Cerebral PalsyDo we know it all? By Rajul vasa B. Sc. P T Applied movement scientist Mumbai [India]
Till date……… Till date what is well understood is that cerebral palsy is a non progressive condition from lesion in the brain, at birth before birth (intra uterine) during infancy or childhood. It is also known that with growing age child does deteriorate with ongoing secondary and tertiary problems of muscle contracture, joint stiffness, spasticity and abnormal dyskinetic movements.
Current belief….. Cerebral palsy cannot be cured, but a host of interventions can improve functional abilities, participation, and quality of life Peter Rosenbaum in Cerebral palsy: what parents and doctors want to know [BMJ 2003;326:970–4] Todays mainstream physical rehabilitation methods of cerebral palsy is "managing" the child with his limitations because treatment is only palliative. Unfortunately as Physical medicine continues to remain in primitive state, dependence on expensive high tech engineering devices is on increase to help ambulate child instead of equipping the child’s brain and body from within for independence.
No cure! No cures are available or imminent for the majority of the disorders that have been categorized as CP, and potential positive effects of most interventions on most individuals with CP tend to be modest at best. Damiano DL. Activity, activity, activity: rethinking our physical therapy approach to cerebral palsy. Phys Ther. 2006;86:1534 –1540.
Foreseeable future For at least the foreseeable future, cerebral palsy will not be a curable disease and we will not be able to reverse the underlying Pathophysiology. Therefore, the goal of treatment is to assist with the child’s motor and cognitive development and to prevent the occurrence of secondary injury1. Ref: Is Cerebral Palsy a Wastebasket Diagnosis? Terence D. Sanger, MD, PhD Journal of Child Neurology Volume 23 Number 7 July 2008 726-7282. Ref: A systematic review finds that methodological quality is better than its reputation but can be improved in physiotherapy trials in childhood cerebral palsy by Regina Kunza et al Journal of Clinical Epidemiology 59 (2006) 1239e1248
Is Cerebral palsy a wastebasket diagnosis? Perhaps intended image of the term “wastebasket diagnosis “ is many different etiologies are thrown together in a single syndrome without any attempt at establishing order. Furthermore, a wastebasket is not just a receptacle; it is a receptacle with a purpose. So an additional intended image might be that a diagnosis, once thrown in the wastebasket, can then somehow be discarded because it fulfills no useful therapeutic role. Another image that is perhaps unintended but that nevertheless reflects a frequent and unfortunate reality is that a child with a wastebasket diagnosis may be discarded as well, in the sense that child neurologists are not often involved in the long-term care of children labeled with “cerebral palsy.” Is Cerebral Palsy a Wastebasket Diagnosis? Terence D. Sanger, MD, PhD Journal of Child Neurology Volume 23 Number 7 July 2008 726-728
Costs Cost of services to these children and their families is substantial, with health costs alone estimated at $1,406 per family per year (over $6 billion per year) . Non- reimbursed costs to families for services, equipment, and lost family income can amount to thousands of dollars each year. Honeycutt et al.  state that the extra economic lifetime costs associated with cerebral palsy is $800,000 per person.  U.S Department of Health and Human Services: Research plan for the National Center for Medical Rehabilitation Research. Washington, DC: U.S. Department of Health and Human Services; 1993.  Honeycutt AA, Grosse SD, Dunlap LJ, Schendel DE, Chen H, Brann E, Homsi G: Economic costs of mental retardation, cerebral palsy, hearing loss, and vision impairment. In Using survey data to study disability: results from the National Health Interview Survey on Disability. Research in Social Science and Disability, 3 Edited by: Altman BM, Barnartt SN, Hendershot GE, Larson SA. Amsterdam: Elsevier; 2003:207-228
In Sweden there was a lively debate criticizing child and youth rehabilitation for being too pessimistic about the development of the child, making the children passive by compensating too much with assistive devices and environmental adaptations and failing to support active functional and more intensive training. There was also a debate among professionals whether treatment of the capacities of the child was sidelined in favour of actions taken to support social aspects and participation of the child in their environment. Another suggestion as to why treatment was sidelined was the uncertainty about treatment effects and utility from the aspect of health.Ref. effectiveness of intensive training for children with cerebral palsy – a comparisonbetween child and youth rehabilitation and conductive education Pia O¨ dman andBirgitta O¨ berg J Rehabil Med 2005; 37: 263–270Ref. Forssberg H, Sanner G, Ro¨sblad B. Renaissance for physiotherapy intreatment of Cerebral Palsy. [Rena¨ssans fo¨ r sjukgymnastik I behandling av CP-skadade]. La¨kartidningen 1998; 95: 1660–1664.
Part and Parcel Poor general health conditions, repeated infections with cough, cold, fever from slightest changes in weather, indigestion, bowel troubles, softening of bones, bony growth disturbances with without mal formation of bones and joints, delay in motor development with perceptual cognitive difficulties, sometimes hearing and visual problems, memory problems, seizures, reflex muscle twitches invariably misunderstood as seizure, spasticity, contracture are considered as part & parcel of the condition.
Contemporary treatment Treatment of CP children is palliative, symptom based. Attempt in multidisciplinary rehabilitation efforts is to analyze the severity of the symptoms and the condition to manage the lives of CP children and support higher levels of function with use of special devices! Contemporary physiotherapy interventions attempt to stretch Muscles to their limits on a regular basis to maintain length. Stretching is highly painful and tightness reappears again and again despite regular stretching. This must make all of us to rethink how fruitless is stretching and should child go thro’ painful regime for no gain?
Physical therapy Physical therapy, along with orthopedic surgery, has been the mainstay of the rehabilitation management of CP for decades but What is less clear is the extent to which physical therapy can alter the motor prognosis or make a clinically significant change in the level of disability or degree of participation for any given child. Traditional therapy approaches have been shown for the most part to be marginally beneficial ref DeJong G, Horn SD, Conroy B, et al. Opening the black box of poststroke rehabilitation: stroke rehabilitation patients, processes, and outcomes. Arch Phys and demands serious Med Rehabil. 2005;86(12 suppl 2):S1–S7. reconsideration to re evaluate if, therapy offered itself is the cause of concern in terms of painful passive stretching of muscles without much benefit except suffering pain.
Packaged Approaches Pediatric neuro rehabilitation in contrast to adult neuro rehabilitation seems to be more “susceptible” to packaged approaches that incorporate many different types of exercises, making it more difficult to decipher the active ingredients that may be producing any positive treatment effects that are seen we need to identify what specific treatments, components of treatments, or “doses” of treatments work and to ultimately be able to prioritize treatment options based on relative efficacy in specific patient groups.
Radical reorientation in thinking Neuro-developmental therapy approaches, which espoused for many years that one should “never strengthen spasticity” because this would only serve to worsen spasticity and make patients stiffer. Based on research evidence to the contrary, the incorporation of strength training into physical therapy regimens for people with CP and other CNS disorders has become increasingly prevalent over the past decade. A systematic review published in 2002 listed 10 studies that showed consistent and significant gains in strength as a result of varied short-term programs in both the upper and lower- extremity muscles in individuals with CP. ref Dodd K, Taylor N, Damiano DL. Systemic review of strengthening for individuals with cerebral palsy. Arch Phys Med Rehabil. 2002;83: 1157–1164. ) this is a radical reorientation in thinking , yet the CP child around the world is struggling to get out of the clutches of therapy that does not promise cure and rehab experts are not ready to see the negative side of therapy itself.
Effectiveness of therapy? It is difficult to evaluate the effectiveness of any motor therapy approach for a host of reasons. Chief among them is that standardizing the treatment is difficult as there is no discrete dosage administered under specific, invariable constant condition. The dosage or amount of time in therapy could be held constant, but specific aims of different therapists vary. While the treatment setting could be standardized, the child’s family background and educational intellectual capacity varies and cannot be standardized. Medical treatment and dosages of sedatives also may not be constant.
Dosage The ‘dose’ of physiotherapy intervention (e.g., frequency, duration, etc.) is often decided following tradition and modified by economic considerations; the dose is seldom evidence-based and therefore the optimal dosage is not known.
Evidence based research and clinical research Research evidence is important to be able to generalize any treatment approach universally. When it comes to movement science there is infinite variability in physical movement and there is unlimited influence of forces on movement variability. Scientific research design has highly restricted boundaries and dichotomizing is critical essence of evidence based research. Scientific research in movement science leaves behind critical essence of Macro; one whole to focus on micro.
Global Local Focus on local is another critical issue in evidence based research making the conclusions made from tubular vision without any light from integral interrelations among global when human body and brain and all major physiological systems work in integration with one another for homeostasis. Human body and brain always remains under high influence of gravity.
Investigations information necessary for developing postural motor control of a child is "written“ & “expressed” by the musculoskeletal system directly therefore instrumental methods of diagnostics (MRI, X-rays, EEG, EMG etc.) becomes only of supplementary value as against the value to money if compared with the physical assessment.
Parent’s frustration Parents in search of solution visit different multidisciplinary experts for expensive treatment but get frustrated when these experts usually end up only with special evaluations to identify special label to be given to their child under the umbrella term cerebral palsy to learn that there is no cure and they could try alternative medicine, acupressure, acupuncture etc but must stretch tight muscles every day and assist their child in function and that parents need to learn how to cope with the child’s day to day needs and be mentally prepared for future surgical needs to release contracture and tightness in adductors of hip for basic hygiene and cleaning etc.