Common complaints
Experiencing an infection can be mild. Therefore, it is particularly important to consider the combination of the infection and the persistent symptoms. The World Health Organization (WHO) has developed a specific definition of Long COVID for children and adolescents, because COVID-19 affects them differently than adults.
Children and adolescents often experience multiple complaints: mood symptoms (sad, tense, angry, anxious, depressed), extreme fatigue, sleep problems, headaches, tightness in the chest and/or shortness of breath, nasal congestion, dizziness, and palpitations. Cognitive dysfunctions (confusion, concentration problems, hypersensitivity, and memory complaints) and post-exertional malaise (PEM : the worsening of symptoms that occurs after all forms of exertion – physical, cognitive, social, and psychological) also occur. ** (see the image below for an overview of the complaints) . Subjecting these children to stress despite these symptoms could potentially cause irreparable damage. There are also children with post-COVID who do not improve or are not capable of carrying out stress.
Children and young people with Long COVID are often unable to fully participate in school, sports, do something fun with friends, or go to a party. The extreme fatigue and/or stimulus processing makes this difficult.
Young people and Long COVID
The group of young people who still experience symptoms after three months is large. Based on data from the UK ONS study, this translates in the Netherlands to over 15.000 children aged 2 to 16 who experience limitations due to Long COVID for longer than three months – ranging from light, mild, and severe – and over 20.000 aged 17 to 24. They may continue to experience severe symptoms after a mild course of the illness, such as concentration and memory problems, shortness of breath, and fatigue. Particularly among students, such symptoms can hinder learning and study progress. *** For young people pursuing MBO , HBO , or WO education, it is important to report study delays to the educational institution as soon as possible. This allows for an investigation, together with the study counselor and/or dean, into how the study delay can be limited or delayed. For example, study programs often offer the possibility to adjust timetables, schedules, and exam dates if a young person experiences problems.
Mental health issues and stress
Long-lasting complaints can lead to increased mental health issues and stress in young people. Sometimes, young adults can benefit from support regarding the uncertainty and/or anxieties associated with their long-term physical complaints. For some, life has come to a complete standstill and there is little prospect of recovery, which also affects their future outlook. Suitable options for psychological and social support are also available for young people through the digital Hulpwegwijzer developed by C-support.
Work and Income
There are also young people who already live independently and, due to health problems, have less or no work and consequently less or no income. Not all young people are entitled to supplementary benefits, such as unemployment benefits or social assistance benefits. Only a select few qualify for a Wajong benefit. In addition to potential mental effects, this also entails financial problems that affect their housing options. As a result, some young people move back in with their parents. These young people can turn to neighborhood teams and/or the municipality for help.
What does C-support do?
Children and young people, together with their parents, can turn to C-support for individual advice and answers to questions regarding health and psychosocial complaints. The aftercare advisor listens to the complaints experienced and the impact these have on physical and mental health. They discuss what is needed to make the complaints more bearable and possibly reduce them. If necessary, consultation takes place with one of our medical advisors.
Advice is also provided regarding potential treatments with care providers, such as occupational therapy, physiotherapy, speech therapy, or dietetics, taking into account the care and/or support already involved. The aftercare advisor shows the way and stands alongside the child or young person and their parent(s). Where necessary, we provide additional information to professionals such as a general practitioner, youth doctor, insurance doctor, occupational therapist, or physiotherapist, as well as the school, truancy officers, Safe Home (Veilig Thuis), or other involved service providers.
Education
Education is an important part of the development of children and young people. When a child or young person has Long COVID, it can have serious consequences for school time and cognitive and social emotional development of children.
Due to Long COVID-related symptoms, such as PEM , POTS (Postural Orthostatic Tachycardia Syndrome), or extreme fatigue and/or loss of concentration, it is sometimes not possible to attend (part of) education. Absenteeism can lead to an educational delay. Moreover, the capacity to cope can vary significantly from day to day. School absenteeism is therefore not always a sign of unwillingness or insufficient motivation, but can be a consequence of the condition.
In consultation with the internal supervisor or care coordinator, agreements can be made regarding care at school and the content of education, taking into account the capacity and limitations of the child or young person. The school doctor can also play a role in this, possibly together with a pediatric occupational therapist who can provide advice regarding capacity. Collaboration between a school doctor and a pediatric occupational therapist can truly make a difference for a young person.
It is therefore important for parents and the student to discuss appropriate education in primary or secondary education with the school and, if applicable, other involved experts. The MBO Appropriate Education Knowledge Centre provides MBO education institutions with information on organizing this.
Custom Made
For children/young people with Long COVID, it is important that they find a balance between effort and relaxation. By aligning education as closely as possible with the student's capabilities, recovery can be contributed to. Dosage of teaching material, lesson time, and/or teaching method and use of resources could contribute to this. Customization can be applied, taking into account the complaints, limitations and resilience of the child or young person and his or her (im)possibilities and those of the school. Examples include:
- to draw up a schedule in consultation with a pediatric occupational therapist;
- scheduling rest periods between lessons;
- working in a low-stimulus environment;
- the use of aids such as headphones in the classroom;
- distance learning, for example video calling or an AV1 robot
(also see Robot education for chronically ill children). - make agreements about the essential (core) subjects or really necessary tests to be taken;
- choice to choose creative subjects in case of lower cognitive load capacity;
- extra time for tests;
- make a profile choice quickly;
- take a spread exam;
- alternating practical and thinking subjects (cognitive load and physical load)
Gym classes and sports
Physical activity combined with social contact is important for the development of a child or young person. This can provide relaxation and contributes to their mood. However, physical exertion can be very taxing if a child or young person has Long COVID symptoms, and this does not benefit recovery. Conditions such as PEM and POTS are reasons why children are unable to participate in sports or gym classes.
It is important that the school and the gym teacher pay attention to this. Therefore, make clear agreements, depending on the load capacity, about what the child or young person does or does not participate in and whether an exemption is necessary. A gym teacher can also insert rest breaks in between, and only have the lessons followed partially. A (child) occupational therapist can advise on this. Also in regular sports, an adapted program can contribute to the possibility of still being able to 'participate'. Or if sports are not possible, to facilitate social contact before or after training, or in another way. This allows the child or young person to at least keep in touch with teammates.
Impact on the family
When a child or young person in a family is ill, the extra care and attention that is needed can have major consequences for the other family members and environment. The family has to take the sick child into account and this puts extra pressure on the other family members. For parents, this can mean a caregiving role with a demanding care task that sometimes also requires adjustments in work (hours) due to the care of the child or young person at home.
More attention may also be directed towards the sick child than towards siblings. In addition, they must adapt to the situation due to the sick child's sensitivity: keeping quieter, adjusting their daily routine, and spending holidays differently. Long COVID affects not only the patient but also everyone around them. >> Read more here about the psychological and social consequences and tips on how to deal with them.
There are various agencies where children and young people can ask for help. For advice, answers to questions and information about research, there are several websites. For this, look at frequently asked questions or the useful links on this page.
Frequently asked questions
The severity of post-COVID varies from child to child. In fact, they all suffer from hypersensitivity to crowds, noise, light, and other stimuli. Some children can attend school or participate in activities to a limited extent, while others are largely housebound. In severe cases, children may even become bedridden and be unable to tolerate any stimuli at all.
Children with Long COVID fall under authorized absence. The youth doctor, also known as the school doctor, is the designated person to formulate a recommendation based on consultations with the parents, the student, the school, and any advice from an occupational therapist. A statement regarding work capacity is not necessary. The work capacity of a child with Long COVID can vary significantly from day to day and week to week. If a statement indicates that the work capacity has a specific duration and a child experiences a relapse (or PEM ), a written statement regarding work capacity can put parents in a difficult position.
Advice based on insights from the youth doctor who coordinates this with the child or young person, parents, school and if necessary in consultation with therapists and the truancy officer is sufficient for compulsory education. Together we can look at whether and how appropriate participation in education can be resumed. See also advice on school participation after corona measures expire.
The youth doctor works within a youth healthcare team and collaborates with the neighborhood team. In the event of long-term absenteeism due to illness, the school contacts the youth healthcare service (JGZ), and parents can also submit questions there. The youth doctor is bound by medical confidentiality. If necessary, the youth doctor can, with the permission of the student and parents, request information from the treating physician of the young person and/or the vulnerable family member.
The term resilience is not always used consistently by professionals at school, youth health care, and compulsory education. It therefore regularly leads to discussion. That is why this document drawn up to clarify the role of the JGZ in assessing the resilience of sick-reported young people.
For questions about psychological and social problems:
- Digital Help Guide: points the way in psychological and social problems in various domains where questions arise, including:
- Need a listening ear
- Help with personal problems
- Meaningful life and social assistance
- Youth Health Care (JGZ): within a municipality, the JGZ is concerned with the health, development and growth of your child. You can go here for free advice, information, basic medical care and support in growing up and raising children. This also includes the Consultation Bureau for children aged 0-4 and GGD Youth Health Care for children aged 4-18.
- Center for Youth and Family (CJG): offers help and advice on parenting issues. It is a place where parents, children and professionals can go with questions about health, growing up and parenting.
- Youth help online: here you will find more than 20 helplines that offer you fast, anonymous and free support. Via chat, phone or email. Reliable and professional.
- Mentally vital: (part of the Trimbos Institute) provides information about mental health, offers exercises and helps you find help.
For questions about educational support:
- Network Ziezon: support for sick children in education. The network also offers a lot of knowledge and information for parents, teachers, school boards and partnerships.
- Parents & Education: information about education and more for parents with school-age children.
- Partnership for appropriate education: information about appropriate education, the working methods and additional support options for parents with school-age children.
- Carefree to School Foundation – practical tips: tailor-made at school for pupils (primary/secondary education) and students (vocational education) with a chronic illness. Here is a your guides with tips for making practical arrangements with the school.
- Carefree to School Foundation – distance learning: distance learning options for pupils/students who can only attend school/training for a few hours. With a route map for students for whom distance learning could be a good solution.
- OZL – Educational Support for Sick Students: looking for opportunities to offer sick students the right form of education. Regional care: educational support in Gelderland, Brabant and Limburg.
- Educational consultants: if parents have a dispute with the primary care facility (collaboration), they can contact an education consultant. This person supports the advocacy of the child and talks to parents, school, municipality and/or collaboration to find solutions and appropriate care.
- NJI educational care arrangement: especially for children who need educational and care support, there is a collaboration between education and youth care and parents. The development of the child at school is central. Educational-care arrangements are available for individual children and for groups of children.
For questions about development support:
- Youth care under the Youth Act: for children and young people there is the Youth Act. This act regulates almost all care and support for children and young people under the age of 18. Here you can find out how to apply for youth care and what it entails. Sometimes care for young people is also provided under the Health Insurance Act, the Long-term Care Act or the Wmo.
- Regulation assistance Wmo youthDoes your child have an illness, disability (such as severe multiple disabilities), or developmental delay? Then various forms of help and support are available.
- Wlz care for youth: the Long-term Care Act regulates care for people who need lifelong and life-wide support, at home or in a care institution. Children and young people can also receive Wlz care if they meet the conditions.
- Integrated Early Help: for questions about developmental delays and/or behavioral problems in young children up to 8 years of age.
Schedule a periodic progress meeting at school to evaluate progress and make agreements regarding the adapted education to be followed. The occupational therapist and/or treating physician of your child or young person can support you in this, within the framework of personal capacity. Ziezon can support your child at school. When a student has a long-term, chronic, or life-threatening condition with (potential) consequences for their school career, it is possible to engage a Consultant for Education of Sick Students (OZL) . This consultant can provide temporary help and guidance to the school, the parents, and the student. The OZL consultant provides care for or supports with, among other things:
- contact between school, hospital, student and parents;
- information and advice to teachers about teaching sick students;
- information for teachers, parents, (healthcare) professionals and classmates about dealing with sick pupils;
- education and guidance of the sick pupil at home, in hospital and at school;
- (organizing) lessons at home or in the hospital together with the school, if the school's own teachers are unable to do this;
- information about diseases and their possible consequences for school performance;
- creating an action plan for the sick student together with the school.
NB: There are children and young people who are unable to go to school or to build up activities. The advice given in this answer does not apply to this group of children.
It is often an individual battle between parents and school, for recognition of post-COVID complaints and for Appropriate Education. What are these children entitled to? What care is there for these children?
- In consultation with the education consultant who is connected to your child's school, the possibilities for appropriate education are discussed. Think of home education, class contact, KPN home education, extra support for children with an educational disadvantage, possibly by a remedial teacher.
- If the school is unable to act, which means that it cannot provide appropriate education and/or your child has suffered too great an educational disadvantage, a referral to special education (SO Cluster 3) will be advised. In the case of seriously ill children, there are no taxable possibilities. For example, PEM of POTSIn that case, any reference has no added value.
Prolonged fatigue, school absenteeism, numerous medical complaints, and reluctance towards certain treatments can sometimes be mistakenly viewed as signs of neglect or falsification. However, these phenomena can actually be characteristic of a PAIS. It is important to distinguish between falsification and PAIS clinical pictures.
[Falsification is a form of child abuse in which a child's complaints are fabricated, exaggerated, or caused by a parent or caregiver. This is a very rare situation (prevalence estimated at 0.4-2 per 100.000 children).]
Misinterpretation of symptoms can lead to unnecessary stress for the child and the family, as stress is a known trigger for relapse or worsening of symptoms in children with PAIS. Unfounded suspicions of unsafety can cause significant harm. Therefore, good listening, asking follow-up questions, an open attitude, and knowledge of PAIS are essential.
In the event of a Veilig Thuis report, it is appropriate to always engage in a conversation with Veilig Thuis, no matter how unjustified the report may feel. For more information about their working methods, visit veiligthuis.nl. Tips:
- Get well informed about what the report is about. Try to discuss unexplained complaints that arise from Long COVID and/or areas where this has an effect. Explain what this looks like and what this does to your child.
- Always remain in conversation with the relevant agency that Veilig Thuis uses to investigate whether and what kind of help is appropriate. For example, a neighborhood team, youth worker or social worker. This is not there to work against you, but to jointly look at possibilities that can be helpful.
- You can at the BIVKZ right with questions. They represent the interests of parents and chronically, seriously ill or care-intensive children at VT Notifications in the Netherlands.
