This look at the best therapies for children with cerebral palsy and brain injury is adapted from the new book The Boy Who Could Run But Not Walk by Karen Pape, MD. I've known about Dr. Pape for years—she is one of the most warm, practical, innovative, inspirational, hope-giving doctors out there with a focus on cerebral palsy. Her book is the same. It is filled with helpful, clear-cut information; inspiring and telling stories about children's improvement; and so many words of encouragement. It is a healing book not just for children but their parents, too.
A neonatologist and clinical neuroscientist, Dr. Pape has challenged the one-time belief that babies born with early brain and nerve injury were out of luck, making the case for neuroplasticity and the ability of the brain to heal. The title of the book refers to children with cerebral palsy who can run better than they can walk—they had learned to walk while their brains were still damaged and immature, and learned to run after once their brains had time to recover.
What to do in the first four years
Massage
It is common practice to recommend massage and stretching once CP is diagnosed, but research studies done later in childhood when spasticity is firmly established have demonstrated that stretching did not have much effect on established spasticity. Why not try it earlier? Starting at four years or later is clearly too late.
Experienced athletes understand that stretching and massage improve recovery, as well as maintaining flexibility. Most adults automatically stretch when they have been hunched over a computer for a long time. My dog stretches every time she gets up from a nap. Babies stretch in the same way when they wake up. Children who have an early neurologic injury can't do it on their own. They need help. It seems obvious to me that we should be doing this work with them as part of the daily routine. At least twice a day, every day, until they stop growing.
Start right, stay straight
Babies first investigate their hands with their mouths, and then gradually, between three and six months, use them to reach for things that they see. Babies with an early brain or nerve injury rarely go through this exploratory stage. When the child with impaired motor control tries to get her hand up to her mouth, she turns on all muscles, causing the hand to fist, the elbow to flex, and the shoulders to lift up. This sets off a chain reaction that stiffens the same side of the body. The medical term for this whole-body reaction is "activity-dependent tone."
Once the infant can be put in the upright position, trunk support is the requirement. Compressive garments allow the child to strengthen her trunk muscles in the correct position. They give the child a better sense of where he is in space. The vest allows the parents to "take the therapist's hands home."
Correct alignment leads to awareness, which is just as necessary in the toddler and young child as it is in the infant. If the hand is not in view, the brain will forget about it. If the hand is not supported in a position of use, the child will not use it. Once the child knows about the hand, the child can use it to develop new skills. This concept is not complicated: The brain pays attention to what it is aware of, so the most important task is to facilitate awareness in the best possible alignment.
Water exercise
I know of no other form of therapy that is better for all-around strengthening and improving cardiovascular fitness in children and adults with a neurologic problem. Tone increases as the child moves against gravity, and it decreases when he is in a gravity-reduced environment. For toddlers and young children, water is a fun-filled play environment where they can escape from the negative pull of gravity.
Just about any flotation device that holds the child's body upright will work in the young. Traditional life jackets do not work as they tend to keep the child at a backwards angle to keep the face out of the water. The idea is just to support children upright in the water and then encourage them to move. It will take a bit of time, but it is a novel challenge and they will eventually discover how to activate their muscles and fire them reciprocally.
On land, in gravity, the bully spastic muscles dominate, but in the water the muscles quickly learn to relax and work cooperatively. I have seen great results, even in children with complex forms of cerebral palsy like athetoid quadriplegia.
Bracing
If the child is given adequate bracing early, the tone in the legs can be dramatically reduced. The most commonly used lower-limb brace is the ankle foot orthotic. Unfortunately, a survey by the American Orthotic and Prosthetic Association discovered that the average age for this brace to be prescribed was three to four years old. At this age, in most children with cerebral palsy, the ship has sailed. Using AFOs early still gives the supple foot support in the correct alignment and inhibits the spastic reflex loop. But they have to be used consistently, whenever the child is upright, to have this effect.
The take-away lessons are simple: The brain learns from the body. We have to provide the needed supports so that the child learns to move well from the start. Once a maladaptive brain or body habit is established, it is hard to replace with a better movement pattern. Function allows form; even peak-performance athletes wear supportive garments and orthotics to help their bodies maintain good form.
What do in the middle years
By the time a child is referred to a cerebral palsy center for therapy, he has a well established movement pattern. The negative feedback loop is in place with wired-in circuits in the brain and well-practiced maladaptive movement habits in the body. Yet there are proven therapies, including surgery, that can help children learn new habits of walking and moving.
Maintain upper-limb alignment
One of my favorite research trials used a simple experimental design that tested the hand function of a group of four-to-eight-year-olds with hemiplegia. It measured just how often the hand on the side of the hemiplegia was used as an assist in tasks such as holding a paper, while the other hand cut it with scissors. When a hand splint was on, there was an immediate and extremely significant improvement.
If the hand and wrist are in good alignment, the child is better able to use the hand, and if she uses it, we now know that those atrophied, disused parts of a brain have a chance to wake up and be useful. But, without use, there can be no persistent change. Relatively inexpensive wrist and hand splints can provide good alignment in a child with a good range of motion in the joints. If the spasticity habit is too well established, medications like Botox injections can tone down the tight muscles and serial applications of casts can restore normal joint movement in most cases.
Gait training
In most cases, with established spasticity, the child will need to have one or more effective treatments for spasticity to allow more normal movement before any type of leg brace is likely to work. In children with severe spastic diplegia, affecting both legs, neurosurgeons are interrupting the negative feedback loop with selective dorsal rhizotomy therapy as early as in two-year-olds. Botox is approved at two years as well.
Additionally, some innovative orthopedic surgeons have developed relatively non-invasive surgical procedures to help correct alignment in the early years. Selective Percutaneous Myofascial Lengthening, also known as SPML or PERCS, is a day-surgery procedure that has been shown to help interrupt the progression of muscle and tendon tightness in the leg.
Replacing habits
Replacing habits with new ones at any age is hard work, and requires focus on one goal at a time. This is how humans learn. I have used an athletic approach to the treatment of CP for years, and I've found it helps. To start with, whether you're a world-class athlete or a seven-year-old girl with CP, you need a goal—like walking independently. Then you need to break it into short-term goals that are measurable, so that everyone can see the progress and update the programs as necessary. All the therapists involved in the care of the child should be working toward the same goals.
All the research in cerebral palsy supports the concept that targeted, intermittent, intensive training gives the best chance of improving the level of performance. Think of the change in performance achieved at a hockey, golf or tennis camp. One, two, or a few weeks of focused intensive work on a goal that is important to a person creates change. And with change comes motivation.
There are techniques that have been proven to help children with CP learn to cast off their bad habits and reach their full potential for better movement. Water exercise with a Wet Vest, for instance, allows children to integrate and actively participate with able-bodied peers without damaging their bodies. Hippotherapy, riding a horse, is another good example of child-active rehabilitation that is a promising intervention. It is also important to recognize the role of adapted sports programs like BlazeSports or AccesSportAmerica that challenge the child to achieve new goals in social integration and improved fitness and health. Novel, challenging tasks spark neuroplasticity.
How teens can make new habits
The teen years are the second peak of neuroplasticity. Most of the change is in maturation of functions and improvements of the interconnections between different brain areas. Their frontal lobes, the centers of higher cognitive function, are coming online. This means that teenagers start to develop their own opinions and can be motivated to work hard for a distant goal. They can now access new parts of the brain to improve both motor function and speech. This period is a prime opportunity to work around established maladaptive habits.
Managing spasticity in an older child or a teen is now possible, and several promising options are available, including botulinum toxin, selective dorsal rhizotomy, the Baclofen pump, and various orthopedic surgeries. Each of these interventions has been shown to be effective in research trials. Surgeries have completely changed the outlook for older children and adults who did not have their spasticity and bodily distortion controlled earlier in life.
"I actually like working with older kids because at some point they become personally invested in what they are doing," says physical therapist Christine Egan. "It is not somebody else wanting them to be better. It is more of an internal motivation. Not doing it for Daddy, or whatever."
For most teens with CP, it is not too late to get better. They have a great opportunity to grow and heal while their brains and bodies are growing at an extraordinary pace. They need a new type of therapy based on an athletic model. Doing more of the same old, same old but harder will not work. They need measurable, achievable short-term goals and a rigorous training schedule that is both challenging and, more importantly, fun.
You can read more about Dr. Pape's work—and check out her wonderful blog—on her website and buy the book here. If you haven't seen her wondrous TEDx talk, watch it here.
Adapted with permission from The Boy Who Could Run But Not Walk by Karen Pape, MD, with Jonathan Webb © 2016, Barlow Book Publishing Inc.