Expanding the phenotype of NEDAMSS with a psychiatric perspective: analysis of a new case, and a systematic review of the literature.

Pathogenic variants in the IRF2BPL gene are associated with neurodevelopmental disorders with varying degrees of regression, loss of speech and epilepsy. The phenotype is also known as Neurodevelopmental Disorder with regression, Abnormal Movements, loss of Speech, and Seizures (NEDAMSS). The motor symptoms of this disorder share significant phenotypical characteristics with catatonia, a severe neuropsychiatric psychomotor syndrome. The objective of this article is to expand the knowledge on the presentation of NEDAMSS with a focus on psychiatric symptoms including catatonia. A systematic review of 32 case presentations of NEDAMSS, and a novel case report of a patient with NEDAMSS, exhibiting multiple psychiatric symptoms, including catatonia are presented. Psychiatric symptoms and disorders including affective disorders, psychotic symptoms, catatonia, and developmental disorders are reported in one third of the reviewed cases. Reported effects of pharmacological treatment on motor symptoms of NEDAMSS are very limited. Our case presents improvement in motor symptoms originally attributed to NEDAMSS, after treatment with Lorazepam following diagnosis with catatonia. Patients with NEDAMSS may present with both neurological and psychiatric symptoms. The clinical presentation of NEDAMSS motor symptoms and catatonia have similarities and thus poses significant challenges to the diagnostic process, with risk of incorrect or delayed treatment. The limited experience and the complex phenotype of NEDAMSS complicates pharmacological treatment and encourages caution, especially with the use of antipsychotic drugs in the presence of possible catatonic symptoms.

Linking heart and mind - lived experiences of parents to children with congenital heart disease and mental health issues.

Children with congenital heart disease are more likely to receive special educational services in schools and have an increased risk of mental health issues. We explored the lived experiences of parents caring for a child with heart disease and concurrent mental health issues in Denmark. Semi-structured interviews with ten parents (age 39-57 years) to these children (age 5-17 years) were analysed using interpretative phenomenological analysis. Three Group Experiential Themes (GETs) were generated from the analysis: The first GET, Parental roles and caring behaviours, described parental struggles of fulfilling their parenting role ideals and experiences with stigmatization of MHI. GET two, Parental reflections on their illness explanations, portrayed how parents utilize different illness explanations to make sense of their child's MHI. GET three, Differences in access to help and support, captured how the CHD affected overall access to mental health support. The results may inform various topics of importance for health professionals to address in their clinical encounters with these families.

Congenital heart disease is the most common congenital condition, affecting approximately 1% of newborns. Parents of these children often experience substantial psychological distress due to the fear of losing their child, the burden of hospital stays and surgeries, and concerns about their child's future health. Additionally, children with congenital heart disease more often require special education services and face a higher risk of mental health issues. Parenting a child with mental health issues also presents specific challenges, as parents may find it hard to access proper help for their child, may feel stigmatised or have feelings of blame and guilt. We explored the lived experiences of parents raising a child with both heart disease and mental health issues in Denmark by interviewing ten parents (aged 39­57) of children (aged 5­17). Through qualitative analysis, we identified 3 themes of importance for these parents: (1) Parental roles and caring behaviours: Parents struggled with meeting their own parenting ideals and dealing with the stigma of mental health issues. (2) Parental reflections on their illness explanations: Understanding the child's mental health issues was important. Parents often perceived a connection between their child's heart disease and mental health issues, influenced by biological, psychological, or social factors. (3) Differences in access to help and support: Parents described how their child's heart disease impacted their ability to obtain mental health support. Some felt that the heart disease delayed access to mental health support, while others leveraged the physical condition to secure mental health support. Overall, these findings might assist health professionals in providing better support to these families in clinical settings.

Pandemic life in families with health anxiety symptoms, parental perspectives.

Background: The covid-19 pandemic has influenced children and parents worldwide. The pandemic has also been suggested to especially affect and exacerbate health anxiety (HA) symptoms in children and adolescents. However, there is limited understanding of the potential mechanisms challenges of families where parents themselves experience mental health issues such as high degree of HA symptoms. Objective: The aim of this study was to explore parental experiences of pandemic life in families with continuously high levels of HA symptoms during the covid-19 pandemic. Method: Six parents, identified with high levels of HA symptoms, participated in qualitative individual semi-structured interviews. Interviews were analysed according to Interpretative Phenomenological Analysis principles. Results: Three main themes emerged. Theme 1) "Anxious children in a pandemic world" explores how pandemic - independent child factors including anxious temperament may have influenced the child pandemic experience. Theme 2) "Parental influences on child anxiety" describes parental reflections on their possible influence on child anxious thoughts. Theme 3) "Living with pandemic guidelines and restrictions" demonstrates the varying parental experiences of interventions and how these may affect HA thoughts. Conclusion: Parents who themselves experience HA symptoms see their children, who also experience HA symptoms, to be particularly susceptible and vulnerable to both content and rhetoric of pandemic information. These children may however, experience school lockdown to be anxiety relieving. Parents who themselves have illness-related fears may not see themselves as perpetuating for their child's anxious thoughts.

Impact of COVID-19 restrictions on self-poisoning behaviour with mild analgesics in Danish youth.

BACKGROUND: The COVID-19 pandemic prompted the implementation of precautions to contain the disease, including lockdowns and social isolation. Previous studies have investigated suicide rates among children and adolescents during the pandemic and have found varying results. We speculated how the two lockdowns influenced suicidal behaviour in children and adolescents in Denmark. OBJECTIVE: This study aimed to investigate the effect of lockdowns during the COVID-19 pandemic on suicide attempts, as measured by the incidence rate in all self-poisonings with mild analgesics among children and adolescents. METHODS: This national Danish registry-based study on children and adolescents used Poisson regression and interrupted time series analysis to examine the incidence rates and trends of self-poisonings with mild analgesics from 2019 to mid-2021. RESULTS: For the period of this study, 1655 self-poisonings were registered. During the first lockdown, there was a slight, not statistically significant, decrease in self-poisoning rates (incidence rate ratio [IRR]) 0.98) compared to no lockdown. During the second lockdown, there was a significant increase in self-poisonings for the whole Danish population (IRR 1.85) with girls being slightly higher at risk (IRR 1.87). Being a girl or between the ages of 13-17 years old were risk factors for self-poisoning. CONCLUSION: These findings indicate that the restrictions enforced during the second lockdown greatly impacted youth mental health, especially girls, leading to an 85% increase in self-poisonings. We hope for increased awareness of mental health in children and adolescents during possible future lockdowns.

Health anxiety by proxy - through the eyes of the parents.

Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to develop the Health Anxiety by Proxy Scale. The present study is a secondary analysis of these semi-structured interview data using interpretative phenomenological analysis aiming to explore for the first time the lived experience of parents with health anxiety by proxy. Analysis revealed three main themes: 'Faces of distress' describing various aspects of parents' experienced distress; 'Invasive insecurity and mistrust' portraying how anxiety affects parents' relationship with their children, health professionals and family; and 'Making sense of own worries' covering parents' ambivalence regarding their anxiety and rationalization of their worries. Knowledge about perspectives of parents who suffer from health anxiety by proxy can inform communication in clinical encounters where validation of parents' experiences may be key to forging an alliance for further treatment; and to recognising and potentially lowering barriers to receiving help that lies in parents' potential mistrust in professional help.

Health anxiety symptoms in Danish children during the first lockdown period of the COVID-19 pandemic: an Odense Child Cohort study.

PURPOSE: The coronavirus disease 2019 (COVID-19) pandemic has a severe impact on the general population. During the pandemic, children may develop emotional and psychological symptoms, including increased worries about health and illness, known as health anxiety symptoms (HASs). We aimed to explore HAS in 7-9-year-old children from the Danish Odense Child Cohort (OCC) during the first COVID-19 lockdown period in Denmark, and to examine associations with potential risk factors. MATERIAL AND METHODS: OCC is a cohort of children born between 2010 and 2012, which originally recruited 2874 of 6707 pregnancies (43%). Among the current OCC population of 2430 singleton children, 994 participated in this study (response rate 40%). Children and their parents filled out questionnaires about child HAS, family exposure to COVID-19 infection and parental HAS. Adjusted odds ratios (aORs) were calculated between high score child HAS (≥90th percentile) and covariates by use of logistic regression. RESULTS: Most children (n = 686, 69%) reported few worries about their health. Children reporting high score HAS also had higher levels of internalizing symptoms at age 5; aOR 2.15 (1.20;3.85), p = .010, and higher levels of maternal and paternal HAS; aOR 2.40 (1.44;3.97), p = .001, and 2.00 (1.10;3.65), p = .023, whereas no association with child sex or familial exposure to COVID-19 was detected (n = 65, 6.5%). CONCLUSIONS: High score child HAS during the first lockdown period of the COVID-19 pandemic was not associated with family exposure to COVID-19 infection, but to being a more anxious child a priori and to HAS in parents.

'I can hardly breathe': Exploring the parental experience of having a child with a functional disorder.

Functional disorders in children and adolescents are common. Still, little is known about parents' experience of having a child with a functional disorder. The aim of this qualitative interview study was to explore challenges encountered by parents caring for a child undergoing treatment for functional disorder. Sixteen parents to children with functional disorders were interviewed when their child was referred from a paediatric department for further specialized treatment with family therapy in child and adolescent mental health services. Analysis identified three themes, reflecting the parental experiences: parents in limbo, which described how limited knowledge about functional disorders among professionals in non-specialized settings influenced parental roles; a counterintuitive kind of caring, describing parental struggles with adhering to treatment recommendations for functional disorders; and challenges to parental identity, describing parental emotional challenges. These challenges may bar the acceptance of psychological treatment approaches in families with a child with functional disorders.

Illness perceptions of youths with functional disorders and their parents: An interpretative phenomenological analysis study.

BACKGROUND: Functional disorders, defined as disorders with no clear medical explanation, are common and impose a significant burden on youths, their families, healthcare services and society as a whole. Currently, the literature describes resistance among patients and their families towards psychological symptom explanations and treatments. More knowledge about the thoughts and understandings of youths with functional disorders and their parents is needed. The aim of this study was to explore the illness perceptions of youths with severe functional disorders and their parents. METHODS: A qualitative interview study using interpretative phenomenological analyses. The study included 11 youths aged 11-15 years with functional disorders and their parents, where interviews were performed at the point of referral from a somatic to a psychiatric treatment setting. RESULTS: Analyses identified three main themes. Themes 1(Ascribing identity to the disorder) and 2 (Monocausal explanations) explore key elements of the participants' illness perceptions, and theme 3 (Mutable illness perceptions) explores how illness perceptions are influenced by experiences from healthcare encounters. CONCLUSIONS: The label 'functional disorder' was poorly integrated in the illness perceptions of the youths and their parents. Participants used a monocausal and typically physical explanation rather than a multicausal biopsychosocial explanation for their symptoms.

[Pervasive refusal syndrome is a severe child psychiatric disorder]. / Afvisningssyndrom er en alvorligbørnepsykiatrisk tilstand

Pervasive refusal syndrome (PRS) is a severe, pervasive and potentially life-threatening disorder, which was first de--scribed in 1991, as a syndrome of child psychiatric disorder. Little has been written about PRS. We report a case story of a ten-year-old boy developing all symptoms of PRS, including inability to eat, move or speak. Psychopharmacological treat-ment was not successful. Full rehabilitation was reported after a period of inpatient treatment and outpatient follow-up. Different aetiological factors for PRS have been proposed. A number of these are presented in the case story.