Center for comprehensive care for children with developmental disorders and their families

That is why we create an individual program of therapeutic and rehabilitation care for children and their families, taking into account the type of their disability and the associated needs. We take care of children for a long time. We are looking for opportunities for additional health care, social assistance, mainly at the University Hospital in Motol and also at the child's place of residence. We support these children in securing social and health care needs and in integrating into schools and society in general.

We work on an outpatient basis within the programs here.

socio - pediatric counseling

focuses on providing assistance and professional care to children with disabilities or their parents. Parents with children aged 0 to 18 can be booked at the counseling center. In the clinic, the pediatrician, based on the anamnesis, proposes further examination, involves professional examinations, rehabilitation, and coordinates further care. Based on diagnostics, we create an individual program for individual children according to the issue of disability and related needs. We take care of children for a long time. We are looking for opportunities for further assistance, mainly at the University Hospital in Motol and also at the child's place of residence. We support these children and their families in securing social and health care entitlements and in integrating them into the education system and society in general.

multidisciplinary care center for children with perinatal burden.  

This is a project created in 2015 and supported by a grant from Norway - Norwegian Funds. The project is created for children who were born at the University Hospital in Motol and their health status after birth requires further professional monitoring. This is based on professional outpatient departments cooperating within the project. Individual experts are involved in the care of children with a diagnosis of prematurity or otherwise critically ill newborns, resp. infants in the outpatient department. They provide specialized care and monitoring of the health and development of these children. The project involves physicians of the Center for Comprehensive Care for Children with Developmental Disorders Clinic of the Pediatric Clinic, the Department of Neonatology, and physiotherapists of the Department of Rehabilitation Medicine. Other experts also participate in monitoring the health status of some children - pulmonologist, gastroenterologist, ophthalmologist and neurologist, psychologist. Children with more serious problems (birth defects, delayed development, etc.) are transferred to care within the first program at the age of one             

 The head of the workplace is MD M. Kašparová (telephone connection: 224 433 790, 791)

 Ambulance - is located in pavilion No. 15 in an older building above the southern gatehouse 

Office hours:

Since 1995, participation in foreign internships at children's center-type workplaces in the USA, England and Germany.
Participation in conferences, seminars and trainings in the field of care for children with disabilities abroad, repeatedly active participation in Czech pediatric congresses.
Principal Investigator of Grants - IGA 9537,1995, 1997 -3965, IGA NE 3-2001, 2003-XNUMX
Authorship of a number of articles, lectures.

1st seminar  

  professional seminar on the topic

MULTIDISCIPLINARY CARE AS A WAY TO MONITORING CHILDREN WITH PERINATAL BURDEN

MOTOL University Hospital, 2nd floor, headquarters, V Úvalu 84, 150 06 Prague 5

Projects  

"Multidisciplinary care center for children with perinatal burden"

is supported by a grant from Norway

On January 20.1.2016, 84, a seminar was organized within the project - Part XNUMX on the topic "Multidisciplinary care as a way of monitoring children with perinatal burden". A total of XNUMX candidates from the ranks of general practitioners for children and adolescents, pediatricians, pediatric and general nurses, psychologists and others registered to participate. The event was successful. We enclose abstracts of lectures and several pictures from the event

Neonatology of the 21st century

Prim. MUDr. Miloš Černý, Department of Neonatology with JIRP, Department of Gynecology and Obstetrics, 2nd Faculty of Medicine, Charles University and University Hospital in Motol,milos.cerny@fnmotol.cz

Over the last two decades, the quality of medical-preventive care for pregnant women, fetuses and newborns has increased significantly in developed countries. At this time, the emphasis on inducing pulmonary maturity of the fetus with corticosteroids has increased, and the surfactant has become a standard part of RDS treatment in immature infants. More gentle procedures of artificial lung ventilation are used, and controlled hypothermia has been introduced into the standards of treatment procedures for severely asphyxic newborns. In the Czech Republic, a system of perinatal and neonatal care was developed in the mid-90s, which systematically improved the care of immature newborns. Twelve perinatology centers were established, into which high-risk pregnancies and impending preterm births before the 20nd century began to centralize. The result was a steady decline in neonatal mortality from 12prom. in 32 to below 5 per mille in 1995. The mortality of newborns with extremely low birth weight / below 1,3g / decreased, which is between 2014-1000%. Severe developmental disabilities occur in about 15% of surviving children. Currently, the nationwide infant mortality rates are among the best in the world. The proportion of premature newborns / births before the age of 16 gt) is still increasing, currently exceeding 20% of the neonatal population. Therefore, it is necessary to pay more attention to the multidisciplinary long-term monitoring of children in this risk group and to start early treatment if necessary.

Children with perinatal burden - multidisciplinary care as a basis for secondary and tertiary prevention

MUDr. Martina Kašparová, Center for Comprehensive Care of Children with Developmental Disorders and Their Families, Department of Pediatrics, 2nd Faculty of Medicine, Charles University and University Hospital in Motol, martina.kasparova@fnmotol.cz

By long-term monitoring of the health status, somatic and psychomotor development of children in the Center for Multidisciplinary Care for Children with Perinatal Stress, we create the basis for early diagnosis and therapy. 

Children are examined by experts - pediatricians and neonatologists, physiotherapists. Examinations make it possible to react in time to changes in health status and development and to start the necessary interventions in time. The primary counseling center is then followed by examinations of other experts involved in the project. The result is a comprehensive view of the issue of children with perinatal burden and the possibility of further care for these children. The paper gives a picture of the activities of the workplace and the whole project.

Indications for rehabilitation in the care of premature newborns    

MUDr. Jakub Tkaczyk, Department of Neonatology, Department of Gynecology and Obstetrics, 2nd Faculty of Medicine and University Hospital in Motol,  jakub.tkaczyk@fnmotol.cz  

Premature babies face the immaturity of their organ systems. This can lead to both temporary and long-term deviations in development. At the same time, they are exposed to the hospital environment and a greater risk of health complications. Properly used rehabilitation already during hospitalization or after discharge from the hospital can often help to overcome these deviations or at least alleviate their consequences.

Physiotherapy of children with perinatal load

PaedDr. Zounková Irena, PhD, Department of Rehabilitation and Sports Medicine, 2nd Medical Faculty, Charles University and University Hospital Motol, Prague,irena.zounkova@lfmotol.cuni.cz

The task of a physiotherapist in newborns with symptoms of immaturity is the prevention and treatment of pathokinesiological patterns with the aim of static and dynamic control of postural manifestations with an orientation on their motor skills up to the period of school integration. He uses reflex therapy procedures (methods of respiratory physiotherapy, selected models of reflex locomotion according to Vojta's principle and techniques of proprioceptive and tactile stimulation according to the Bobath concept).

Continuous and adequately managed physiotherapy has been an integral part of comprehensive therapy since the beginning of the treatment process. In order to prevent sensory integration disorders, it is important to continue therapy at least until (at) the start of school.

The paper provides an overview of physiotherapeutic interventions during the child's hospitalization and after his release to home care, as well as at preschool age.

Occupational therapy intervention in children with perinatal burden

Mgr. Petra Dvořáková - Department of Pediatric Rehabilitation and Sports Medicine 2LFUK and FN in Motol, petra.dvorak73@gmail.com

The occupational therapist uses the knowledge of the milestones of psychomotor development in children with perinatal load and determines therapeutic procedures and goals on the basis of the developmental level. The occupational therapist focuses mainly on the perception of body scheme, proprioception, postural and balance reactions, which subsequently determine the achieved level of motor, cognitive and communication skills.

• In children, HRA is the basic therapeutic tool.
• The main therapist is the child's FAMILY.
• The aim is to teach the child to live in normal living conditions.

The occupational therapist is part of a multidisciplinary team, where he works closely with a pediatrician, neurologist, physiotherapist, speech therapist, visual therapist, special pedagogue, psychologist. The paper will provide insight into the characteristics of patients with perinatal burden, its specific difficulties and occupational therapy interventions. 

On March 30.3.2016, 87, the II. part of the seminar on "Multidisciplinary care as a way of monitoring children with perinatal burden". A total of XNUMX candidates from the ranks of general practitioners for children and adolescents, pediatricians, pediatric and general nurses, psychologists and other specialists registered to participate. We enclose abstracts of lectures and several pictures from the event

Results of prevention of serious developmental disorders in children with perinatal burden in the Czech Republic

Petr Zoban, Neonatal Department. Department of Gynecology and Obstetrics, 2nd Medical Faculty, Charles University and University Hospital in Motol, Prague

Results of newborn care The Czech Republic has become one of the most developed countries in the world. Neonatal mortality (NU) dropped to an incredible 1.27 / 1000 live births, resp. in the category below 1000 g to 17% of all live births. It can be said that we have reached the maximum possible decrease in the emergency number. It is all the more urgent to focus on maintaining the quality of life of rescued, perinatally endangered children. The incidence of developmental disorders in children with perinatal burden in the first 24 months of life has been monitored in the Czech Republic since 1997, primarily in very and severely premature infants.

Monitoring of children with perinatal burden is part of the so-called pediatric follow-up care. Very young children with severe fetal growth, perinatal asphyxia or children of mothers with type 1 diabetes are monitored. The subject of attention of aftercare are developmental disabilities limiting self-sufficiency, resp. social application of disabled children. In 1995, the European Association of Perinatal Medicine recommended focusing on the prevention / maximal correction of severe DMO, psychomotor retardation, sensory impairments of sight and hearing, and concomitant well-being and growth disorders.

In the period from 2000 to 2012, the number of children with a birth weight below 1000 g with severe developmental disabilities in 24 months of corrected age was reduced from 31% to 18%, in the category 1000 - 1499 g from 13% to 8% and in children with birth weight 1500 - 2499 g to maintain the incidence of severe handicaps between 1.5 - 2% of all released children. Even in children with perinatal asphyxia, with a primarily very unfavorable "quoad vitam et sanationem" prognosis, the incidence of death and / or developmental damage was reduced from 29% to 15% (p = 0.025).

The achieved results show that in the last 12 years the Czech Republic has managed not only to maintain a significantly low emergency number, but also to increase the number of surviving perinatally endangered children without serious developmental disorders in early childhood.

Neonatal respiratory pathology in the follow-up care of a pediatric pneumologist

Petr Pohunek, Pediatric Pneumology, Department of Pediatrics, 2nd Medical Faculty, Charles University and University Hospital in Motol, Prague

Respiratory tract involvement is one of the major components of neonatal pathology that modern medicine encounters. Chronic lung disease of infancy (CLDI) is a very heterogeneous outcome, the shape of which is determined by a number of pathological processes arising in the prenatal and perinatal period. The degree of immaturity of the baby at birth has a significant share in the lungs, but mechanical ventilation, oxygen toxicity, infection, or barotrauma or meconium aspiration also contribute. The current level of neonatal intensive care allows the survival of children who could not survive before. Quality diagnosis and treatment of complications as well as the possibility of surfactant administration play an important role. These children often come to the home after months spent in intensive care units, often with inhaled anti-inflammatory medication. They develop persistent breathing problems in sleep, symptoms of bronchial hyperreactivity, tachypnea episodes and airway stability disorders. These children are monitored for a longer period of time in comprehensive care centers linked to the relevant specialized neonatology departments. In particular, neurological and developmental monitoring is provided, nutrition is monitored, and an individual vaccination plan is being prepared.

Long-term monitoring of lung pathologies and their consequences should be entrusted to a specialized outpatient clinic of a pediatric pneumologist after discharge from intensive care. He is responsible for monitoring the further development of the respiratory tract, lung function, sleep breathing and solving possible complications. Once the child is able to cooperate, regular monitoring of lung function should be instituted. The role of the pediatric pneumologist is also to manage pharmacotherapy and possible and gradual discontinuation of the medication with which the child left the neonatology department. In selected cases, bronchoscopic examination is also indicated to assess the stability of the airways and their patency. The pediatric pneumologist should address congenital malformations of the respiratory tract and coordinate any cooperation with the thoracic surgeon.

Newborn care with respiratory pathology is a multidisciplinary complex process in which a pediatric pneumologist should play a major role and coordinate interdisciplinary cooperation. He must have a great cooperation with the PLDD and especially with the child's parents. It should also be available to deal with any subsequent complications or more severe respiratory infections and to monitor the child until all symptoms and problems have disappeared completely. In many cases, such a child needs monitoring for years, sometimes pneumological lifelong monitoring.

Eating disorders of infants and toddlers

Jiří Bronský, Pediatric Gastroenterology, Department of Pediatrics, 2nd Faculty of Medicine, Charles University and University Hospital in Motol, Prague

Introduction: Based on current knowledge, it appears that taste preferences that are partially congenital or acquired in the first two years of life are likely to affect dietary choices, taste preferences, eating behavior, growth, and body weight later in adulthood. From this point of view, it is necessary to pay attention to the diet of children in this early period of development - not only in terms of nutritional needs, but also in terms of diet composition and proper eating habits. The child has an innate preference for certain types of taste, which can be changed by the child's subsequent experience. It depends on the way the parent feeds him, so the parent's orientation in this issue is important for the child.

Diagnostics: Eating disorders (PPP) can occur in 20-30% of children, but a serious problem that requires specialized care is only in a small group of children (approximately 1-5%). In some cases, an unjustified fear of a parent can trigger a vicious circle, where as a result of that fear the parent begins to feed the child in an unusual way, which can lead to the development or deterioration of PPP. The attending physician must decide whether the PPP is severe. A simple interview with the parent and examination of the child is used to determine the diagnosis, or it is possible to use some questionnaires or diagnostic criteria (eg Montreal scale, Chatoor criteria, DSM V, Wolfson criteria - etc.). Some specialist centers use video evaluation of the interaction specialist.

Therapy: PPP treatment depends on the severity of the disorder and the underlying cause. In most cases, general recommendations for proper feeding of the child will suffice. In more complex cases, it is necessary to precisely identify the cause and choose an individual procedure. The parent plays a crucial role in the whole process of learning to eat. Often it is his inappropriate way of offering food or inadequate response to the child's refusal to eat that is the cause or deterioration of PPP. At risk are parents who are unpredictable, disturbing, careful, depressed, or parents who suffer from PPP. According to the approach to the child, parents can be divided into 4 categories, of which only the responsive type has a risk-free approach to the development or deterioration of PPP.

Conclusion: PPPs in children (especially infants and toddlers) are relatively common, but in most of them it is a mild form of the problem. It is important to evaluate the child's well-being and determine the type and severity of the disorder from which treatment is based. Most cases are resolved by respecting general rational feeding advice, parents' patience and their correct parental approach. Some children (especially where the difficulties are due to an organic disease or severe mental disorder) require specialized multidisciplinary care.

Comprehensive ophthalmological care for premature babies  "or the end of good all good" 

Jiří Malec, Center for Comprehensive Child Care with ROP, Department of Ophthalmology for Children and Adults, 2nd Medical Faculty, Charles University and University Hospital in Motol, Prague

The care of premature newborns falls within the scope of many medical disciplines. Ophthalmology is one of them. In premature newborns, the development of vision and anatomical conditions is affected by the premature birth of a child. The functional maturation of their organ systems to the level of full-term children takes various lengths of time. Premature babies very often have various eye defects associated with visual immaturity. Between

Serious retinal eye defects include retinopathy of prematurity (ROP). Let us also mention astigmatism, refractive errors, amblyopia, central visual impairment, congenital cataracts, nystagmus and strabismus. The impossibility of visual perception or its impairment has a significant impact on the child's development.

Comprehensive ophthalmological care for premature babies must cover the full range of possible visual organ disorders and ensure continuity of monitoring of premature babies from birth to stabilization. An integral part is also cooperation with other medical disciplines. 

Importance and pitfalls of hearing screening in children with perinatal burden 

Jaroslav Valvoda, Department of Nasal Ear and Throat, 2nd Medical Faculty, Charles University and University Hospital in Motol. Prague  

The introduction of otoacoustic emissions soon after their discovery by DT Kemp in 1978 in neonatal hearing screening was accompanied by an optimistic view of easy and timely detection of hearing defects at the earliest age of the child with the possibility of effective intervention in the first half of life. As up to 50% of congenital hearing impairments are not detected by screening at-risk newborns, a requirement has been made to screen all newborns. Unfortunately, regardless of the different legislative framework, nationwide hearing screening worldwide lags behind in its effectiveness behind screening for metabolic defects. One of the reasons is the limits of the screening tools themselves, ie otoacoustic emissions and AABR (automatic BERA), especially when they are used in rescreening, which is the biggest weakness of screening. In addition, positive otoacoustic emissions do not completely rule out serious hearing damage (auditory neuropathy, etc.). The author further analyzes the results of hearing screening and rescreening in children with perinatal load at the Motol University Hospital in 2015 and describes the procedures of complete audiological hearing evaluation at the FNM, which usually provides perfect diagnostic outputs but has limited capacity for understandable reasons.    

Preliminary results of examination of psychomotor development in the 2nd and 5th year of age of children with perinatal load

MUDr. Martina Kašparová, Center for Comprehensive Care of Children with Developmental Disorders and Their Families, Department of Pediatrics, 2nd Faculty of Medicine, Charles University and University Hospital in Motol, PhDr. Jaroslava Fabikova, PhDr. Ladislava Doležalová, Department of Clinical Psychology, University Hospital in Motol

When examining children with perinatal stress at the age of 2 and 5, we also monitor the psychomotor development of these children. At the age of 2, we evaluate the development according to the Bayley III scale, exceptionally with the Munich Developmental Diagnostics for the 2nd-3rd year of age, at the age of 5 the psychologist examines the children with a psychological examination (PDW test and Raven) and performs a school maturity test. The preliminary evaluation shows us quite favorable examination results in children who did not have any serious complications of their health during the perinatal period and who do not show any associated diseases.

At 2 and 5 years of age, we find in 83% / 96% of children with a pH below 1500 g a psychomotor development at a level corresponding to the age of the child. At 5 years, however, only 58% of children passed the school maturity test, 24% of children have signs of attention deficit disorder and 37,5% have delayed graphomotor skills and 24% have delayed sensorimotor skills. More detailed information is contained in the communication.