My last post, “Why Not Go For Gold?” has stirred up a bit of a controversy. I have had feedback from parents and professionals who are happy that somebody has finally defined the need for a quest for cure, but I have also gotten pushback from some individuals and organizations who feel that any quest for a cure is synonymous with building false hopes and expectations. This difference, one group supporting the status quo of “No Cure for CP” and the other pushing for better outcomes (also known as Going for Gold) is not a new controversy in the larger world of disability. However, it is a relatively new conversation in the field of pediatric neurorehabilitation.

It may be beneficial to look back to see how this issue has played out in other disability groups. Midway through the last century, a traumatic spinal cord injury was associated with a very high mortality rate. Patients died of respiratory complications, renal stones and infections, and many died from an infection that started in a simple bedsore. The American Paraplegia Society was founded in 1954 and incorporated in 1977. The primary goal, on their website, states they are “dedicated to improving the quality of medical care delivered to persons with spinal cord impairment (SCI)”. Nowadays, the APS could be defined as a translational society that examines the results of research data and clinical experience to help standardize and provide access to relevant information to the widest membership. The APS today is a powerful clinical care advocacy group associated with prestigious professional organizations.

http://www.joniandfriends.org/help-and-resources/organizations/american-paraplegia-society/

Then Charles E. Carson had a traumatic spinal cord injury secondary to a plane crash. In 1978, he founded the Spinal Cord Society with a quite different mandate than any of the other organizations. The goal of the Spinal Cord Society is to achieve a practical cure for chronic spinal cord injury. On their informative website, there is a page titled “Milestones to Cure”. This is a comprehensive overview of the progress towards the goal of a practical cure for chronic spinal cord injury.

http://www.scsus.org/milestones-to-cure.html

I was asked to speak at an SCS meeting in the early stages of an active dispute between these two philosophies. At the SCS conference, the banner was “Cure Not Care”. As a physician, I was trained in a discipline (neonatology) that was very comfortable with the concept of going for cure and I found it quite difficult to understand the roots of this conflict. One society funded stepwise improvements in the care of people with a SCI, while another funded research into mechanisms of cure. I thought both were necessary and valuable.

Then spinal cord injury hit the press and public awareness with two injuries to well-known personalities. Rick Hansen and his Man in Motion trip across Canada in 1985 was a powerful impetus for improvement in the care of individuals with a SCI and sparked raised awareness and accessibility, both in sport and world activities. Again, this was valuable work. No one could argue with the concept of more services and programs for those with disabilities. This Foundation has funded clinical research programs to directly improve the number of people able to walk again after a SCI.

Then Christopher Reeve had a tragic riding accident. Always a fighter, together with his wife, he formed the Christopher and Dana Reeve Foundation. If you look for the mission statement of the Reeve foundation, you’ll find that it is “dedicated to curing spinal cord injury by funding innovative research, improving the quality of life for people living with paralysis through grants, information and advocacy”.

http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.4434137/k.287B/The_Basics.htm

Initially, in the 1970-1980’s, there was a clear difference in the goals of people in the spinal cord injury groups. However, today, there is evidence of a coming together of the various camps. For example, in 2013, the Rick Hansen Foundation announced a $20,000,000 grant to support the search for a CURE of SCI.

http://www.rickhansen.com/News-Media/Article/198/rick-hansen-foundation-grants-20m-towards-research-for-cures-for-paralysis-afte.aspx

The early Cure, Not Care call of the SCS helped to polarize the debate. With the advantage of time, most people agree that progress is needed throughout the continuum of any injury. My personal choice in the field of Cerebral Palsy is this mission statement from Australia.

“Cerebral Palsy Alliance is a unique organization with a bold vision. Not only do we offer services that make a real difference in the day-to-day lives of people with cerebral palsy, but we also support Australian and international research efforts to prevent and cure cerebral palsy.”

Prevention, Care and the Search for a Cure are BHAG’s (Big Hairy Audacious Goals). Improved care and possibility for those who are currently affected by CP is an immediate issue, but prevention and cure have to be integrated within that same matrix. Olympic athletes do not train to finish the race. Neither do they train for a bronze medal. They all know that only one person in each race gets the gold medal, but the quest for gold raises the standard of performance for everyone towards the standard of the gold medal winner.

The goals in the cerebral palsy community are set at the level of “No Cure”. The probable reason is that most of our standard medical practices and beliefs were developed during a period of time when it was believed that human brains had a fixed and finite number of cells at birth. Damage after the first few years was considered permanent and irreversible, because brain cells, once injured, could not be repaired or replaced. This is the theory that I was taught in medical school. It was Wrong. Human neuroplasticity exists and there is more of it available to the young.

Neuroplasticity does not mean that all children can or will be “cured” of cerebral palsy. But some will and if we adopt a more positive attitude…an attitude shared by other groups from SCI to Alzheimer’s disease…I believe the standard of care will also improve. In the coming weeks, I will post a series of blogs discussing progress being made in the three areas of Prevention, Cure and Care in the areas of Cerebral Palsy. I welcome your comments.

See Also:

Why Not Go for Gold?
Calling All Outliers
A New Way of Thinking about Cure
Recovery In Cerebral Palsy Takes Time (and Fresh Thinking)
A New Way of Thinking About Recovery – Neuroplasticity Exists
Change Your Expectation, Change the Outcome

Contrast this to the position statement of the American Academy of Cerebral Palsy and Developmental Medicine and United Cerebral Palsy.

“Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same. Cerebral palsy is not communicable. It is not a disease and should not be referred to as such. Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function.

Why is the question of cure an important one? Surely it is true that everyone, in both the pediatric and adult fields, wants the best possible outcome for their patient. This statement is true, but it is a fact of human nature that a goal that is less than complete recovery or cure is less motivating. There is a well-known coaching expression, if you set your goals low enough, it’s easy to be satisfied with your performance.

At an earlier time in my life, I was a neonatologist at the Hospital for Sick Children in Toronto. My chief and mentor, Dr. Paul Swyer, was one of the first pediatricians to focus his care and his research programs on the challenge of curing these tiny babies of the various secondary complications of prematurity. It is worth reading this short description of the difficulties Dr. Swyer and others had convincing their staffs to do something as new and “dangerous” as ventilating sick babies.

http://adc.bmj.com/content/64/4/629.full.pdf

I remember, at the start of my training program, that babies weighing less than 1500 grams (3.3 pounds) were considered too small to survive. Today, babies of 500 grams (1 pound) can have an intact survival. In the early days of NICU care, not all the babies survived and some survived with significant long-term problems. The same is true today, but the survival rates are up and more importantly, the numbers of intact survivors is also far better. Collectively, neonatologists have worked hard to achieve intact survival …aka a cure…and the overall outlook for many babies has been improved by this quest.

What about the survivors of the NICU who were not so lucky? I have been diagnosing and treating survivors of early brain injury for 35+ years and can confidently state that the severity profile of cerebral palsy has changed dramatically for the better. In our early Follow-Up Clinic statistics, there was a high incidence of moderate to severe cerebral palsy with spastic or athetoid quadriplegia predominating. In a recent survey from Sweden, where modern obstetric and NICU care is paired with optimum pediatric care, 48% of the children with cerebral palsy were in the mildly affected range (GMFMS level I).

http://www.biomedcentral.com/1471-2431/7/41

Olympic athletes train for a gold medal. The primary goal of ICU physicians and nurses is intact survival. Patients with a new diagnosis of cancer do not search out a doctor or treatment program whose aim is to “help improve” their diagnosis. Not everyone can be cured of cancer but everybody wants their team to try and that means accepting cure as a first and primary goal. The innovative Beyond Therapy Program, at the Shepherd Center in Atlanta, is a tangible expression of pushing beyond the barriers of traditional neurorehabilitation. (read about my visit to Beyond Therapy)

The people I saw on the day I visited the program had all been discharged from traditional therapy. Some had plateaued and no further gains were expected. Others had reached the functional goals set by their therapy team and again no further improvement was expected. Yet they were all now achieving higher levels of function! It was inspiring to listen to these patients talk about the new levels they had achieved and the next set of even higher goals that they have set. Their long-term goal was to return to their pre-injury status. I have no magic wand to know which ones were going to actually get there, but like athletes in training for Olympic Gold, they had their short and medium range goals to motivate them.

I believe we should aim for a cure in the field of pediatric neurorehabilitation. Baby brains have more neuroplasticity than adult brains and we should expect more recovery, even cure, in children. Setting a goal of anything less than full recovery just does not make sense to me. In my long career, I have seen children achieve complete recovery after well documented early brain or nerve damage. In just about all the cases, I would attribute most of the children’s recovery to “pushy parents” who refused to accept less than a cure as their goal for their child. Not all children will be cured by a change in attitude, but I strongly support the message of the Research Foundation of the Cerebral Palsy Alliance of Australia.

Our Mission: To prevent and cure cerebral palsy.

Our Vision: A future without cerebral palsy.

The team is made up of highly motivated physical therapists, exercise physiologists, therapeutic exercise specialists and athletic trainers who together create individualized activity-based programs of strengthening and activity to optimize neurologic recovery. It was a real treat to see people using a full range of state-of-the-art exercise and mobility equipment as well as water exercise to achieve activity dependent neuroplasticity. The program is also available in Franklin, Tennessee.

www.beyond-therapy.org

In this photo, everything is wrong about the child’s position. As the child tries to lift the arm against gravity, there is increased tone in the entire right side of the body.

The child is not looking at the hand and if she did look, she would only see the back of the hand, not the fingers.

Five minutes later, look at the same child’s arm and hand position. It Is Not Rocket Science! Children with motor control problems of an upper limb need that limb brought into the visual field so that they can learn. Children have to see and play with their hands in order to incorporate them into their body image. Kinesiotape is a terrific technique for use in therapy and can be used at home, in conjunction with other supports.

In the second photo, the child is in a better position and some have argued that positioning can correct everything. In my view, this is unrealistic. Parents need the help of supports to minimize the time in mal-alignment. Since January, when I started this series on alignment, I have received a fair amount of “pushback” from both therapists and parents. Parents have told me that they do occasionally do taping, but I have yet to meet one that uses prescribed splints consistently. What really disturbs me about this is that these same parents are quite willing to put the child’s “normal” hand in a constraint device for several hours a day on a regular basis. I believe in Constraint Induced Movement Therapy (CMIT). Its usefulness is not in question. It has been shown to be effective in both BPI and Cerebral Palsy. However, there is a big difference between how a technique is used in a randomized controlled trial and how it is used when it is transferred into a regular therapy session.

A key component of this technique is that the affected hand be able to be seen and supported, if needed. It does not work if the affected hand is in a fisted position, out of sight. Using any intervention technique, without alignment, is a waste of time and money. It does not matter if you are a peak performance athlete with a near perfect neuromotor system or a child with an early acquired neurologic problem, alignment is a basic body fact and it cannot be ignored. Skill training requires massed, purposeful practice. Practicing out of alignment is practicing imperfect movement patterns, creating maladaptive habits.

“Practice does not make perfect. Perfect Practice makes Perfect.”

Vince Lombardi

Time spent out of alignment is time wasted…worse; it is time spent “wiring in” abnormal movement patterns to the child’s developing brain. Splints and taping are necessary and there are a wide variety of them. How do you know if a particular child can benefit? Take a video of the child sitting and using the hands for some favorite activity. Then have the therapist put on some Kinesiotape and take another video. If the taping is on correctly, there should be an immediate change.

There are frequent courses on Pediatric Kinesiotaping in the USA and its use is growing in other countries. There are many demonstrations on YouTube as well. In my view, the best source of information is Kinesiotaping in Pediatrics by Trish Martin and Audrey Yasukawa. Ordering information for this book is available in the Great Ideas section of this site. If you are happy with your regular therapist and she/he does not know about this useful technique…buy them a copy of this valuable resource. It takes a bit of time to be comfortable with handling the tape, but I have yet to meet a therapist or parent who is unable to master it.

Once you are convinced that the child’s function will be improved by taping, get the appropriate splints. Note that I wrote splints, not splint. There is no one all-purpose item and children need more than one type. Some are relatively rigid and others are more dynamic. The post “How Strong is Your Hand” has some commonly used varieties. If the child is using a TheraTogs System, there are hand supports available as well. The reason you need more than one type of splint is that both the brain and the body rapidly habituate. One rigid splint, used all the time, leads to neglect of the hand, not better use. In contrast, the brain and body both respond to variety. A stronger, more supportive splint can be used during gross motor activities that require a stable joint. Add a little Velcro to it and it can be used to encourage “helper hand” activities and bimanual play. At the other end of a supportive continuum, a less supportive McKie splint, can position the thumb and wrist with the fingers free to be used during feeding or other fine motor activities.

How much should you use splints and braces? How often do you have your child brush their teeth? Parents everywhere understand the relationship between brushing teeth and good oral health. Not brushing leads to cavities and eventual loss of teeth. Not maintaining alignment during growth in a child with CP or BPI leads to distortion and chronic musculosketetal pain. The relationship is just as strong and the consequences of non- compliance are more severe. An adult with bad teeth and gums can get implants or dentures. Adults with badly grown bodies get more surgery and pain. The choices seem obvious to me. As ever, I welcome your comments and questions.

Biomechanical distortion of growing bones and tendons, caused by unequal muscle pull starts early, in the first four years of life. Babies grow to half their adult height within the first four years of life! The majority of this rapid growth is in the first two years. If unequal muscle pull is present, then growth will be affected. It is not rocket science. And the problem progresses…once a joint is out of alignment, the muscle growth is also affected. (see How Strong Is Your Hand?)

In many jurisdictions, children do not receive regular physical therapy until they are three years of age or older. Many are not even referred to a regional cerebral palsy clinic until three to four years of age. Children with a brachial plexus injury are often told to “wait and see”. At the Hospital for Sick Children in Toronto, where I trained in Pediatrics and Neonatology, the babies with BPI are referred early. Unfortunately, after the early evaluation and a visit to teach a home exercise program, the majority of children are only seen at one to three month intervals by a Physical Therapist. Yet subluxation of the shoulder joint has been diagnosed as early as three months of age.

Brachial Plexus Birth Injury: US Screening for Glenohumeral Joint Instability
Pöyhiä, T.H., Lamminen, A.E., Peltonen, J.I., Kirjavainen, M.O., Willamo, P.J., Nietosvaara, Y.: Brachial Plexus Birth Injury: US Screening for Glenohumeral Joint Instability. Radiology 2010; 254:253-260

During the extraordinary rapid growth spurt of the first few years, most children are seen in early intervention programs with a generic diagnosis of “developmental delay” and these programs do not routinely prescribe orthotic devices.

The first three to four years of life are the years that early brain and nerve injuries are recovering. After injury, there is usually a rapid recovery of function in the first six months, a slightly slower gain between six and twelve months and a progressively slower gain through years two and three. By four years post injury, further gains are still possible, but they are slower and require more hard work. This timeline of recovery is consistent across a wide age range and a variety of injuries.

The key difference in adults after an injury is that they have a knowledge of normal movement whereas the baby does not. Babies are not “hard wired” for movement patterns. (see Moving Freely) They develop abnormal movement patterns as they try to move against gravity. If you give central core support and focus on core strengthening exercises during this time period, you can minimize the amount of overflow spasticity and body mal-alignment. (see Billi Cusick’s Thoughts on Managing Children with Diplegic Cerebral Palsy) Another key difference between an aging adult with a stroke and a child with Hemiplegic Cerebral Palsy is that the adult has a normally grown body and muscles that know how to move. I believe that our focus should be much more keenly directed towards optimizing growth and alignment in these most important first three to four years.

One more reason for all of us to work harder to keep them growing straight and moving properly, is that not only will their brain or nerve recover significantly over these first few years, but they will grow new brain. The average child at age three years has only 30% of their adult brain working. The cerebellum, which we now think has over 90% of the adult neurons in it, is still growing and dividing into the basic cell types at age two years. It is not until two to four years that the cells of the cerebellum start migrating and dividing into their specialized adult functions. One of the most obvious cerebellar functions is to control and sequence rapid alternating movements. Here is some good news. All children show some improvement in these skills between the age of four and six when the cerebellum is wired up and starts to work. Since we know more brain is coming down the line, it only makes sense to keep the body in the best shape to be able to use that new function.

The diagram above illustrates a 3 year old and an 18 year old brain with a “hole” in it, representing an injury. You can see that as the baby grows and develops, even if the brain damage stays exactly the same with no recovery, the amount of injury will represent a much smaller proportion of the functioning adult brain mass. The “hole” appears smaller in the second image, but it is a perceptual error. Go ahead and measure it. The injury diagram is exactly the same size.

A second big growth in brain function occurs during puberty. The frontal lobes, often thought of as the seat of our executive functions including motivation, forward planning, and mature cognition, is present from birth, but it seems to “turn on” and become active as children go through puberty. Girls tend to go through puberty about two years earlier than boys and they get access to these higher brain functions earlier as well. Roughly 40% of our cognitive function comes online through puberty.

In summary, baby brains and nerves have the potential to recover significantly over the first years of life. As their brains continue to mature, new functional capabilities come “on-line” and allow further compensation for the original injury. THE major problem that all these children face is inadequately treated body mal-alignment. The problem starts early and we should be helping them earlier. Core support, splints and orthotics are not optional items. In my opinion, these useful technologies should be started as soon as you realize there is a problem. In brain injury, start with the core. In BPI, support the shoulder joint and arm. This is the most important point…these supports will be used until the muscle pull is balanced and the child is fully grown. The results of not keeping the body in alignment are well known. Long-term follow up studies document that chronic musculoskeletal pain occurs in more than 60% of surviving adults and they self-describe this pain as their most significant problem. This result is not “good enough”. Parents need to get active…talk to your doctors and therapists and get straightening!

See Also
Movement Starts with the Core
Minimize Maladaptive Motor Habits
Is Malalignment Malpractice?
A Journey of Recovery by Vanda Roseboom

Children with cerebral palsy affecting the upper limb or a brachial plexus injury develop a flexed wrist when the muscle “pull” is unbalanced. In cerebral palsy, the flexor muscles tend to be more active and they pull the wrist down in the flexed position. Over time, they gradually tighten and shorten. This change in the muscles helps perpetuate the problem. The muscles that normally extend the wrist, or lift the hand up become longer than normal and this change in length also makes them weaker.

In brachial plexus injury, damage to the nerves of the wrist extensors helps initiate this problem. There is a variable innervation of the muscles of the forearm, but wrist extension is usually from C6 and C7. If the wrist extensors are weak, the wrist flops downwards. The position makes the grasp weaker, but it also contributes to shortening of the flexors and further weakening of the extensors.

Body growth is damaged by unequal muscle pull and this imbalance makes the original problem worse. So, whatever the original neural insult is, either excessive tone in the wrist flexors from cerebral palsy or excessive wrist extension weakness in brachial plexus injury, the end result is a biomechanical distortion that weakens grip strength. Whichever the cause, a splint or taping to support the wrist in a slightly extended position will give gains of 30 to 40% more in strength just by adjusting the alignment. It is a simple quick fix!

In my opinion, there is absolutely no point trying to improve the grasp and function of a hand without paying attention to the wrist first. If a muscle imbalance has been present for a long time, in addition to daytime splinting and/or taping, the child may well need a night splint. The reason for the night splint is to hold the hand in a slightly extended position over a prolonged period of time to help shorten the elongated wrist extensor muscles.

Over the past few weeks I have had an extraordinarily frustrating time as people have asked me to recommend products for them to use to control wrist function. I have gathered a few that are listed below. I would very much appreciate hearing from the physical and occupational therapists out there if there are other products that they recommend. For any individual child, it’s important that you take this information to your treating therapist and make sure that what you think might work is actually appropriate for your child.

Benik
www.benik.com

McKie Splints
www.mckiesplints.com

DMO (Dynamic Movement Orthoses)
www.bostonbrace.com/content/dynamic_movement_orthoses.asp

Cascade Orthotics
www.cascadeorthotics.com

For night splinting, a friendly therapist brought this one to my attention.
http://www.rehabmart.com/product/comfyprene-infant-hand-orthosis-by-comfy-splints-33036.html

For hand compression and awareness
http://www.amazon.com/Glove-Right-Hand-Child-Black/dp/B00B6ESCMM/ref=sr_1_3?s=hpc&ie=UTF8&qid=1360322574&sr=1-3&keywords=Children

This one is too big for a child’s hand. Is there a pediatric version of this idea out there? Please let me know.
https://www.ncmedical.com/item_1085.html

TheraTogs can, in most cases, prevent and in many more cases, treat biomechanical distortions caused by unequal muscle pull. If the child has a weak core, I believe they should be in a Tog for much of the day until the therapeutic exercises, in the Tog, have strengthened it.

Spio has a full range of compressive garments. These garments give excellent proprioceptive feedback to the child and this is their major benefit. They provide support and can, to a degree, improve alignment. I have been very impressed with the results in children with hypotonia or low tone. The effect of improved proprioception is almost immediate when you put them on. Parents recognize quickly that the child is steadier. As I explained last week, in my practice, I recommend both of these techniques, with the recognition that children with more than mild problems are going to need both systems to optimize function.

Kinesiotape is another good technique that all therapists should have in their toolbox. It is useful in babies to peak performance athletes… watch Wimbledon in June and see how many tennis players have bright blue tape on their bodies. Many more athletes use it, but it tends to be hidden under their uniforms. This tape provides excellent proprioceptive feedback and is useful in providing a small degree of support to a joint. Time for another fact check. You cannot Kinesiotape an entire trunk and pelvis to provide the required support for weak muscles. In most children, trunk support is needed over a very prolonged period of time and the skin will not tolerate it. However, this tape can be used in addition to either of the more supportive core garments and it really excels as a therapeutic adjunct when working on a specific upper or lower limb motor skill.

The problem seems to be recognizing that until the child has some core strength you cannot increase core strength. Every muscle has its own optimum length and strengthening occurs when the muscle is working within its optimum range. Once you have midrange strength, you can work on strengthening in a shortened position and even strengthening in a lengthened position, but you cannot, in my experience, strengthen in a lengthened position first. A child or an adult with a weak core who cannot maintain an upright sitting or standing position, will need some support in order to exercise properly.

Unfortunately, when the core is really weak, it is not just the muscles that are affected. If you think of the child in a “C” shape, all the muscles and tendons at the back of the body are elongated and weak while all the muscles and tendons in the front of the body are shortened and weak. Compressive garments and taping all work to keep the muscles in their normal range.

What about the older teenagers and adults? The major difference here is that these individuals may have suffered the results of muscle imbalance in a growing body. Most of the adults were discharged from active therapeutic interventions before many of these modern techniques were made available. Many, if not most, have significant body issues with shortened muscles and tendons as well as bony alignment issues.

The first step for these individuals is an examination by an adult physical therapist. There is not much point in looking for a pediatric therapist as in most cases, they work in institutions with a finite age limit of 18 or 21 years and frankly, do not have the type of examination equipment that may be needed. I have found the best results with an orthopedic or sports therapist. They understand biomechanics and should be able to provide you a good documentation of muscle strength and range of motion. Before starting any program of therapeutic exercise, you should see a physician to rule out any contraindications or limitations to your exercise program. For those who are in the mild to moderately affected group of adults, a family physician could do this clearance. For those with moderate to severe involvement, I would ask for a referral to see a physiatrist. These individuals are like an internal medicine specialist for people with neuromotor impairments. The American Academy of Physical Medicine and Rehabilitation at www.aapm.org has a useful tool to find a physiatrist in your region. You can find the tool under the family and patient tag on their homepage.

For teens and adults that are up and moving, you might try a sports compressive garment to see the effect of some support. The following links are for two types of sports garments. The first is more supportive, as it was originally designed to help support joints in peak performance athletes. The second is more equivalent to what I have described under the Spio information. There are many other types available and I encourage you to send me information of any you find that are helpful.

http://cw-x.com/default.aspx

http://www.cepcompression.com 

All of them give improved proprioceptive awareness, support circulation and some degree of support.

What exercise systems are there in addition to therapy? For the older child, teenager, or adult, Pilates exercise is a good choice. This system was developed with the aim of increasing spinal and pelvic stability. There are practitioners worldwide and a fair number of adult therapy centers have Pilates available as well. In that type of therapy center, you have the best of both worlds in that the Pilates instructor is also a physical therapist. There are a smaller number of pediatric physical therapists who have incorporated Pilates into their programs, but it is always worth asking your own local contacts to see what else might be available.

Yoga floor exercises are also very helpful. Both yoga and Pilates practitioners put a lot of emphasis on improved breath control… a common problem in all adults with limited mobility.

Tai Chi is a martial art form that is also very helpful. Tai Chi centers often have modified programs for adults with injuries or impaired mobility due to age. These programs may offer a series of seated exercises to start. For most people with spasticity, there is less “overflow” to the muscles in a seated position than in a standing position.

All three of these techniques are “out of gravity” to some extent. The movement patterns that you learn are new to your body and challenging to your brain. There are many research studies that now have documented that novel, challenging tasks induce neuroplastic change. As readers of this site understand, many of the movements that affect individuals with an early neurologic injury become ingrained habits. Coaches and athletes will tell you that you cannot change a habit by working a habit. Activities that are out of gravity, on the floor, are particularly beneficial.

Water exercise with a flotation device is an excellent method that improves cardiovascular fitness, allows out of habit practice of reciprocal movements, and strengthens both the limbs and the core. If you are registered on this site, you can download a water program here that is effective for both children and adults who are able to get in and out of the pool.

Remember, the older you are, the more important it is to check with your physician before starting this or any other exercise program.

Of all of these exercise methods, I have seen the biggest gains from water. In a flotation device, in the water, your brain has to rapidly figure out how to move in a totally new environment. Firmly wired patterns of movement on land do not work. It is sometimes shocking to see how much improvement is possible in the water when you take away the habit that is hiding the evidence of neurologic recovery.

There are a series of blog posts about water exercise that document change in both children and adults. This link will take you to a page with all of these blogs. Water Exercise posts.

What else has changed in the last 20 years? There are new and improved methods of spasticity management. Orthopedic surgery has entered an entirely new era with improved selection criteria, intra-operative techniques, and better post surgical rehabilitation. These interventions are not within the scope of this site, but I do think it is worth talking to a physiatrist about your individual case. I believe it is always worth making an informed decision.

For the parents of young children, I encourage you to create a dialogue with adults who have had a similar early brain or nerve injury. I think it is important that you understand the natural history of nonintervention. You are in the position to limit the effects of body malalignment issues in your child. It is a lot of work, but I encourage you to remember that it is easier to prevent a habit than to change a habit.

For the adults who read this blog, the first change for many of you, will be the willingness to investigate the possibility of change. In my experience, most of the adults that I have met, have initially resisted the possibility of change. This is not surprising. You grew up and were treated in an era when human neuroplasticity was denied. It is now an accepted scientific fact that our brains can change and improve throughout life. Equally, dealing with body malalignment issues is a much more advanced science. The first step is the willingness to change.

In closing, my message to parents, adults and therapists is simple. Alignment issues are virtually universal in all people with early neurological issues. Dealing with them is a challenge until the teenager has reached bone maturity at 18+ years of age. Collectively, we have to stop thinking of all the available therapeutic interventions as interchangeable options. We have to support alignment first and foremost. If your practitioner does not have these “tools in their toolbox”, then get a referral to see someone who does have these necessary skills. In my opinion, the alignment supports that each child needs are as necessary for them as insulin is for a diabetic. Next week, I will discuss alignment issues in hands, another almost universally neglected area of alignment management.

See Also
Minimize Maladaptive Motor Habits
Movement Starts with the Core

The stark reality is that the quality of movement that our current therapeutic interventions are producing is not “good enough” for the majority of children. Many attain function without alignment and that means pain later in life. (see: Is Malalignment Malpractice? and Poor Alignment Equals Chronic Pain) Next time you are at a doctor’s office or at your regular therapy center, look at the older children.

In the beginning, I was taught that cerebral palsy was caused by a permanent, irreversible brain injury. In the presence of a permanent brain problem, functional independence seemed to be a reasonable goal. Working under this paradigm, we have collectively settled for distortions of the body’s alignment in children with cerebral palsy. Then along came Human Neuroplasticity…a true game changer. As I got older, and my patients got older, I found more and more evidence that they were capable of complex motor movements. (The Boy Who Could Run Better Than He Could Walk) Once I worked out the difference between neurologic potential and early learned habit, I had to question the ethics of setting such low outcome parameters for children who would have demonstrable recovery later in their lives. (Recovery In Cerebral Palsy Takes Time and Fresh Thinking)

It is common wisdom that it is easier to prevent a habit than to change a habit. Older children, teenagers, and even adults can change these early maladaptive habits, but it takes a lot of work and a lot of interventions and a lot of time. So, the goal is not to walk early, but it is to walk well. I would like you to stop and look at this YouTube video. http://www.youtube.com/watch?v=uUgtzfvXr9g

It was filmed with an annoying radio commercial in the background, so turn down the sound. As you watch it, notice that at first he falls frequently and is not using his hands. He requires close supervision. Then he is filmed with a TheraTogs system in place. With the suit on, he is able to walk rapidly with better balance. He no longer falls, he gets farther away from supervision, and he is actually able to hold a toy and walk at the same time. You decide which gait you think the child should practice…the one with the TheraTogs system or the one on his own?

When a child has the base of a stable trunk, they are able to activate and strengthen the core muscles. It is hard for anyone to properly strengthen a muscle if it is either too short or too long. When children slump into a “C” shape, the muscles on the back are stretched and elongated and the muscles on the front, particularly the hip flexors, are shortened and weak. The reason professional athletes have strength training coaches and weekend warriors have personal trainers is to make sure that the body is in the correct position when the muscles are strengthened. It may be harsh to say it, but I think anyone who believes that they can be successful strengthening a baby’s muscles in an abnormal position is working in an alternate reality system.

I posted Billi Cusick’s letter to parents and therapists about postural control and its development. Please read it. The link is at the end of this post. She developed the TheraTogs system and is owner of the company that distributes it. This means that she can’t be quite as forceful as I can be about encouraging its use. I am in the fortunate position of having no competing biases. I am not a consultant to Billi’s companies nor do I profit from the sale of her equipment. The same disclaimer holds true for any other technique or technology that I recommend. All I can do is give you my views based on over 35 years of dealing with children with early neurologic injury. I have now retired from clinical medicine and my “work” is writing.

You can read more about the TheraTogs system at www.theratogs.com

Billi Cusick’s teaching schedule, books, videos, and research results are available at www.gaitways.com

I also think it is worthwhile to Google the images for TheraTogs and look through them. It is obvious that all these children have achieved proximal stability for distal mobility in their suits. With a stabilized trunk/core, they are in a good position to learn to use their hands or feet.

What else is available? Athletes use variable levels of support depending upon the amount of stress that is being put on their body. I believe that children should also have variable levels of support available for their bodies. This opinion is in direct contrast to common practice in pediatric neurorehabilitation where most children are offered only one level of support. I have seen countless children with one set of ankle foot orthoses and nothing else. They go from the AFO to bare feet or flip-flops. Most do not even wear supportive shoes. I would hazard that 90% of the children I have seen with abnormal wrist/hand positioning either have no support for the joint or they do not use the supports. My goal for children with mild or moderate injury is a straight body that moves well by their late teen years. I do not accept the concept of allowing their bodies to deform and their brains to learn abnormal movement patterns.

TheraTogs, like AFO’s, are rarely worn throughout the waking hours. Fortunately, variable support is available. The Spio group of products are similar in many senses to the compressive garments used by athletes. You can see these products at www.spioworks.com

There are a group of in-course videos to see at www.youtube.com/watch?v=bGIJ9VmuC2w

I personally have had less experience with the Spio products than the TheraTogs. However, they are obviously effective with low tone and much easier to use with infants and young toddlers. I think they could also be used effectively as a “step-down” from the TheraTogs in older children. I guess the simple answer is that you should use the equipment that allows your child to have a steady core. From that position, the child can do all the therapeutic exercises and various techniques that are available to strengthen the core muscles in their proper alignment. Putting on a compressive garment does not put a muscle at rest and cause disuse muscle atrophy. It actually improves the activation of the muscle by improving the sensory or proprioceptive feedback to the brain of the body’s position in space. This is one of the reasons athletes use compressive garments! We should stop expecting children with damaged brains to be able to do things that peak performance athletes, with perfect brains and excellent neuromotor skills, cannot do.

These two techniques are the ones I am familiar with and feel comfortable recommending. Others may also work. As ever, I appreciate feedback. For any techniques the most important principle is that the trunk muscles are in the proper alignment. Exercise out of alignment is harmful, not helpful. If your child “works” better with your therapist’s hands on for support and guidance, then you should consider sending a set of hands home with the right compression garment.

I close this post as I started…the core is the starting point for all movement. The list of other techniques and technologies used in the small child with Cerebral Palsy is fairly long and many of them discount the core…some even go so far as to push parents to only use their particular program. Everyone is entitled to their own beliefs, but it helps if the belief is based on a few important realities. All movement starts with the core. Look again at the first YouTube video http://www.youtube.com/watch?v=uUgtzfvXr9g

With an unstable core, the child learns a maladaptive movement pattern. With a TheraTogs system, properly fitted, his gait is great. Your choice.

My parting words are “Properly Fitted”. There are a lot of trained, certified TheraTogs therapists. On the two sites given above, there is a wealth of helpful information for people who are not as experienced. The Spio website also has information about their product, research reports and some helpful information on fitting the garments. My advice to parents and therapists is to contact these sites directly for information about trained practitioners in their area. Adults should contact both sites for information about larger sized products.

My next post will be about exercises for the core in older children, teenagers and adults.

See Also
Movement Starts with the Core
Billi Cusick’s Thoughts on Managing Children with Diplegic Cerebral Palsy

Having examined literally thousands of babies with documented brain injury in the NICU and in the Neonatal Follow-up clinic at the Hospital for Sick Children in Toronto, I can confidently state that the first presenting abnormal neurologic sign, in the majority of babies, is low tone, muscle weakness. This persists into infancy. The babies develop neck control late and often arch their head backwards. However, if the trunk is well supported by parent or therapist, the abnormal arching decreases. The developmental sequence of normal and abnormal movement patterns is brilliantly documented in the new version of Lois Bly’s classic book.

“Components of Typical and Atypical Motor Development”

I strongly advise all parents of young children with neurologic problems and the therapists that treat them to purchase this book and study it. It shows you the normal patterns that you are trying to achieve and allows you to recognize the abnormal patterns as they develop.

In the bad old days before we realized that baby brains can recover, the goal was to teach the child compensatory strategies… ways to inhibit abnormal movements… with the ultimate goal of functional independence. Normal movement patterns were often sacrificed for functional gains. To this date, many children with mild impairments are discharged from therapy as “good enough”. They are functionally independent, even though they walk with a limp and may have only one hand that works normally. To the gatekeepers of therapy services, they have reached the goal of independent walking or writing. In my view “Good Enough is not Enough”. If full recovery is not expected, it can never be achieved.

I believe that the 2013 goal should now be normal or better function for all these children with mild to moderate injury. For those with a more severe injury, the bar also has to be set much higher than it has been in the past. In my medical training, I was taught that you could confidently predict the outcome of a child with cerebral palsy by the age of 3 to 4 years. I now understand that accepting a lifetime prognosis at this early age was completely wrong. Neuroplasticity is possible even in old deteriorating brains. Surely our young deserve a better outcome than “good enough”.

Here is the problem. NDT therapy and every other early intervention therapy teaches parents ways to inhibit abnormal movements and the good ones teach techniques to strengthen the core muscles. A terrific idea in the abstract, but rarely achieved in real life. Parents cannot support a child’s developing trunk muscles during all the waking hours and therapists are only available for 1-3 hours a week.

Core muscle strength is a prerequisite for the postural control and balance that underlies all movement skills. I think it is useful to examine the importance of the core in Athletics. When I was young tennis player, my pro encouraged strength training and cardiovascular fitness off the court, but no direct exercises for the core. Sports related injuries were a big problem, largely caused by unbalanced muscle pull and a comparatively weak trunk. Over the last 20 years or so people have gradually realized the importance of these basic stabilizing muscles. This is an easy to read abstract.

The Role of Core Stability in Athletic Function

Obviously a baby cannot do the exercises to increase core muscles that are used by athletes. However, the underlying principle of “proximal stability for distal mobility” is it universal rule of movement.

A strong core is also of great significance in the aging adult. This is a good summary that also provides you information of specific exercises for the muscles involved in developing core strength.

Core Strength Exercises Will Impact Your Overall Health

If you read through this link, you will understand that strengthening these muscles is a complicated process. Learning to control and sequence the action of all these different types of muscle is hard for the baby and this difficulty explains why it takes the baby a good 6 to 9 months, in the normal situation, to sit steadily and start to consider other movement options.

How do you assess core weakness? Clinically it is dead easy. You put the baby or child into a sitting position, providing pelvic support. Look at their back. If it curves down in a “C”, they have trunk weakness. When I ran the Magee Clinic, I realized that we needed an objective measure of change in core weakness. Anne White, an occupational therapist and I developed a method to easily assess the degree of core weakness in children with various neurologic disorders. The Slump Test was published in the American Journal of Occupational Therapy 20 years ago.

White,MA, Pape KE: The Slump Test. Am J Occup Ther. 1992 Mar;46(3):271-4

Although this test has been fairly widely used as an objective measurement of change in research programs, it has not been used widely in clinical practice. I believe strongly in the value of measurement, both to document change and to diagnose early the problem of “no change”. The almost uniform reluctance by therapists to measure the degree of trunk weakness may be interpreted several ways. Some surely think it is a waste of time. But there is another more difficult explanation, that some do not want to document lack of progress. After all, many of the insurance reimbursement policies are based on documenting positive change. When we measured change in trunk strength routinely, we found that many of the time honored techniques to strengthen the trunk actually had little, if any, measurable effect. More on the fear of “No Change” later.

The assessment that is used for the majority of children is a subjective clinical assessment. The infant is held as described above and the therapist or physician judges how “slumped” the child is on that day. No record is kept for future comparison. The older child is examined for sitting balance on a bench. The therapist looks for compensatory movements such as tightening of the hands or legs. I also like to look at the child’s hand use while lying on the back or in side lying versus hand use in the sitting position. A record may be kept, but it is subjective. In my experience, photographs and/or measurements are rarely done.

For parents, if the child demonstrates fisting in the sitting position, check again with the child in supported sitting, between your legs, leaning back on you. In older children, look at what happens to the hand when they are up and moving. A child with a mild hemiplegia may demonstrate relatively good hand function in supported sitting, but has a fisted hand and retracted arm when running.

In all cases, the improved function with support demonstrates that there has been some degree of brain recovery. Poor balance and postural control is the underlying problem that creates the increased in tone and deteriorating function in less supported positions.

Recently I was speaking to a young father about the concept of Habit Hides Recovery. He obviously understood the concept because he asked me about a specific therapy technique that they were trying with their daughter. During the therapy sessions, his daughter frequently retracted her affected arm and fisted her hand. He was worried that this was creating a maladaptive habit. He was Right! Each and every time the child increases tone, the body learns how to do “increased tone” better. Mrs. Bobath, cofounder of the NDT program, was one of the first understand that you have to stop the child going into abnormal movement patterns. In her day, therapists were limited to hands-on techniques. Here is a wake-up call. We are in the 21st century. There are methods to support the trunk of the infant and toddler that serve the same function as the therapist guiding hands.

This is the “Catch 22” of developmental plasticity. For those who are too young to have read the terrific book of the same title by Joseph Heller, a Catch-22 is “a paradoxical situation in which an individual cannot or is incapable of avoiding a problem because of contradictory constraints or rules”. (Random House Dictionary (Random House), 2012)

You cannot adequately strengthen trunk or core muscles until the baby has had some brain recovery, which takes time. During the period of brain recovery, all the NDT based exercises are great and parents of young babies should learn them and integrate them into daily use. Here’s the catch… Who has the time or ability to keep their hands supporting the baby’s trunk throughout the waking hours? Depending solely on positioning and therapeutic exercise to improve your child’s trunk control is a set up for failure.

For the older child, even when they have enough brain recovery and developmental maturity to take part in active strengthening exercises, they still have problems for all the other hours of the day when they are not in active therapy. Even if they are able to maintain a good trunk when fresh at the start of the day, they will slump as they fatigue. Until the core muscles are strong and functioning in a coordinated fashion, all the waking hours, the child will revert into abnormal postural control and fall into maladaptive body habits.

The bad news is that in any situation of muscle weakness working against gravity, Habit Always Wins. The good news is that there are ways to support the child’s trunk while teaching them more normal movement patterns. For the older child, there are some exercises that will work better than others in the presence of established abnormal habits. A small “best possible step” that you can take right now, is to evaluate your child or your patient for residual trunk weakness and poor postural control in both sitting and standing. For adult readers of this blog with cerebral palsy, you have the advantage of being able to assess for yourself when your body tightens up. I suggest you assess this from the perspective of poor trunk control as described above. The simplest test is to sit unsupported and assess your hand function compared to sitting with good support. Assess your leg tone standing versus leg movements while lying on your back on the floor or bed. In many cases you’ll find better movement range and function when the trunk is supported.

If you do the assessments as I have outlined above, over 90% of affected children and adults will demonstrate evidence of significant trunk weakness. Do not despair. The first step to solving a problem is to recognize that a problem exists. The next post will focus on the types of exercises that can be used to strengthen the core “out of gravity” and the compressive garments that can provide needed trunk support during daily activities and therapeutic exercise sessions.

“Each of us guards a gate of change that can be opened only from the inside.”
Stephen R. Covey

How do you change?

Nike has it right…Just Do It. Make a choice to do the best you can do at any particular moment in time. This is my only resolution for this year. Out with the 5 year plan and in with the simple question…is this the best I can do at this moment in time? Little choices that we make hundreds of times each day add up to monumental changes over time.

Strangely, it often seems easier to do something that we know is not the best available choice. Earlier today, at a bookstore, I saw a display of 20 or more new diet books. Each one offered the newest, best solution to the problem of the fattening of America. We, the public, seem to have an insatiable appetite for more diet books…yet the majority of us continue to gain a few more pounds a year. Why?

The answer is simple. We have eating and exercise habits that have been wired into our brains. We like the foods we like and we like eating them. The reason there are so many diet books is because it is hard to change a habit and we just keep hoping that this book, this diet, will be the one to make the difference that lasts.

How do you change a Habit? You have to make a new one. That is the essence of the Nike slogan – Just Do It. We all know how to lose weight and gain fitness. Eat less and move more. Next time you eat, ask yourself if you are making the best food choice you can at that moment. Increasing our activity levels is the same process. Stop the elevator 1 or 2 floors below your destination. Park the car 2 or 3 rows over from the mall entrance. Simple little baby steps make a world of difference AND with repetition they make new habits.

Cognitive neuroscientists have demonstrated that habits are replaced, not broken. If you are trying to lose weight, thinking about not eating is just as powerful an activator of your brain map for yummy food as actually anticipating the treat. I think the reason the small steps everyday program works is because you gradually build up an alternate facilitated brain network or map that eventually lights up first when you are hungry. The old habit is seamlessly replaced. The same process also seems to take place in those who take up exercise on a regular basis. It is hard to get going, but once a new habit of movement is established, it is often almost impossible to even remember what the old life was like.

What about therapy for children with early neurological issues? All the parents of these children face an incredible burden…how to find the knowledge and time to do the best possible for their child. Unfortunately, many apply the same process to this task as we all do for diet and fitness. An enormous amount of time and money is spent looking for the therapy or the technology that will make the difference.

Here is a sobering fact. There is no therapy that I am aware of that will fix your child’s problems. Many things help, but there is no magic elixir. As I hope to explain in future posts, the key is to do the Right Thing, at the Right Time and most importantly, in the Right Order.

If I had to pick the one best thing to do, it would be to keep the body in best possible alignment every day! You may not be able to do every exercise every day, but if you can put on your child’s shoes, you can take the time to put on his braces and/or splints. Wearing the prescribed orthotics is the simplest thing you can do that affects your child’s body all day long. An extra 5-10 minutes of gearing up gives your child 8-10 hours of therapy. The consequences of letting the body grow abnormally is pain and increasing disability. Your choice.

What if the orthotics cause problems…too tight….pressure point…the list of reasons not to use them can be endless. Make a small choice to get the problems fixed. Parking the gear in the back of the closet does not make the biomechanics problems of growth go away. The problems just get worse and in many cases lead to surgery. I do not believe all surgery for children with CP can be avoided, but the extent and frequency of it can be affected by good orthotic use.

What is the right type of support? Your physicians and therapists are your best resource. However, you, the parent, have the most vested interest in working through any and all problems to get the best possible answer for your child. There are some pretty basic principles to follow and over the next few weeks, I will write about my clinical approach.

See Also
The Good, The Bad and The Ugly Facts About Growth and Recovery

The Good, The Bad and The Ugly Facts about Adult CP

An Open Letter to Caretakers and Therapists for Children with Diplegic CP

I’ve seen hundreds of families of children with diplegia, in consultation sessions in which I routinely undertake an orthopedic assessment and evaluate postural control, movement strategies, and existing orthoses. Common denominators have emerged that appear to operate to contribute to common problems of contracture development and recurrence, and to diminishing movement skills so often seen with advancing age in children with diplegia.

I’ve composed the attached letter for caretakers and therapists of children with diplegia to bring them together in their understanding of the sources of many common musculoskeletal problems, and of the fundamental skills and strategies that are needed for effective remediation.

Pacesetter readers are welcome to share this letter with their colleagues, clients, and prescribing physicians.

See also
www.theratogs.com
www.progressivegaitways.com
The Good, the Bad & the Ugly Facts About Growth and Recovery
Is Malalignment Malpractice?
Poor Alignment Equals Chronic Pain

Malcolm Gladwell, in his book “The Outliers” studied highly successful people and discovered some of the important truths about success. (Outliers by Malcom Gladwell) He found that the “surround” or community of the successful Outlier was an important component. If you apply this concept to the community of people surrounding a child with an early acquired neurologic injury, it is obvious that it is terribly important to make sure everybody understands the emerging concepts of neuroplasticity and habit. People who cling to the past and think that brains cannot recover, or that brains only recover in the first four years of enhanced neuroplasticity, limit their expectations and the outcome of children is affected. Equally, if we do not distinguish between early learned habit and recovered brain potential, it is the child who will suffer. The boy who could run better than he could walk has a recovered nervous system. His corticospinal system is up and running very well. His persistent abnormal walk is an early acquired habit which probably will not change significantly until he is a teenager.

It takes that long for the child’s brain to mature. The frontal lobes, the center of executive action and motivation, activate as the child goes through puberty. This is one of the reasons that girls tend to do somewhat better in the early high school years, as on average girls go through puberty several years earlier than boys. It also explains why the late developing boy, who may not hit puberty until 16 or 17 years of age, may have more of an academic struggle in the early years. There is no way to rush brain maturity and it is time to recognize that there is a wide variation in development age linked to sexual maturation.

Medicine focuses on problems, not successes. As a consequence, there are lots and lots of papers that describe the progression of early acquired secondary musculoskeletal complications, a.k.a. habits, as the child grows older. Children with Brachial Plexus Injury have a high incidence of shoulder pain and decreased mobility as they age. The published literature says that children with cerebral palsy will lose function as they grow older. Gains in height and weight and progression of contracture and bony distortion make walking harder and harder. By the early teen years, when they enter a larger high school with long hallways, a mobility device is often recommended. There is nothing wrong with these young people using a wheelchair or a scooter for mobility. There is absolutely no point in them exhausting themselves walking. But, this is where the important issue of mindset comes into play. If moving to a wheelchair is considered part of a natural downhill progression, then that is all that happens. They use a chair and their function decreases faster. If moving to a wheelchair is considered just a convenience to manage long-distance requirements, then this action will be paired with an increased exercise program to compensate and maintain at least the same level of function. All you able-bodied people out there…ask yourself this question. “What would happen to your overall level of fitness and endurance if you stopped walking?”

This site is filled with stories of outliers and what they have taught me over the last 30+ years of diagnosing and dealing with the effects of early acquired neurologic injury. I would like more examples and urge any therapist or physician reading this site to send me a note about their best outliers. (Contact) I want to hear about the children who did far better than you had predicted. For the parents and adult survivors of CP or brachial plexus injury, send me your stories. Some of them I would be happy to post on this site. My goals in this are twofold. First is my interest in trying to understand the underpinnings of success in some. The more important goal is to give hope, with real examples, to the young families who are trying to understand their child’s future.

So what do I want to hear from families?

• Were you ever told that your child will not walk? Let me know if they walk now and what else they’re able to do that exceeds that early prognosis.
• What were you told about ultimate arm function after a BPI injury? How did you beat the odds and improve on that prognosis?
• Tell me about the higher order motor skills that your child does in spite of an early acquired habit. Children who run better than they walk or can do jumping jacks but not volitionally lift their arm over their head.

Kids with leg involvement that skate or rollerblade or ski. I want to hear about teens that dance, perform on stage, are on a sports team, show a horse… The list of possibilities is almost endless, yet very few people in the general public ever realize just how accomplished the young people and adults with varying degrees of neurologic disability really are. We need to get the Outliers out front to raise the general societal expectations for everyone.

See Also

A New Way of Thinking About Recovery – Neuroplasticity Exists
The Boy Who Could Run Better Than he Could Walk
A Journey of Recovery by Vanda Roseboom
Cerebral Palsy
Brachial Plexus Injury
What is the Diagnosis?
Change Your Expectation, Change Your Outcome

The bad news is that adults with cerebral palsy have had a lifetime to firmly wire in their abnormal habits. Each individual is a unique person made up of their early experiences and this identity for the adult with CP includes all their abnormal movement and speech habits. Further, since all learning is experiential, they have not experienced normal movements and most find it hard to even imagine moving differently. (See, Moving Freely and Independence for My Daughter)

The ugly news is that there is no organized way for adults with cerebral palsy to access and benefit from the techniques and therapies that are now available. Most pediatric hospitals and clinics have firm age guidelines that discharge affected individuals at age 18 or at most, 21 years. There are few if any adult physicians or surgeons who are willing to provide care for these individuals. And prior to President Obama’s health care plan, all would have been denied insurance coverage to pay for any such treatment or technology on the basis of pre-existing conditions. His new program has rewritten this part of the insurance companies’ practice. Soon there will be affordable healthcare for everyone who needs it and there will no longer be a “pre-existing condition” exclusion.

It is very hard to write this blog because I recognize the challenges facing adults with CP. At first glance it seems overwhelming. I recently gave a talk at The CP Group (www.thecpgroup.org) in Washington DC. It was an interesting group of adults with various forms of cerebral palsy. I would estimate that half of the individuals were in wheelchairs. Since that time, I have been really thinking about where to start when there are so many problems to be addressed. I came down to two starting points that I think would apply to most people. The first is motivation to change and the second is pain management.

How motivated are you to change? I picked up “The Wisdom and Teachings of Stephen R. Covey” yesterday. I collect quotes and this book was made for me. It is a memorial to him that contains some of his best sayings. (Buy on Amazon) Under the principle of choice, I came across this one.

“Each of us guards a gate of change that can be opened only from the inside.”

The first step to change is deciding that you are motivated to change. No one on the outside can do it for you. Change is difficult for many people. Staying where they are is less frightening than opening the “gate of change”. Even if they are not happy where they are, they have difficulty seeing themselves in a different reality. When I work with adults, this first step is often the hardest.

There are two techniques that I have learned that seem to help this process. The first is searching out some ”Change” role models. This site is a good starting point. Click here to scroll through and look at videos of change. Watch my TEDx talk to learn more about how brains recover. Search cerebral palsy on www.ted.com and you will find interesting talks by neuroscientists like Michael Merzenich and the debut of the British Paraorchestra.

Another excellent video to watch is an introduction to the actors of Actors Without Boundaries at http://www.youtube.com/watch?v=FfXGQK9vbpE. This organization was started by Christine Rouse, my best example of a change artist.

You could easily spend hours watching TED and TEDx videos that bring you new ideas and evidence of change. Just as children cannot understand the concept of moving freely until they are given a situation where they can move freely, it is hard to think about change unless you can imagine it. (Moving Freely)

The second technique is picking something to change that can show results…measurable change…in a relatively short time. Success is the greatest motivator. Musculosketal pain is one of the most common problems reported by adults with CP and it is generally under treated. (The Good, Bad & Ugly Facts about Growth & Recovery) It is hard to do any type of exercise program if you are hurting.

If you have pain, recognize that this is one of the secondary complications of CP. It can and should be treated. The first point is to figure out what hurts and when. Children often do not complain of pain until it is excruciating. The “regular” aches and pains that they experience daily are normal to them. As an adult, you have the advantage. Make a list of your pains. Start at the top with headaches and move down your body. Try to figure out the intensity of your pain for each site. Are there things that make it better and things that make it worse? Put it all down and then make an appointment with your doctor.

Now this is the important point. Pick one type of pain, e.g. headache or muscle spasms or sore hip that you want to deal with first. Doctors are not magicians and they work best when they have a clear question to work on. There are two great books you might want to read. “How Doctors Think” by Jerome Groopman and “The Empowered Patient” by Elizabeth Cohen (www.elizabethcohen.com). Both these authors give valuable tips and techniques to get the most out of your encounters with the healthcare world.

In many situations of multiple, chronic pain sites, a referral to a pain clinic can be very helpful. You are more likely to make it to a pain management clinic if you do a bit of work on your computer to find out what is available near where you live. Doctors and therapists in these clinics like to solve problems and they know more about pain than the majority of doctors and surgeons. So if your case is complex, go to the experts.

Next week, I will write about some of the things to consider about getting ready for exercise and some of the types of exercise and physical therapies that are available. The first goal will be to decrease fatigue and improve endurance. Register on this site or subscribe to the RSS feed to be sure to receive notification of new posts.

From the Centers for Disease Control and Prevention, “Cerebral palsy cannot be cured.”

From the American Academy for Cerebral Palsy and Developmental Medicine, “Although cerebral palsy is not “curable” in the accepted sense, training and therapy can help improve function.”

From the National Institute of Neurological Disorders and Stroke, “Cerebral palsy cannot be cured, but treatment will often improve a child’s capabilities.”

Under the description of research in CP is this goal. “To make sure children are getting the right kinds of therapies, studies are… being done that evaluate both experimental treatments and treatments already in use so that physicians and parents have valid information to help them choose the best therapy.

Contrast the tone in this statement from the same NIH institute regarding stroke research. “Scientists are working to develop new and better ways to help the brain repair itself to restore important functions. New advances in imaging and rehabilitation have shown that the brain can compensate for function lost as a result of stroke.”

Big difference!

I travelled to Australia last May to give a talk at the inaugural meeting of the International Society for Restorative Neurology. The majority of speakers worked with adults with spinal cord injury (SCI). I was the token pediatrician. I was impressed by the speakers and the attendees from around the world. They had cure as their goal. I also attended a research update hosted by the Research Foundation of the Cerebral Palsy Alliance of Australia in Sydney. Their Mission: To prevent and cure cerebral palsy. Their Vision: A future without cerebral palsy. I was taken by one key statement in their Strategic Plan 2010-2013. “New evidence of the brain’s plasticity has generated growing excitement amongst the cerebral palsy research community. This has the potential for the answers about cerebral palsy to be found in our lifetime.”

Another big difference!

The book, “Built to Last: Successful Habits of Visionary Companies” by Collins and Porras was published in 1994. In it, they defined the concept of a BHAG, a Big Hairy Audacious Goal. A BHAG is visionary in intent with a 10 to 30 year timeline. A good one is easy to understand, compelling and difficult. A true BHAG forces you out of your comfort zone into a new future. The Cerebral Palsy Alliance of Australia is working a true BHAG. Athletes, business leaders, and fundraisers for most human illnesses and injuries seem to understand the power of a big goal. In contrast, most Cerebral Palsy research and treatment groups in North America seem content with small, achievable goals of measuring functional levels, charting change over time and comparing various existing treatment programs. It is not surprising that funding for CP research and treatment in North America lags far behind the funding of other complex brain disorders such as Autism…over $200,000,000 a year and rising rapidly. In my view, if we can tackle a problem as pervasive and difficult as autism, there should be no reluctance to set a Big Hairy Audacious Goal for CP – A Cure In The Next 10 Years.

Maybe it is just that my thinking is altered by living in Toronto. This is the biggest city in Canada and is filled with people who like a challenge. The Princess Margaret Hospital is one of the biggest and best cancer research centers in the world. Their current fundraising goal is to raise $1,000,000,000… One Billion Dollars in the next 5 years! This money is being raised to support research and treatment programs to deliver personalized cancer care. Their goal is to cure cancer in our lifetimes. Another true BHAG!

Big goals do not guarantee a cure for everyone, but the search for cure sets a higher standard that improves the odds for recovery at all levels of severity. Currently, the “No Cure” philosophy is dominant in the cerebral palsy world. For most children, the highest goal is not normal or full recovery, but functional independence. In many areas, children with mild and even moderate levels of disability are routinely discharged from further therapy because they are “good enough”, defined as functional independence. School aged children with all levels of CP severity are often limited to school based therapy alone. This is not a criticism of school based therapists. Far from it. They are a talented group of professionals whose work is limited by the goals set by the payors and government. All their therapies have to meet an educational goal…not normal function.

I know of no other childhood disease or disorder where the children with the best prognosis for change are denied the care they need to fulfill their potential. As long as the professionals in pediatric neurorehabilitation believed that baby brains could not recover, it was understandable and even justified to accept a lower standard than cure. But some baby brains do recover completely (A New Way of Thinking About Recovery) and we need more research to figure out the “why and how” of recovery. In my opinion, the practice of discharging even the mildly affected child from active treatment is no longer “good enough”. Change is clearly required.

If we examine these issues from the perspective of a coach, a good part of the poor outcomes achieved in cerebral palsy care may be a failure to set our goals high enough. Much of the mental game in sports requires the young athlete to learn to never accept that where they are is good enough and to constantly push themselves to achieve more. There is an often quoted coaching maxim that describes what happens when you accept “good enough” as an outcome.

“If you set your goals low enough, it is easy to be satisfied with your results.”

Clearly change is needed and the time is now. I urge everyone with a special needs child to ask your therapy team for some BHAG goals. It is a necessary first step.

http://www.cdc.gov/ncbddd/cp/facts.html

http://www.aacpdm.org/patients/what-is-cerebral-palsyhttp://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm

http://www.ninds.nih.gov/disorders/stroke/detail_stroke.htm

Pape K. Developmental and maladaptive plasticity in neonatal SCI. Clinical
Neurology and
Neurosurgery 2012; 114: 475-482

http://www.cerebralpalsy.org.au/__data/assets/pdf_file/0008/3221/Strategic-Plan-2010-2013_UPDATED_1Page_LR.pdf

Read about the $1,000,000,000 5 year goal set by Toronto’s Princess Margaret Hospital to achieve the goal of personalized cancer care. Their longer term goal is to CURE cancer in our lifetimes.

http://ibelieveit.ca

Built to Last: Successful Habits of Visionary Companies by Jim Collins and Jerry Porras, New York: Harper Collins, 2002

The Bad – Brains take 3-4 years to recover, and there does not seem to be any way to hasten the pace of recovery. In adult brain injury, it seems that most of the initial recovery is in the first six months and then the process slows down over the next year. Between years two and four, there are still significant gains, but they are slower and harder to achieve. The problem with babies is that they have to learn movement patterns at the same time that the brain is recovering. Over the first four years, all the lower order motor movements are learned. By four years, children can run, jump and climb without problem. From this point on, in the normally developing child, the changes in higher skill acquisition are dependent upon exposure. Early injury frequently interferes with the acquisition of lower order motor skills. These abnormal patterns of movement, learned early, become the recognizable patterns of cerebral palsy or incomplete BPI recovery. (Recovery In Cerebral Palsy Takes Time (and Fresh Thinking))

The Ugly – Whatever your brain does, it learns to do better. “Neurons that fire together wire together. D.O. Hebb.” The ugly part of this elegant, feedback system of development and recovery is that brains are not judgmental. If you have spasticity, your body over time will learn to be more spastic. If muscle strength and pull is unbalanced, bones, joints and muscles will grow abnormally. There are many distortional changes in the first four years because of the rapid growth rate in this time period. The child completes half of their adult linear growth well before their 4th birthday.

For the baby with an early neurologic injury, learning to move against gravity is accomplished with a damaged brain in the process of recovery. The abnormal habits of a small child feel normal to them. They are the only movement patterns they know and they’re quite comfortable with them. Does this mean that all their movements will necessarily be abnormal? NO, they are early maladaptive habits! Human babies do not come with hardwired movement patterns. The movements they learn later in life with a recovered, more mature brain, may be perfectly normal. (The Boy Who Could Run Better Than He Could Walk)

I am often asked if these early habits can be changed and the answer is yes, but it takes time and focused, intensive training. That means to change a habit you have to wait until the brain matures. Small children will not be able to do the repetitive work that is required for skill improvement. For a firmly established habit, it seems you almost have to wait until the development of the frontal lobes with puberty. Abstract reasoning is one of the latest maturing parts of our brain along with the “executive functions” that allow the mature brain plan into the future and to be able to self-motivate to do the repetitive work of skill training.

Younger children can do skill training in music, sports, or even chess, but the motivation is usually external in the form of a parent or coach. I am a strong advocate of techniques like CIMT (Constraint Induced Movement Therapy) and focused intensive periods of bilateral hand training. Both of these therapies have been shown to be helpful in improving function…and changing habits. However, along with therapies that teach better movement patterns, it is of crucial importance to prevent or constrain abnormal growth of the body and limbs.

Alignment means keeping the bones, joints and muscles growing as close to normal as possible. If the body distorts, the movement pattern will be more abnormal. This means using more taping, TheraTogs, braces and splints, including night splints…whatever is required to keep the limbs straight. This concept is not new. Athletes will not exercise or compete with a joint out of alignment. Just watch your favorite professional athletes and you’ll see wrist, elbow, knee and/or ankle supports, all designed to keep the body in proper alignment during the sport.

Now, here are the facts…body distortion occurs as a side effect of cerebral palsy as the child grows. Long-term follow-up studies show that this body distortion contributes to chronic musculoskeletal pain as a significant disability in a high proportion of adults with cerebral palsy. In spite of this knowledge, the use of proper alignment supports is approached in a semi-optional manner by both therapists and parents. I cannot tell you how many times I have been told, “Johnny doesn’t like his brace”. Or another favorite, “Beth won’t wear her splints because it makes her look different”.

In my world, young children do not make decisions that will impact their future health and function. Equally I do not know any parent who would willingly do something that leads to pain in their child. It is time for a frank and open discussion about this issue. I believe that if parents know the long-term outcomes, the compliance with prescribed orthotics will be a whole lot better.

Who wears a splint 24/7? There are a few great examples in the orthopedic surgery world. Babies born with congenital hip dysplasia wear a special diaper splint for several years to allow their hip socket to develop normally. Imagine how difficult this is for a new mother and father to manage, 23/24 hours a day.

http://www.yalemedicalgroup.org/stw/Page.asp?PageID=STW027102

Legg Perthes is a disease that hits the older child’s hip, causing a necrosis or death of the head of the femur. Luckily, it can recover into a normal hip bone, but only if it is held in place and molded to the correct form. This means the child wears this type of a splint for years. This is an image of Cameron Mathison, actor and Good Morning America special contributor, showing the brace that he had to wear, night and day, for 4 years!

http://abcnews.go.com/GMA/overcoming-perthes-cameron-mathison-leg-braces-dancing-stars/story?id=8651022#.UJE2kbS7cVt

My last examples are the Milwaukee and the Boston Brace for idiopathic scoliosis. This problem is more common in young girls and again, they have to wear this bulky brace for years.

http://www.orthopediatrics.com/docs/Guides/scoloisis.html

In all these situations, the long-term outcome is clearly explained to the child and the parents. The goal is cure and the parents understand that it is necessary for their child’s best outcome. In the past, the goal for children with cerebral palsy has been set at functional independence. The new reality of human neuroplasticity means that the goal is set too low for many of the children.

What do you need to do if parts of your child’s body are not growing straight? Just like the parents of children with hip dysplasia, Legg Perthes disease or Idiopathic Scoliosis, I think you have a clear choice in front of you. The question is whether your goal is “good enough” or “personal best”? In my experience, growing the body in alignment is the first and most important goal of therapy.

The people to talk with are your therapist and surgeon and/or doctor to find out which alignment options are available in your area and what would be best for your child. If what you have now doesn’t fit, get it fixed. If high tone is the problem making an orthotic uncomfortable or ineffective, get a spasticity management assessment. The one thing that I can guarantee is that if the body is out of alignment, it will get worse as the child grows. The time to make this problem a priority is now.

In all these situations, the long-term outcome is clearly explained to the child and the parents. The goal is cure and the parents understand that it is necessary for their child’s best outcome. In the past, the goal for children with cerebral palsy has been set at functional independence. The new reality of human neuroplasticity means that the goal is set too low for many of the children.

What do you need to do if parts of your child’s body are not growing straight? Just like the parents of children with hip dysplasia, Legg Perthes disease or Idiopathic Scoliosis, I think you have a clear choice in front of you. The question is whether your goal is “good enough” or “personal best”? In my experience, growing the body in alignment is the first and most important goal of therapy.

The people to talk with are your therapist and surgeon and/or doctor to find out which alignment options are available in your area and what would be best for your child. If what you have now doesn’t fit, get it fixed. If high tone is the problem making an orthotic uncomfortable or ineffective, get a spasticity management assessment. The one thing that I can guarantee is that if the body is out of alignment, it will get worse as the child grows. The time to make this problem a priority is now.

You do not have to just take my word for this. Read some of the references below or talk to an adult with CP. I recently talked to an impressive group of adults at the annual meeting of the CP Group held in Washington, DC. (www.thecpgroup.org) Pain was a significant topic of discussion. It was difficult to see these intelligent, competent adults dealing with problems that in large part can be prevented with currently available technologies and treatments. They did not have a choice. Their treatment options were limited. There have been major improvements in medications, therapies and technologies in the last 10 to 20 years. We all owe it to the adult survivors to use what is now available.

References

1. Vogtle L. Pain in adults with cerebral palsy: Impact and solutions. Developmental Medicine & Child Neurology 2009; 51 s4: 113-121

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2009.03423.x/full

2. Schwartz L, Engel J, Jensen M. Pain in persons with cerebral palsy. Archives of Physical Medicine and Rehabilitation 1999; 80: 1243-1246

http://www.sciencedirect.com/science/article/pii/S0003999399900230

3. Jahnsen R, Villien L, Aamodt G, Stanghelle J, Holm I. Musculoskeletal pain in adults with cerebral palsy compared with the general population. Journal of Rehabilitation Medicine 2004; 36: 78-84

http://www.ncbi.nlm.nih.gov/pubmed/15180222

4. Opheim A, Jahnsen R, Olsson E, Stanghelle J. Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study. Developmental Medicine & Child Neurology 2009; 51: 381-388

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.03250.x/full

The statement “Neurons that fire together, wire together”, attributed to D.O. Hebb, is how we form Habits. Whatever we do, we learn to do better. Brains are not judgmental and they will wire both Good (Adaptive) and Bad (Maladaptive) circuits into the growing brain. The reverse process is also true. “Neurons that do not fire together, do not wire together”. The “Use It or Lose It” law, so often used by athletes training their muscles, also applies to brains.

In the months after a Brachial Plexus Injury, the baby has limited movement of the affected arm. The unaffected arm moves normally and with that movement, the baby wires awareness of the arm and hand into the brain. By three months, most children are bringing their hands together and able to look at and play with their fingers. Their first attempts at useful function are a midline grasp with both hands, but very soon after, they are able to bat at objects, then capture them, and finally bring them to their mouth. The child with brachial plexus injury has only one arm and hand that work, so all of these normal developmental steps are impaired. By the time their peripheral nerve injury has recovered enough to allow function of the affected arm, they do not know how to use it. This is what we have named a Developmental Apraxia. Deprived of normal movement, they do not wire into their brains a motor plan for the affected arm and hand.

In the paper cited below, we were not overly optimistic of the ability of the baby’s brain to rewire and restore normal function. In part, that attitude was due to the reality that the paper was published in 2000, a time when neuroplasticity was not as accepted as it is today. However, the editors of the journal, Neurology, were smarter than us! They published a companion paper in the same issue and an editorial by Michael Noetzel and Jonathan Wolpaw that discussed how the two papers related to each other. The other research paper, by Rollnik et al, demonstrated restoration of normal arm function in older children after a treatment protocol that combined botulinum toxin to inhibit abnormal muscle co-contraction with active focused exercise of the normal muscle groups. Their combined therapy inhibited the habitual muscle co-contraction pattern and the focused therapy taught the child a new motor plan that improved function. After a year of injections, the child’s new motor plan was in place and the co-contraction habit did not recur.

Since then, other pioneers in neuroplastic interventions such as Constraint Induced Movement Therapy (CIMT) have demonstrated that our human brains are much more capable of rewiring than we had ever expected. To date, most of this work is been done in adults with stroke and children with hemiplegia, but there are a few early studies demonstrating the same improvements in children with brachial plexus injury.

Developmental Apraxia is a new concept that should dramatically change the outcome for many children. In the bad old days, parents and therapists and even doctors quite reasonably did not do repeated neurophysiological testing to document nerve recovery. The techniques used employed sticking needles into the muscles and maximally stimulating nerves. Both these techniques hurt and babies do not tolerate it well. Without actually measuring the nerve/muscle interaction, we all assumed the persistent impairment meant incomplete nerve regeneration. This belief lead to a time limited approach to therapy…if the nerve has not completely recovered, the best we can do is teach compensatory strategies. Cure was not part of the equation. This thinking is now seen to be wrong-headed by a growing number of therapists. Reliable, inexpensive, surface EMG units are now available to demonstrate whether or not the nerve is there and trainable.

I will write more about how this technology can be used in coming posts. For now, I just want to emphasize that most babies with BPI do regenerate their damaged nerves. Monitoring this recovery improves our ability to refer appropriately for a surgical evaluation if the signal is absent, if it stays weak or if it slows down. Any deviation from the expected course of recovery, such as abnormal co-contractions, can be quickly referred for a full diagnostic neurophysiologic examination by a neurologist or physiatrist and treated with Botulinum injections if needed. If the signal grows stronger, moving down the arm with regeneration, then both the parents and the therapists know what they have to work with. I am quite convinced that the “Missing Piece” of the BPI puzzle is knowing how much nerve is present. If the therapist knows the nerve is regenerating, then they have many “tools in their toolbox” to help increase the baby’s awareness of the limb and this will lead to better function. The rehabilitation of these babies and young children needs to be more proactive. Developmental Apraxia is a common complication of BPI. Now it is time to actively try to prevent and/or improve it.

A fair number of therapists and physicians are now using EMG Biofeedback and I would appreciate it if you would tell us about your experiences. You can read more about surface EMG Biofeedback at www.advancedmusclestimulators.com.

Further Reading

1. Brown T, Cupido C, Scarfone H, Pape K, Galea V. Developmental apraxia arising from neonatal brachial plexus palsy. Neurology 2000; 55: 24-30

2. Noetzel M, Wolpaw J. Emerging concepts in the pathophysiology of recovery from neonatal brachial plexus injury. Neurology 2000; 55: 5-6

3. Rollnik J, Hierner R, Schubert M, Shen Z, Johannes S, Troger M, Wohlfarth K, Berger A, Dengler R. Botulinum toxin treatment of cocontractions after birth-related brachial plexus lesions. Neurology 2000; 55: 112-114

4. Buesch F, Schlaepfer B, de Bruin E, Wohlrab G, Ammann-Reiffer C, Meyer-Heim A. Constraint-induced movement therapy for children with obstetric brachial plexus palsy: two single-case studies. International Journal of Rehabilitation Research 2010; 33: 187-192

The timeline doctors use to assess recovery in the relatively mature brain of a teenager or an adult with stroke is similar. The first six months after injury are crucial with a rapid return of function in the majority of people with a mild injury. During the next 6 to 12 month period, major improvements are possible but they tend to be at a slightly slower rate than in the first six months. In the second year and through to the third or fourth year, gains are still there but they are slower and require more intense work on the part of the patient and the therapist. Even in an adult with an old deteriorating brain, the 3rd to 4th year period is not the end of possible change, but change is harder to achieve. It usually requires adding a novel, challenging intervention such as Constraint Induced Movement Therapy (CIMT) rather than routine therapy. In adults with a chronic stroke, CIMT has been shown to produce significant improvements in upper limb skills. There is also some early evidence that the improvements are associated with measurable changes on PET scans. (http://www.nature.com/jcbfm/journal/v25/n12/abs/9600158a.html)
The logical error that has occurred in pediatric neurorehabilitation is the application of a three to four-year timeline of recovery to a baby with a growing immature brain. Babies have brain neuroplasticity, but human children also have the advantage of developmental plasticity. It has been estimated that at age 3 years, less than 30% of the adult mature brain is wired and functioning. What we see at age 3 years is the extent of recovery from the primary damage to the corticospinal system. What we do not see is the further improvement that is only possible as the brain matures and all the other systems that contribute to adult motor function come “on-line”. Can you teach a three-year-old how to play tennis or hockey?

In spite of the immaturity of the 3 to 4-year-old brain, all of the literature supports the concept that an accurate prognosis may be given for a child with cerebral palsy at this age. Trying to assign a prognosis earlier is fraught with error as many of the children, initially thought to be damaged, recovered. They demonstrated sufficient baby brain neuroplasticity to fully recover from their injury. For those that do not fully recover, there are numerous studies in the literature that have looked at the child’s severity classification at this age and the results are clear. The majority of children stay at the same level of severity or deteriorate with growth during their teen years.
http://jama.jamanetwork.com/article.aspx?articleid=195300

The problem with these studies is that they are measuring the severity of the child’s early acquired Habits at baseline and they find no change in these early acquired Habits at later follow-up. I interpret these results as excellent proof that “doing more of the same harder” does not produce anything beneficial. I have demonstrated over and over again on this site that Habit Hides Recovery… The child’s early movement patterns are abnormal because they were learned with a damaged, immature brain. Later movement patterns are learned with a recovered, more mature brain and they may be NORMAL.

We walk and run with the same parts of the brain, yet in The Boy Who Could Run Better Than He Could Walk, the young boy walks with a limp and played soccer brilliantly. (see: The boy who could run better than he could walk) His brain had clearly recovered because he is able to run normally, with a four point reciprocal pattern. We do not need to teach him how to walk, we need to change his Habit.

Christine, shown below, still walks with difficulty as her walking pattern is an early habit and habits are hard to change. With lots of hard work, she now jogs in the water with a perfect four point reciprocal pattern and is learning to move across the tennis court. I may be able to move across the court faster than her, but her forehand volley is better than mine. (see: Adult water exercise results and What is the diagnosis) These photos show the same woman…in the tennis picture, it is hard to think she could have any problem with movement.

Over the next few months, I am going to be exploring what parents and therapists and doctors can do to limit the severity of early maladaptive or “bad” habits while the brain recovers. This is really the work of the first four years of life. Then we’ll start to talk about how to change established habits. Most of what I’ve learned about changing habits has come from my exposure to excellent coaching in my youth and studying the new information available in the fields of exercise science and kinesiology. Much of what I’m going to discuss is obvious to people who have played competitive sports and received good coaching. Unfortunately, it is news to most health scientists and practitioners.

The principle of human neuroplasticity has been an established scientific fact for many years. It is a true “Game Changer” for all of us who are interested in children with Cerebral Palsy or Brachial Plexus Injury. Human brains are able to repair, re-grow, rewire and reallocate functions after injury, yet there is little evidence of change in clinical practice. Just this year I relieved an email from a prominent clinical neurologist who baldly stated that he “did not believe” that neuroplasticity applied in cerebral palsy. This email is evidence of a widespread problem throughout pediatric neurorehabilitation.

I was fortunate to be exposed early to the concepts of human neuroplasticity by Professor D.O. Hebb in Psych 101 at McGill University in Montreal. Hebb taught that human brains were capable of recovery and gave us a wide range of clinical examples to prove his point. One example was about a young man who had a significant amount of his brain removed for the treatment of cancer. He recovered fully. I do not remember how old he was at the time of his surgery or exactly how much brain tissue was removed, but this story is very consistent with the results of a surgical procedure called a hemispherectomy. This brain scan image is taken from a case study published in the Lancet 359:p473, 2002 by Borgstein & Grootendorst. Their patient was a girl who developed chronic, focal encephalitis with severe unremitting seizures at age 3 years. She developed a right-sided hemiplegia that was severe and had regression of all her language skills. The seizure focus was in the left hemisphere. The neurosurgeons removed the entire left hemisphere, the area of the brain that controls speech and movement on the right side of the body.

This case study was published because of her excellent response. By age 7 years, the seizures had resolved and her speech had fully recovered. She was bilingual in both Turkish and Dutch. A slight residual tightness on the right side was the only evidence of her previous right-sided hemiplegia. She had no functional limitation in her movements. This one child is proof positive that human brains are capable of very significant recovery. At three years of age, she still had enough brain plasticity to rewire and reallocate all of her previous left hemisphere functions over to the right hemisphere.

Neurosurgeons know the results of both partial and complete hemispherectomy can be excellent. Yet when I discuss these surgeries and the results achieved with pediatric audiences, many physicians and therapists are surprised. It is a good example of the dangers of knowledge specialization. On my trip to Australia earlier this year, I had the opportunity to reconnect with several of my old neonatology colleagues. They had no problem with the concept of baby brain neuroplasticity because they had all seen some children with large brain hemorrhage and/or periventricular leukomalacia (PVL) that had developed normally in spite of early damage.

All health care practitioners suffer from volume overload. Medical knowledge is doubling every 3-5 years and no one can expect to keep current with all the available knowledge. But parents of a child with an early brain or nerve injury can do better because their interest is focused on just their child. Over the next few months, I will be posting information on the key principles the parents need to understand if they hope to achieve the best possible outcomes for their child. I believe that parents need to learn how to be effective advocates for their child. The starting point is neuroplasticity. Some children recover completely. The sad truth is that we do not know why they do recover. But until people start doing the studies of the children who do well, we can all recognize that the possibility of further recovery exists throughout life and we all need to set our standards higher.

This is the link to see the interview.

http://winnipeg.ctvnews.ca/video?clipId=759928

I have been watching TED talks for years, so it was a great honor to be asked to share my ideas about neuroplasticity in children at the TEDx Winnipeg event. I will post a link to my talk as soon as it is available.

My favorite areas on the TED.com site are the themes “How the Mind Works” and “Medicine Without Borders”. Here are a few great ones that discuss brain recovery and how to change habits. They will get you started on a wonderful adventure in learning how our brains work.

http://www.ted.com/talks/michael_merzenich_on_the_elastic_brain.html

Michael Merzenich’s talk is brilliant. It will give you a good understanding of the potential for change in our brains, from babies to senior citizens. He is one of the key pioneers in the study of “activity dependent neuroplasticity” and I am indebted to him for providing some of the scientific backing for my theories of a new way to do pediatric neurorehabilitation.

http://www.ted.com/talks/vilayanur_ramachandran_on_your_mind.html

This talk by Vilayanur Ramachandran, at first, does not seem to relate directly to babies and children with early neurological injury, but watch the middle section about mirror therapy for phantom limb pain and stroke rehabilitation. He has discovered a truly innovative treatment that applies to children and adults with cerebral palsy and brachial plexus injury. The twin concepts of learned spasticity and the power of visual input are important to children with early neurological problems and we will be talking about these exciting findings in future posts.

The answer is as simple as taking out your smart phone and documenting the child’s “best” performance. These photos, put into a simple scrapbook, effectively raise the bar on everybody’s expectations. It is well known that every human behavior has a range of performance. The standard deviation of a performance is a measure of consistency. The smaller the difference between best performance and worst performance, the more consistent the child is across different situations. The wider the variation is between different levels of performance, the higher the standard deviation.

In a previous post I have used the example of a child with a variation in his walking ability.

How to Uncover Recovery Hidden by Habits

The same variation in ability occurs in children with an expressive speech difficulty. These children characteristically have a very high standard deviation in their ability to speak. Speech can be quite normal at home when rested and relaxed. The same child’s speech abilities deteriorate rapidly when tired or stressed and particularly in an unfamiliar situation with strangers. The problem is pretty obvious. When new people, adults or children, meet this child for the first time and communication is difficult, the tendency is to avoid direct interaction as much as possible. Think how that first impression of a child would be changed if the new teachers and children could see them talking well on a short introductory talk, filmed at home, on a tablet. If they know how much better the child can speak sometimes, then they will realize how much of the current communication problem is nervousness, not inability.

Children with other disabilities can have a similar variation in their abilities to use their hands, an important skill in a classroom setting. This is where both parents and therapists can help by documenting best eating skills as well as coloring, drawing or writing. The confusion between what new people “think” a child can do and what they actually are able to do was brought home to me when I watched a young boy with athetoid cerebral palsy play with his iPad. At home, he could rapidly manipulate the controls of all his favorite games. At school, a stranger evaluated him for a communication aid in an unfamiliar classroom. This testing protocol was not designed to produce a good result. In this situation, he could not use his hands in a useful manner and the recommendation was he used an eye switch control unit. When his parents documented his “at home” skills, the school system agreed to let him use his iPad as his major communication device. This system worked better for everyone.