"Ever since I learned about the existence of Down syndrome, I have been searching for a star that certainly belongs to its discoverer, the English doctor John Langdon Down. I am trying to find out where he looks at the world from, where he probably watches our earthly bustle. I think that if he is displeased with our actions, he will send us one of his children from the planet DS as an ambassador. This is so that we can be kinder, more kind, more tolerant towards each other and so that we can appreciate life as we have it, with its mistakes."
This is an excerpt from the book Children from Planet DS, written by Olga Strusková. I first held the book in my hands while studying physiotherapy. It was as if I had a feeling that these children would accompany me in my profession as a physiotherapist.
Already during the first months of work in Children's Rehabilitation Hospital Vesna I started having children in Janské Lázně Down syndrome notice. When you walk around the treatment room, a child often pulls your shirt or unexpectedly hugs you – and often it is a child with DS. And you have a smile on your face and you know that they are there for us and we are there for them. I often asked myself how much targeted physiotherapy can be beneficial for them? Is there a clear rehabilitation procedure that would be most suitable for them? And when should rehabilitation actually start for these children?
Therefore, I became more interested in how rehabilitation for children with DS proceeds, what its specifics are, and what it is appropriate to focus on. In the following lines, I would like to share with you the information and experiences I have gained.
Physiotherapy
Physiotherapy is a comprehensive medical field focused on the prevention, diagnosis and treatment of musculoskeletal disorders. Physiotherapy is studied at a university, most often at the medical faculty of a given university. A physiotherapist therefore has knowledge in the fields of anatomy, physiology, orthopedics or neurology. A physiotherapist can significantly help children with DS with the development of psychomotor development, with the prevention of the development of orthopedic complications and, in cooperation with an occupational therapist, with the selection of appropriate aids for the development of these children.
Anatomy and neurology
In children with DS, pathology (deviation from natural development) in movement occurs in both the control and executive components. The control component is the brain and the executive component is the musculoskeletal system. At the level of the central nervous system, central hypotonia, i.e. reduced muscle tone, is described (see article in PLUS 21 issue 2/2020 on this topic). This phenomenon is genetically determined. On magnetic resonance imaging, morphological changes are visible in the brainstem, cerebellum, hippocampus and corpus callosum. The hippocampus is a part of the cerebrum that plays a major role in short-term information storage and spatial orientation. Typical are myelinization disorders (myelin is a protein that is one of the basic components of the white matter of the brain and spinal cord; its existence and proper distribution (myelination) is a necessary condition for proper brain functioning), motor learning disorders and the resulting delayed onset of postural reactions (or uprighting). There is insufficient muscle contraction, inadequate balance reactions and a disruption in proprioceptive feedback for posture and movement (proprioception is a special sense, the interplay of several organs and cells in our body that helps us perceive the body within space and move within it; it tells us where our body ends, for example, how to comfortably sit on a hard chair, how to sit in a soft chair, what force to exert to lift a certain object in proportion to its estimated weight, how far to stretch our arm to reach where we need to, how to balance the body so as not to fall to one side or the other). Within the musculoskeletal system, joint hypermobility and ligament laxity are described, the cause of which is a different composition of collagen.
For these reasons, children with DS experience delayed psychomotor development.
Joint instability is also typical. In the early stages of development, we can therefore notice certain typical signs, such as abnormal sleeping positions (for example, frog-like sleeping), in Anglo-Saxon literature these children are referred to as "floppy baby". Therefore, positioning is appropriate. For example, positioning rollers filled with balls can be used during sleep so that the child is not in a position where the joints are in abnormal positions, which unnecessarily irritates the joint capsule and leads to pain. During the day, it is appropriate to monitor these positions and adjust them if necessary.
Specifics of movement therapy
Physiotherapy for children with DS has its own specifics and varies according to age. In the early stages of development, we aim to provide maximum support for psychomotor development and to influence low muscle tone. For this, we use therapy based on neurophysiology (reflex locomotion according to Prof. Vojta, Bobath concept). To support increased muscle tone, we can use magnetotherapy and balneotherapy (whirlpool bath).
In preschool children, we can notice eye-hand coordination disorders and undefined laterality. In therapy, we therefore focus on training optical motor control and the correct timing of reactions. We use sensorimotor elements and unstable surfaces. The aim of therapy is to influence the deficit of postural stability and dynamic balance. In practice, it follows that these children have a deficit of deep and surface sensation. This means that the brain of these children has difficulty processing sensations from the skin (this is surface sensation) and from the joints (this is deep sensation). It is therefore appropriate to include ideomotor and body schema training in therapy, when the child learns to recognize his or her body. In the form of play, he or she can imagine that he or she has his or her own plush toy and that it will make a certain movement - and the child will repeat it. It is therefore appropriate to imagine a certain movement (imagination of movement and exercise in imagination). Vibrations and other facilitation techniques are used to influence proprioception.
Physiotherapy for school-age children focuses on the prevention of orthopedic complications. Therapy is always preceded by a detailed examination, when the goals of therapy are determined and a short-term and long-term rehabilitation plan is established on this basis. With the start of school, it is also appropriate to address the correct ergonomics of sitting. It is also appropriate to supplement fitness training (walking in the field, swimming, etc.) as a prevention of obesity.
It is best to start physiotherapy immediately after birth, because all children with DS are at risk of uneven psychomotor development due to hypotonia.
Fig. 2 Three-month position from the psychomotor development of a child for practicing the correct activation and engagement of the diaphragm and abdominal muscles. In the photo Hanička with physiotherapist Mgr. Lucie Mohylová. Photo archive of the author.
Orthopedic complications
Targeted rehabilitation significantly reduces the development of orthopedic complications, which occur more frequently in children with DS than in the general population. For example, children with DS may develop scoliosis. The occurrence of flat feet (pedes plani). Here, cooperation with a podiatrist (a foot specialist) and an orthotist (an orthopedic footwear specialist) is appropriate. Walking on uneven terrain is appropriate. In our clinic, scoliosis therapy is treated individually based on a detailed examination by a physiotherapist. Subsequent therapy mainly includes respiratory physiotherapy (respiratory physiotherapy is a set of examination and therapeutic techniques that focus on the patient's breathing) and active exercises of the deep stabilization system with proper activation of the diaphragm, which, in addition to its respiratory function, also has a postural function (it helps with posture).
The basis for success is an individual approach and the involvement of the entire multidisciplinary team, which consists of a doctor, speech therapist, occupational therapist, physiotherapist, psychologist and social worker.
During therapy, we sometimes encounter certain limits. These can be obesity, attention deficit disorder, mental retardation, reluctance to learn new things and clinging to old things. The motivation of the little patient and a suitable therapeutic environment are important. It is also possible to use snoezelen for therapy, thanks to which the child calms down and concentrates better.
snoezelen
snoezelen is a therapy that activates the senses in a specially equipped room. In therapy, we use the latest findings on brain neuroplasticity. The goal of therapy is to stimulate the senses (sight, hearing, touch, smell, taste, proprioception) and integrate sensory perception. The senses are stimulated with regard to all components of the personality (biological, psychological, social and mental).
Use of robotic-assisted rehabilitation
Robotic rehabilitation is a relatively new field of physiotherapy that offers great possibilities. At DL Vesna we work with the system Bimeo Pro and Meditutor. Bimeo Pro therapy is based on biofeedback and optimizes the motor, sensory and cognitive abilities of the little patient. The advanced rehabilitation software contains a variety of motivational feedback game tasks that motivate the child to coordinated movement
Fig. 3 Hanička during therapy on the Bimeo Pro system. During therapy, the patient has chips on his hand that detect the position of the upper limb. The child watches the movements made on the board on the screen. This way, he learns to engage the unused or non-dominant limb. Photo archive of the author.
Parents should be informed about a suitable rehabilitation plan by a rehabilitation doctor. Rehabilitation can be completed both on an outpatient basis and in an inpatient setting. Janske Lazne or in specialized medical institute (OLÚ).
The DL Vesna medical rehabilitation team looks forward to seeing you.
May our hearts be open, may we continue to study and seek new paths in therapy, may we be able to look at the world through the eyes of children with DS.
Pavla Brandová (35 years old) graduated in physiotherapy at Masaryk University in Brno. She has three children. She lives in Adršpach and in her free time she likes to go rock climbing, spend time with her family or relax at the piano. She currently works at the Vesna Children's Rehabilitation Hospital in Janské Lázně, where she is engaged in robotic rehabilitation of children, in which she also meets children with DS.
