general pain.
Baclofen is among the most common medications used in children with cerebral palsy. It is an anti-spastic drug and it relieves the stiffness in muscles that causes pain. This is not a simple drug to use, as it must be delivered through a pump that has been implanted in the child.
Surgery comes with its own risks, and at least temporarily may cause more pain for a child. For many, although the treatment does requires surgery, this medication provides much needed relief.
Botox and Pain Relief
Botox is botulinum toxin, a toxic substance that can be injected into the body to paralyze specific muscles. The effect is temporary, lasting a few months.
For a child with cerebral palsy, this paralysis relieves the pain associated with a spastic, contracted, over-toned muscle and provides relief for a few months at a time. Physical therapy is usually used along with Botox injections to help improve pain over the long-term.
Surgery for Cerebral Palsy Pain
There are many different kinds of surgery that a child with cerebral palsy may undergo. The procedure depends on the underlying problem causing pain. For instance, if hip problem is severe or other interventions do not help, a surgeon can manipulate the joint to put it into better alignment.
This in turn will allow the child to walk with a gait that causes less pain. Most underlying musculoskeletal complications of cerebral palsy have the potential to cause pain and may be treatable with surgical procedures.
An extreme, but sometimes necessary type of procedure for relieving pain is called a selective dorsal rhizotomy. It involves severing nerves that are overactive. This surgery is only used to relieve pain when other options, including other surgical procedures, have failed to help.
Other Ways to Manage Cerebral Palsy Pain
Physical therapy is a common type of treatment for mobility and movement issues associated with cerebral palsy. It can also be a source of additional pain, but over time this kind of therapy can lessen pain by improving range of motion, aligning joints better, and helping a child to move in ways that will cause less damage and less pain.
Other strategies that can help relieve pain include muscle massage, acupuncture, ice packs and heat therapy, hydrotherapy, and cognitive behavioral therapy. For reducing pain during sleep, and to achieve better quality sleep, learning how to position a child in bed can be a great help. This may mean using special equipment to support a child in the best position or simply learning which sleep position works best to reduce pain and allow for better sleep.
Addressing, evaluating, managing, and treating pain is so important for children with cerebral palsy. Pain is among the most common conditions or complications associated with cerebral palsy and more research is needed to help children specifically.
As a parent of a child with cerebral palsy it is crucial that you listen to your child and find out when and how she experiences pain. With the assistance of a medical and therapy team, you can determine which strategies and treatments are most effective for reducing her pain and helping her live a better and more fulfilling life.