In this article
- Infantile cerebral palsy, definition and symptoms
- Early signs
- Treatments and therapies
- How children with infantile cerebral palsy live
Infantile cerebral palsy: what it is and how it manifests itself
responds Gianni De Polo, child neuropsychiatrist and physiatrist, head of the rehabilitation centers of the La Nostra Famiglia association in the Conegliano and Treviso offices.
"The expression infantile cerebral palsy refers to a diverse group of neurological changes characterized, as the lowest common denominator, by a permanent but not immutable disturbance of posture and movement due to a damage that occurs before birth, during childbirth or within the first two years of life. When, that is, the brain is in full evolution ".
Disorders of posture and movement
Posture and movement disorders can be of various types, depending on the brain areas affected by the neurological alteration. In particular, the following forms are distinguished:
- spastiche, with persistent rigidity, representing the stereotype of the child with cerebral palsy;
- distoniche, characterized by intermittent contractions of certain groups of muscles;
- topsiche, in which the movement appears to be in fits and starts, not fluid;
- athetotic, characterized by continuous involuntary twisting movements of the extremities of the limbs or of the face.
"Sometimes - adds De Polo - these forms occur in association".
With respect to the localization of the disorder, conditions can be distinguished that affect the limbs of only one side (emiparesi o emiplegia), or both sides (tetraparesis or tetraplegia), only the upper limbs or only the lower ones.
Only in a modest part of cases, however, the movement disorder is the only one present. "More often other conditions are also associated, such as behavioral disorders including autism, cognitive retardation, epilepsy, sensory problems with even major defects of sight and hearing, bone and joint disorders, eating disorders with difficulty in chewing, swallowing or digestion, incontinence, breathing difficulties, sleep disturbances, mouth or teeth problems ".
Read also: How to explain disability to children
"The causes of neurological damage can be numerous" explains De Polo.
"A frequent cause is the severe prematurity, i.e. birth before 28-30 weeks of pregnancy, especially if associated with a low weight of the baby. But the condition could also depend on infections perhaps asymptomatic during life in utero, from trauma to the fetus during pregnancy, or from genetic predispositions which make the baby vulnerable to a particular stress, such as giving birth a little more difficult than normal.
And another possible cause isasphyxiation which can occur during childbirth, in the presence of serious complications of childbirth ".Read also: Premature babies: what are the health consequences?
After birth and within the first two years of life Possible causes of cerebral palsy are infections such as encephalitis or meningitis or trauma (serious falls, car accidents). Damage caused by bleeding can also occur before and after birth, as in the case of ictus.
"After two years of age, trauma, infection or stroke can give rise to conditions similar to those of infantile cerebral palsy, but technically we leave this definition" explains De Polo.
How frequent is it
"The available data show that infantile cerebral palsy affects Europe at the European level one child for every 500 live births"says the specialist, underlining that it is therefore a rather frequent condition." In Del Paese it is estimated that there are at least 50-60 thousand people, including adults, suffering from cerebral palsy ".
How is the diagnosis made
The diagnosis is essentially based on the clinical manifestations, which, however, could be rather nuanced at first. "The fact is that the motor and sensory skills of the newborn are not yet fully developed, so some particular aspects may not be easily grasped in the first weeks of life "says De Polo.Read also:
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"In recent years, however, a great deal of work has been done to identify early signs of changes in the spontaneous movements of the newborn, which could predict an evolution towards some form of cerebral palsy. "Again from the point of view that the sooner the problem is recognized, the sooner one intervenes the better (in the sense that there are greater chances of recovery and rehabilitation), exactly as happens for autism.
There are a few however risk factors that they must invite doctors to monitor the development of the child closely, to see how things are going. "Among these, certainly severe prematurity and neonatal asphyxia. In these cases, the risk increases further if tests carried out in the first days to assess the situation, such as brain ultrasound e brain magnetic resonance, indicate that brain injuries are present. "
Infantile cerebral palsy: the early signs to keep under control
When it comes to starting to move, crawl, walk - we know - every child has his own times. It is true, however, that there are common stages of development, and some delays or anomalies in reaching these stages may indicate that something is wrong. Attention: this is not always the case. Maybe what looks like an anomaly is normal variability and there's nothing to worry about. But if not, don't waste too much time.
Here are some situations or characteristics that are worth bringing to the attention of the pediatrician, as indicated by the Centers for Disease Control in Atlanta, United States.
For a baby under six months:
- head that even as the weeks go by it constantly falls back when picked up;
- muscle stiffness;
- "floppy" attitude;
- hyperextension of the back and arms when picked up, as if pushing the one taking it away;
- legs that remain stiff and scissor cross when picked up.
For a baby between six and 10 months
- it does not roll;
- does not join hands;
- cannot bring his hands to his mouth;
- use only one hand, keeping the other closed in a fist.
For a baby over 10 months
- crawls asymmetrically, pushing with one hand and leg and dragging opposite hand and leg;
- it moves only on the butt or on the knees, never crawling "on all fours".
Treatments and therapies: how to intervene
First of all, it must be emphasized that there is no definitive cure of cerebral palsy: they exist however numerous treatments which can help the child improve their skills. Treatments differ from child to child, as are the different forms of paralysis that may be present. "Furthermore - adds De Polo - the intervention model can also vary according to how the services are organized in the area, the means they have available, the training of professionals who take charge of the overall management of children".
Another aspect that De Polo emphasizes is the importance of one adequate communication to families especially in the first moments after diagnosis, and possibly a psychological accompaniment. "We are talking about increasingly young children, given that today we work a lot to anticipate the diagnosis, and of families who are intercepted in a moment of fragility and disorientation. This is why it is very important to act delicately".
Since the alteration of posture and movement is the main symptom of infantile cerebral palsy, central to the care approach is the rehabilitation with physiotherapy: "A treatment that today has also greatly refined the relationship with parents" comments the specialist. "Especially if the children are very young, it is good that at least one is present, also to encourage the sharing of information which can be useful for the therapist and 'bring home' activities to be repeated in different contexts. "Especially if started very early, today physiotherapy allows to obtain important results.
As the child grows and according to his needs, other professional figures may also enter the field, such as neuropsychomotricist, speech therapist (for any speech disorders but also chewing and swallowing), psychologist. In short, the approach is generally multiprofessionale.
Sometimes they may be needed too drugs, for example for help relax contracted muscles (injections of botulinum toxin or baclofen drug) or check for seizures. Other times they may be indicated surgeries, Both orthopedic surgery, to correct anomalies that alter posture or involve pain or allow the acquisition of new motor functions, both of neurosurgery, for the resection of nerves connected to the muscles affected by spasticity.
For many children with cerebral palsy they are needed devices to promote movement and autonomy (wheelchairs, walkers, braces, etc.), but other devices such as programs or apps for augmentative alternative communication, speech synthesizers, hearing aids.
And some particularly innovative devices can be used in rehabilitation, especially in advanced centers. "For example robotic devices that function as exoskeletons for both the upper and lower limbs, to accompany the child to learn a movement that is as physiological as possible "explains De Polo." Or tools and environments of virtual reality, always to optimize the learning of the correct motor pattern ".
In many cases, interventions accompany the patient throughout his life, but this is not always the case: in milder situations it is often not needed. In any case, it does not mean that everything has to be done forever. "Let's take rehabilitation: as long as there is the possibility of improving the interaction of the child or adult with his daily environment, it is done, but if he has already reached the top and no other improvements are possible, it is interrupted. , perhaps passing from continuous interventions to interventions in cycles ".
Alternative medicine and research perspectives
As is often the case when faced with serious conditions without a definitive cure, the temptation to turn to unofficial treatments - from herbal supplements to particular forms of electrical stimulation - often proposed as revolutionary and decisive is strong. But beware: if they are not official there is a reason, and it is generally the fact that there is no evidence that they work or even that they are really safe.
In recent years, moreover, we often hear about possible treatments based on stamina cells (also from umbilical cord), with the idea that these cells can repair nerve and brain damage. As a document from the National Institute for Neurological Disorders and Stroke in the United States recalls, however, we are still in one very early stage of research: many studies and experiments are still needed - therefore many years - to prove that this approach can be truly safe and effective.
How children with infantile cerebral palsy live
Watch also the video on the stories of the association La Nostra Famiglia
Of course, because a child with infantile cerebral palsy is able to fully express their potential ea living a full and as peaceful life as possible requires the fulfillment of many conditions:
- the presence in the territory of efficient services, which can guarantee an adequate number of interventions in step with the times (and research results);
- il logistical support at school, with support teachers and educators;
- il support of the whole society, which for example also allows children with motor disabilities to access playgrounds, sports activities, summer camps and so on. Something by no means obvious, on the contrary.
Also for this reason, the main message launched by the awareness campaign of the first World Day of Infantile Cerebral Palsy, celebrated in October 2022, focused on the importance of quality of life all-round for the child and for his family in general. "Because a good quality of life for parents is a necessary condition for that of affected children" strongly underlines De Polo, scientific director of the Del Paesena awareness campaign.
The point is that, as the World Health Organization reminds us and as the scientific literature repeats, children and young people with disabilities should not only be seen as carriers of a health problem. For this reason, some experts have identified six key words that identify the broader context in which children and young people with cerebral palsy must be immersed. Here they are:
- operation: "Because everyone of us needs to have experiences of active functioning in the community, for example by going to school and being with classmates and teachers" comments De Polo.
- Family: "Parents must be involved in every therapeutic activity and path, also because they are the first and most profound connoisseurs of their child".
- Fun: "For a child it is not an option, it is a necessity. Rehabilitation activities must also be proposed in a playful way, so that they are welcomed with enthusiasm and participation. Otherwise they are of little use".
- Friendship: "A childhood and adolescence without friends are deprived experiences. And where it is not easy for friendships to start spontaneously, they must be encouraged, with events, initiatives and activities that facilitate interaction between typically developing children and children with disabilities".
- Fitness: "The improvement of motor functions certainly passes through rehabilitation, but not only. It can and should also go through recreational and sports activities. Without forgetting the importance of a healthy and balanced diet".
- Future: "We must always have a perspective vision, which looks ahead. Not only to imagine negative scenarios, as often happens, but also to imagine how beautiful and meaningful these children can live, even if in serious conditions".
Sources for this article: consultancy by Gianni De Polo; educational material from the US National Institute for Neurological Disorders and Stroke; information material from the American Centers for Disease Control.
Infantile cerebral palsy: the testimony
Infantile cerebral palsy hasn't stopped our little Kenya eitherWe are Arianna and Roberto, parents from Kenya, born premature at only 28 weeks of gestation. A beginning that is not exactly easy for anyone ... As the days went by we understood what it meant to be the parents of a child, not only born preterm, but also suffering from what is called CP, or infantile cerebral palsy. Kenya, despite infantile cerebral palsy, today is still a serene, joyful, vital and intelligent child.
- cognitive retardation
- behavior disorders
- physical disability