Pain in people with cerebral palsy is very common, and probably not evaluated frequently enough.
A lot of people with cerebral palsy will experience pain over the course of their life. Through better assessment we can provide better interventions, which will lead to a better quality of life.
Cerebral palsy refers to a group of conditions that are caused by problems in brain development and that affect how movement and motor control happen in children. Problems with walking and talking are often the way people start a conversation about cerebral palsy.
As your child with CP is becoming a teenager, there are a couple of things you may want to think about.
It's important for all of us who are imposed with certain physical boundary conditions to push those boundary conditions as far as possible and maintain as much independence as absolutely possible.
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
Children with cerebral palsy have more complex self-management and self-care demands than children who are typically developing. They have to learn how to deal with medications and they may have to deal with medical equipment. At some point, they're going to have to learn about medical appointments.
I have cerebral palsy spastic diplegia. So it affects my legs and sometimes my fine motor skills. I walk with two canes. I do things a little slower, but I get things done.
One thing that parents can say to start a conversation with their kids is, "Let's talk".
As we all know, becoming a teenager means significant upheaval, not only physically, but in terms of friendships, in terms of learning, and life outlook. This is also true for adolescents with cerebral palsy and other developmental disabilities. We know that whilst we may of spent a lot of time focusing on their physical abilities and other difficulties it is not the only part of their life.
I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
There are so many different causes for potential pain that it can be hard to find the cause. If you have CP or are a parent of someone with CP it is really important to empower yourself with information on pain including what causes it and options for treatment. You need to work out what is causing the pain not just mask it with pain medication.
One of the things that was identified through research is that patients with cerebral palsy have higher rates of depression and anxiety than you would see in the general population.
One of the things that we typically forget when we look at kids who have conditions like CP, is that they're first and foremost, children.
It is important to understand the brain injury for each individual person, because they can be really different. Where the injury is can give us important clues to what motor problems that individual will have. The time you have the biggest risk to having a stroke is as a baby, not as an adult so it is important to understand what may be happening in the infants brain.
Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Depending on the part of the brain that is injured depends on how someone’s muscle tone will be effected. For people with spastic CP they have increased muscle tone because of the part of the brain that's injured. If causes very tight muscles which in turn effects the movement of the joints and of the limbs. For others who have dyskinetic CP they lose the ability to have voluntary control over their muscles, and they can have jerky and uncontrolled movement patterns.
Upper limb therapies and interventions have been well studied in cerebral palsy. Different interventions that have good evidence are Constraint Induced Movement Therapy (CIMT) and Bimanual Therapy. CIMT has been shown to be successful in children with hemiplegic cerebral palsy (CP). CIMT uses a splint to physically constrain the uninvolved arm and encourage them to use the more involved or affected arm.