Therapies and Support for Infants

Physiotherapy

Speech therapy helps:

Growing mobility also characterises the infant phase of Prader-Willi Syndrome. A toddler with PWS begins to discover the world with its whole body. Crawling, turning, pulling itself up into a standing position, slowly placing one foot in front of the other until it finally walks freely – trying all the options in order to increase its sphere of action. Physiotherapy can provide support depending on the child’s stage of development. The development of balance and coordination and the promotion of movement and creativity are the focus of the efforts to improve the coarse and fine motor skills of a muscularly weak child. Symmetrical movement patterns are just as important as physiological foot pressure and upright trunk posture.

Possible physiotherapeutic forms of therapy, individually adapted to the child and its goals:

to understand what others are saying
to learn non-linguistic interaction and gestures that can be understood by everyone
to express one’s thoughts, feelings, wishes and needs
to produce speech sounds and improve articulation, sentence length and grammar
to control the speed, rhythm, intonation and volume of speech and the flow of breath
to practise linguistic and social interaction (eye contact, opening and continuation of conversations, or adoption of conversations)

Physiotherapy

Possible physiotherapeutic forms of therapy, individually adapted to the child and its goals:

Speech therapy helps:

to understand what others are saying
to learn non-linguistic interaction and gestures that can be understood by everyone
to express one’s thoughts, feelings, wishes and needs
to produce speech sounds and improve articulation, sentence length and grammar
to control the speed, rhythm, intonation and volume of speech and the flow of breath
to practise linguistic and social interaction (eye contact, opening and continuation of conversations, or adoption of conversations)

Three-dimensional manual foot therapy according to Barbara Zukunft-Huber

The German physiotherapist Barbara Zukunft-Huber developed this foot therapy, which is based on the normal foot development of the child in the first year of life. The therapy is very often used when children with PWS are able to stand but show deviations of the foot axes (e.g. with pigeon toes, splay and flat feet). Early treatment prevents the possible use of orthopaedic insoles or splints.

Psychomotorics

In psychomotorics, the focus is on the self-acting action of the individual and the perception of one’s own experience in the foreground. Targeted play and movement exercises should promote this. Psychomotorics sees the development of every human being as a lifelong process. Mototherapy, which has its origins in psychomotorics, especially treats people with obesity and ADHD. Psychomotor skills are often used in groups with different children from the age of 3 upwards. It can replace physiotherapeutic and occupational therapy measures in children with PWS.

Occupational therapy according to the Bobath concept

The aim of an occupational therapist is to support people whose ability to act is limited or threatened by restrictions in such a way that they can maintain their independence and organise themselves and their everyday life. This is practised through movement experiences. In therapy, physiological movement sequences are initiated which the patient can efficiently coordinate over time and use in a targeted manner. The greatest possible autonomy in action is an essential goal of occupational therapy.

What can you do at home?

Give your toddler small tasks to carry out so that it can test its independence. Encourage young children, for example, to dress themselves, wash their faces and hands, and clean their plates from the table. Encourage activity. Make regular physical exercise, for example in the form of movement games, a natural part of your everyday family life, because this is the only way to prevent the lack of desire to move which is typical of PWS. Physical activity improves muscle tone, supports weight control and generally promotes motor development.

Speech therapy

Delayed speech development is normal in children with PWS, but it varies. It is important to lay the first foundation stone for the successful development of language at an early age by promoting oral motor skills. Sucking, swallowing, chewing and babbling is an important step in this direction. But it is not only difficulties with the movements of the mouth that can affect the development of speech. A high palate or reduced salivation can also have a decisive influence on this. Speech therapists and occupational therapists can help with communication disorders in the verbal and non-verbal area and with delayed and disturbed speech development, which can have various characteristics in PWS:

Disturbance of the ability to articulate due to weak muscle tone and little control over the mouth muscles (lips, tongue, soft palate)
Resonance problems despite muscle coordination
Nasal language, possibly due to weak or uncoordinated movements of the soft palate. Movements for sound formation are weak, unclear and poorly coordinated. (“Dysarthria” (speech disorder due to a speech muscle disorder))
Disturbance in the planning of articulation movements of the mouth. The children do not know what their muscles have to do to produce certain sounds or sound sequences. Characteristic features are a limited sound repertoire, slurred speech, frequent omission of sounds and syllables, difficulties in imitating sounds, problems finding words and uncertainty in expression. Children often use sign language as a means of communication. (“glosso-labial dyspraxia” – limited or missing ability to execute precise arbitrary movements of tongue and lip (compared to cf. Pschyrembel))
Imbalanced language profile – language comprehension is very advanced compared to one’s own ability to express oneself. Difficulties in forming consonant sequences and finding words.