Therapies and support for infants
In the maternity clinic, the parents are already assisted by midwives and physiotherapists to mobilise the hypotonic newborn. In addition, the municipal early intervention centres and the socio-paediatric centres at the local children’s clinics offer extensive assistance ranging from diagnostics and curative education to advice and guidance for parents. Your paediatrician will also support you in choosing a suitable form of therapy. Try to find out if he or she has experience in treating children with PWS.
There is no shortcut when it comes to the physiotherapeutic treatment of people with PWS. Each person is different, so children with PWS are also individually very different. Therefore, with professional help, it is necessary to look closely at which areas the child needs support in and which of the therapy forms mentioned make most sense for that child.
Develop short– and long-term therapy goals together with the experts. What stage is my child supposed to be at in six weeks? What should it be able to do within six months?
Physiotherapy in infants with PWS is primarily aimed at securing and facilitating food intake. This is achieved by integrating the sucking and swallowing reflexes, especially in the gastric tube weaning phase. Special attention is paid to mouth closure and nasal breathing to slowly increase the amount that the child can drink. The physiotherapists also guide the parents in dealing with their hypotonic infant, e.g. carrying, holding, transporting.
In order to support their weakly muscled infant with PWS physiotherapeutically, parents can choose from a number of different types of therapy, e.g.:
The Czech paediatric neurologist Prof. Dr. Václav Vojta developed this type of therapy, which is based on the assumption that everyone has innate ideal movement patterns, but cannot always use them. This is especially the case for disabled people. These blocked movement sequences are activated and triggered by stimulation of the brain and by special pressure points on the body. This is done according to the principle of so-called reflex locomotion.
The holistic Bobath treatment concept was developed by the couple Dr. h. c. Berta Bobath (physiotherapist) and Dr. Karel Bobath (neurologist and psychiatrist) and is used in physiotherapy, occupational therapy and speech therapy. It assumes that healthy regions of the brain and the central nervous system can take over the tasks of sick or impaired brain areas. On the basis of the individual physical biomechanical possibilities of the respective person, movement strategies are developed together with the patient, initiated through constant repetition and practically re-trained. The Bobath concept is a fun therapy for a child with PWS. It stimulates individual activity and promotes joy of movement. In speech therapy, the Bobath concept is used to improve movements and functions in and around the area of the mouth and face.
Orofacial regulation therapy according to Castillo Morales
The orofacial regulation therapy (orofacial = concerning the mouth and the face) developed by the Argentine therapist Castillo Morales is a treatment concept used especially for nutritional disorders and mouth motor dysfunctions. In the case of infants, these are usually problems with sucking and swallowing and mouth closure. The aim of the treatment is to establish the interplay and balance between the different areas of the face and mouth and harmonise them with the other organ functions.
Supplementary therapy methods (applied as short-term treatment)
Manual therapy is used for blockages in individual joints. These blockages cause pain and restrict movement. This is where manual therapy comes in and releases the blockage to restore normal movement and strengthen the muscles.
Osteopathy / Craniosacral Therapy
Osteopathy is a holistic manual therapy and takes into account complaints felt in the whole body. With his or her hands, the therapist tries to feel and correct blockages and misalignments.
Cranio-sacral therapy (Latin: cranium: the skull; sacral: the sacrum (os sacrum)) was developed from osteopathy. It concentrates on the areas of the skull and spine with special movements and gentle touches.
Physiotherapists believe that Vojta therapy for children with PWS is ideal for promoting their development up to independent verticalisation (independent sitting/standing). Vojta activates complex movement patterns which have a tonus-regulating effect (muscle tension regulation) on the entire musculoskeletal system, including the sucking and swallowing muscles. An example of a contraindication for Vojta therapy is a severe heart defect. Vojta therapy is learned by the parents and carried out 2 – 4 times daily with the child at home.
For infants with PWS and feeding disorders, Orofacial Regulation Therapy according to Castillo Morales and treatment according to the Bobath concept are also possible and useful.
Growth hormone therapy
The administration of growth hormones beginning from infancy, but at the latest from the age of 2 until the end of growth, has proved to be a successful treatment method for people with PWS in recent years and decisively changed their life. In the past, people with PWS were usually small and very overweight when they lacked nutritional control. Today, they are able to grow through growth hormone therapy, though they do not reach family-typical sizes. Hormone treatment reduces the fat mass. The muscle mass increases and the children become more active and mobile in the first weeks after the beginning of the therapy. Strength and endurance improve.
However, the intake of energy must not be increased and nutritional control must be maintained in order to maintain body weight. Hormone supplementation does not change the lack of a feeling of satiety either.
Growth hormones are injected daily into the skin with a pen until the end of the growth phase. Experienced specialists guide the parents so that they can take over administering the injection themselves. Later, the child can usually inject the hormones itself.