CEREBRAL PALSY - DIFFERENT POINTS OF VIEW

Even though cerebral palsy is a disorder that was described more than one hundred years ago, there are still no prevailing attitudes towards it. There is virtually no consensus on matters concerning cerebral palsy among experts, be it in Croatia or in the world. Perhaps that is good because it can be interpreted to mean that there are many experts who deal with cerebral palsy and thus we can hope to achieve major breakthroughs in the future.

Since there is no consensus about many things, and since opinions are often diametrically opposed, the majority of experts base their approaches on their own experience.

Here we will try to put forward our experience and attitudes and compare them to other points of view, that are in agreement with or opposed to ours.

Such a situation - where there are conflicting attitudes and opinions - is the most difficult for the parents because they have to decide to believe someone regarding a situation that is not simple and about which they often don't know much or about which they know only one side of the story. Nevertheless, the key to the success of the child in therapy is trust in his doctor or therapist.

Is it possible to prevent cerebral palsy?

DIFFERENT OPINIONS THE POLYCLINIC'S OPINION

In this discussion about prevention we are not thinking about prevention during pregnancy or delivery, but rather about prevention of the development of a clinical picture of cerebral palsy after damage has occurred. 

Essentially the experts, based on their opinions on this, can be split into two groups. 

One group of experts believes that cerebral palsy is
a condition that cannot be influenced in terms of prevention, that is, if the damage is such that it will result in cerebral palsy, no treatment will prevent its development.  This group prefers making diagnoses at a particular age; some even make diagnoses in
the maternity ward.  However, the majority of experts wait until even the child's fifth year of life to make a conclusive diagnosis. 

The other group of experts thinks that cerebral palsy is a disorder that can, but does not necessarily have to, develop.  A number of factors influences its development.  One of those factors is, of course, the degree of (brain) damage; however there are known cases of children with cerebral palsy in which the cause was unknown, that is, it was impossible to prove the presence of a cause with existing technology.  Two other crucial factors are timely diagnostics and appropriate therapy.  Experts are further divided in their opinions about what timely diagnostics and appropriate therapy are.

If a child (or group of children) with a defined deviation from normal motor development and degree of brain damage - let's say sufficiently large that there is no doubt that it could result in cerebral palsy - after completing rehabilitation shows no signs of impairment or disability of any kind, one group of experts will say that the development of cerebral palsy was prevented because appropriate action was taken.  Sceptics, on the other hand, will say that the wrong diagnosis was made and that it was not possible for those children to develop cerebral palsy.  

For these reasons, among others, it is impossible to reconcile these two groups of experts and to answer the question of whether or not it is possible to prevent cerebral palsy.  The same child cannot both be treated and not treated. When one takes two children, or two groups of children, it is always argued that no two children are alike and that there are a whole series of circumstances by which they are different, which is of course true.   However, there is research that is sufficiently indicative to show that prevention is possible.  Naturally, the other group of experts in their research show that prevention is not possible. 

Unfortunately this profound difference in opinion can confuse people, especially the parents of a child hindered in development, and they are the ones who will have to decide whom to trust.


It need not be stressed that our polyclinic is inclined towards the second group of experts who believe that cerebral palsy can be prevented.  

Long ago, in 1978, Prof. Stojčević Polovina investigated what happened with children who underwent early rehabilitation and those who didn't, despite an established indication.  The children were divided into groups on the basis of their level of deviation from normal motor development, which was recorded during an examination.  It was clearly established that cerebral palsy emerged more often in the group of children who didn't undergo rehabilitation than in the group of children who did, although the children in both groups were at the same level of deviation from normal.  

In our work at the polyclinic we have been witness to the recovery, after therapy, of children with severe brain damage who were diagnosed early on with cerebral palsy.  Since it isn't possible to cure cerebral palsy, our answer is that rehabilitation prevented the development of cerebral palsy and the diagnosis of cerebral palsy was made too early.  For that reason, not only should practitioners not be hasty in making such a diagnosis, but rather they should be extremely cautious. As long as a child is making progress with rehabilitation, the practitioners should be cautious about deciding to make a diagnosis of cerebral palsy or not, because the assessment of the final outcome of the disorder will depend on them.  There are known cases where children have "outgrown" cerebral palsy, which is, of course, impossible; what was involved was a prematurely established diagnosis.  

One of the qualities of private practice (in Croatia), which has changed significantly in the last few years, was that children who had first undergone therapy in state institutions were coming to private clinics for rehabilitation after becoming dissatisfied with the progress made in state institutions.  Thus we received many children with few or no motor abilities who started our rehabilitation programme at about one year of age or older.  These children could often not hold their heads independently, they had no hand function - briefly stated, they had virtually no independent capabilities.  We believe that no one can state that such children would not have developed cerebral palsy, although one has to be careful because the literature states that there is a 10% probability of spontaneous recovery even in severe cases (although we have never seen this). From today's perspective, the progress made in some of these children is more than apparent, and in one, albeit smaller group, the children have reached an almost normal level of motor development, especially when one compares this to their initial clinical pictures. Many of these children are still in therapy, but all of the children who are currently in a rehabilitation programme have made undeniable progress; for example, they have achieved head control, satisfactory and even excellent hand function, they have acquired the ability to sit independently, and the majority are even able to get into a sitting position on their own, to crawl, and some are even able to walk. 

Five years ago a study that included 24 children with severe brain damage was begun.  The children were put into therapy according to the Stoj�evi�-Polovina rehabilitation principle in conjunction with intensive participation on the part of the parents.  The results of the progress made were presented at several international conferences and they can be considered extraordinary. 

Such cases cannot be compared to cases in which therapy was begun early on, that is, with the progress made by children who came to the clinic in the first nine months of life, and especially with those who started our programme within the first three months of life.  (However, one has to be cautious here since many of the children in the study had received therapy before starting our rehabilitation programme; this, again, leads us to another fiercely debated topic, which is, "Are all therapies equivalent or equally valid?").  Children with a defined level of damage progress considerably faster and better the earlier a diagnosis is made and the earlier that therapy is begun.  It can be said that the earlier that therapy is begun, the more progress that is made and the less overall effort that is needed.  However, it is difficult to say here that the "absence" of cerebral palsy is entirely due to the therapy because it is not possible to exclude the possibility of spontaneous recovery.   Nonetheless, the probability of the emergence of cerebral palsy can be judged by the amount of brain damage seen on cranial ultrasound, so if we manage to prove that with therapy the incidence in a particular group is lower, we then have proof of the effectiveness of the therapy.  However, that requires a control group of children who will not be given therapy, which is morally and ethically unacceptable, and is only possible if and when parents refuse to have their children undergo therapy, which is today far less common than before. 

Can cerebral palsy be cured?

DIFFERENT ATTITUDES THE POLYCLINIC'S ATTITUDE



This is one question on which virtually everyone will agree. Cerebral palsy is a condition which cannot be cured. It is not unchangeable; it changes over time.

Prije 1997. godine u opisivanju cerebralne paralize koristili su se opisni termini za izražavanje težine cerebralne paralize (teška, lagana i slično). Takva nejasna terminologija je otežavala praćenje razvoja bolesti i suradnju među različitim stručnjacima.

Navedene godine objavljena je klasifikacija težine kliničke slike cerebralne paralize (GMFCS klasifikacija, Palisano i suradnici, 1997) u odnosu
na dob djeteta. Najvažnija karakteristika navedene klasifikacija je njena stabilnost, što znači da dijete klasificirano u određeni stupanj težine cerebralne paralize će vrlo vjerojatno na istom stupnju ostati
ili ako će se mijenjati,s vremenom će se vjerojatnije pogoršati nego poboljšati.



Cerebral palsy, of course, cannot be cured. 

Nevertheless, there have been children who have come to our polyclinic already diagnosed with cerebral palsy and with clearly defined handicaps, many walking like cerebral palsied children.  After extremely hard and years-long work following the (widely-disputed) rehabilitation principle, these children have attained the motor competence of healthy or virtually healthy children in whom minor deviations from normal motor development are able to be observed only after detailed examination of specific skills by a specialist.  In any case, these deviations from normal are minimal enough that these children are able to live identically to their peers and are not able to be distinguished from others on the street. 

The question is whether or not we have cured cerebral palsy; the answer is no.  In our opinion these children were prematurely diagnosed with cerebral palsy and everyone gave up on the attempt to normalise the children's movement.  This brings us back to our opinion that practitioners have to be more than cautious when diagnosing children with cerebral palsy or predicting the onset of the disorder but also that parents should be presented with all the options that exist because the final choice must be theirs.  

It is virtually impossible to correct or change postures in children who have adopted pathological (abnormal) postures, especially when these are related to function.  "Virtually" is the key word in the preceding sentence because as much as it means that it is not possible to do something, at the same time it means that in rare cases it is possible to do something. The rehabilitation of such children is extremely demanding, it places considerable stress on the entire family and there is only a remote possibility of completely correcting the pathological postures and replacing them with normal ones; (Or more simply put, there is only a remote possibility of "recovery", although that word should for all practical purposes not be used in the context of cerebral palsy).  Nonetheless we believe that parents need to know about this option as well, and that even if rehabilitation does not result in the normalisation of function it results in visible improvement of function; the final decision is then up to them. 

A significant number of parents at our polyclinic have chosen this option, and some of them have had happy endings to their stories and can no longer call themselves parents of special needs children; they are now parents of healthy children.  For some, rehabilitation is ongoing and the end result is not known; however, even these parents are satisfied with the progress that their children have made because they would otherwise not have endured the many years of hard work.

What is cerebral palsy therapy like?

DIFFERENT ATTITUDES THE POLYCLINIC'S ATTITUDE



As we said at the beginning, cerebral palsy is an incurable disorder.  The goal of cerebral palsy therapy is to maximally improve the functional capabilities of the individual, improve his quality of life, and allow him to lead an independent, or as independent as possible, fulfilled life. 

However, opinions about cerebral palsy therapies are every bit as much divided as they are about other matters concerning cerebral palsy.  

Some experts believe that cerebral palsy therapy, above all, physiotherapy, has virtually no effect.  Nevertheless, no one dares to advocate a complete cessation of therapy; these experts believe, however, that parents should be told what their children will be capable of doing on the basis of specific parameters, and that they should not be given false hope. 

Naturally, other experts believe that therapy is essential, which is our attitude as well.  

Another debate regarding therapies concerns how much therapy is required (the therapy dose) and again, the opinions are varied. Some experts advocate therapy once per week, others, daily.  Some carry out therapy for 30 minutes, while others for even 6-7 hours a day.   Some believe that intermittent intensive therapy has a better effect than less intensive daily therapy. 

And finally there is the question of which therapy. 

In Croatia, and in the majority of the rest of the world, the number one therapy remains the therapy developed by the Bobaths, Neuro-Developmental Treatment (NDT).  The next most common therapy is the therapy according to Vojta, which is under-represented in Croatia.  However, there are many therapies, for example, the Kabath technique, conductive education, stretching programmes, strengthening programmes, hippotherapy, and numerous others that don't have specific names but rather represent a combination of therapies organised by particular rehabilitation centres.  In fact, even when a particular therapy is given, for example, therapy according to Bobath, the way in which it is given depends to a great extent on the rehabilitation centre where it is carried out, the knowledge and experience of the specialists and the assessment of the child's needs and the goals set, and it is unlikely that it will be the same in two places.  

According to some, therapy is divided into therapy that focuses on the normalisation of movement and therapy that focuses on functional mobility.  Both Bobath and Vojta therapies belong to the first group, although therapy according to Bobath is becoming more and more a method focussing on functional mobility.   As its name suggests, the goal of the first type of therapy is to achieve normal movement, which would subsequently enable better and easier functioning, while the goal of functional mobility therapies is to practice specific functions directly, while not insisting on normal movement. As in all of the things mentioned so far, there are some experts who advocate one approach and others the other approach, the first believing that the first approach is more effective and the second group the second approach. 

The official opinion of the profession is that there is no definitive proof that one type of therapy is better than another.  Unfortunately there is not even any proof that a particular therapy works.  That may be why those first experts believe that all types of therapy are pointless.  

We mustn't forget that cerebral palsy is a complex condition that often, but not always, comprises other associated problems that must also be treated.  Depending on the individual problems, it is necessary to include a special needs educator, a speech therapist, an occupational therapist, a music therapist and other specialists, as required, in the treatment programme. 

From this it is clear that a child with cerebral palsy must have his "own" rehabilitation team.  There are different types of team, which we will not elaborate on here but will merely point out that the rehabilitation team for a child with cerebral palsy must be interdisciplinary.  That means that every member of the team must at each moment know what the other members of the team are doing, and the goals set must be compatible because if each member of the team pulled in his own direction, there would be more harm done to the child than help.  This kind of team isn't especially complex, it only requires a high level of mutual communication among specialists and agreement on implementing treatments.  The rehabilitation team is led by a specialist for physical medicine or, it is perhaps better to say that he coordinates their work. 



Cerebral palsy requires life-long therapy because even though it is an incurable disorder it changes over time.  One certainly has to try to prevent contractures, dislocation (luxation), atrophy, and all of the other negative developments of cerebral palsy that result in the reduction of function. 

At any rate, if daily exercise is good for a healthy person, why wouldn't the same be true for a person with cerebral palsy?

It is difficult to give an unambiguous answer to the question about which type of therapy is the best, because this depends on many factors, including the clinical picture and the age of the person.  Naturally, the programme for a child of five is not the same as the programme for a man of 25.  

In children, especially younger children, we can basically say that we believe that our goal should be to try to normalise movement as long as there is a prospect of minimising pathological postures, but without necessarily expecting that ideal normal postures will be reached.   The reason for insisting on normal postures is because they enable the best functions - the way a "healthy" person functions is energetically, biomechanically, and in every other way optimal.  We strive towards that optimum with cerebral palsied children even if this is not always completely feasible; however, every step closer to "normal" facilitates the carrying out of certain functions.  What we wish to say is that the goal of "opening up a spastic fist" is not for that fist to be open because that is normal, but because with such an open fist it is easier to grasp objects and, for example, to eat independently (although there are other prerequisites for that). 

With an older child or an adult, the programme has to be based on maintaining existing functions and the general state of being; however, improvement should never be excluded as a possible outcome.  

With respect to how much therapy should be carried out, again the basic answer is as much as possible, but under a number of conditions. 

The younger the child, the larger the "therapy dose" should be; if possible, it should last all day and be continual.  As with athletes, success is almost always proportional to the invested effort - 1% talent, 99% hard work.  The complete rehabilitation programme organised on behalf of the team by the physiatrist includes, as required, physiotherapy, special needs education, speech therapy and other procedures, many of which can be carried out simultaneously. 

As the child gets older, the goals of therapy, as well as the possibilities, are reduced, and the child's other needs come more into play.  It is important that the rehabilitation programme continue to be "as extensive as possible", but it is also important to remember to include other activities, such as going to nursery school or participating in activities that the child can participate in and enjoys.  When it becomes possible, the child should be taught to do everything that he can do, independently, and as an obligation, in the same way that a child with diabetes is taught to independently control his sugar levels and to take insulin. 

In the older child and the adult one needs to reach a compromise.  The rules continue to be valid - the more extensive the therapy programme, the better the results; however, in this case, the numerous other obligations and desires, such as school, learning, work, family, self-fulfilling activities and so on must also be taken into account.  Each person has to come to a compromise that will allow him to be as fulfilled and happy a person as is possible.