1. |
- Billstedt, Eva, 1961, et al.
(författare)
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Cognitive functioning in a representative cohort of preschool children with febrile seizures
- 2020
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 109:5, s. 989-94
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Tidskriftsartikel (refereegranskat)abstract
- Aim To analyse cognitive functioning in 4-5-year-old children who had experienced febrile seizures (FS) and to assess the importance of complex, recurrent and early vs late onset FS. Methods The sample consisted of 73 children, screen positive for FS, drawn from the general child population of 4-year-old children attending their health check-up at child healthcare centres in Gothenburg, Sweden. They were assessed as regards general cognitive ability, visual memory and attention and were contrasted with age norms and with results obtained in 20 children without FS from the same healthcare centres. Results Of the 73 children, two had a previously diagnosed intellectual disability (ID) (one mild, one moderate) and two further children tested within the study had results corresponding to mild ID. Children with early onset of FS (before age 12 months)-who often had recurrent FS-had lower full-scale, verbal and processing speed IQ than those who had later onset of FS. Conclusion Children with early onset of FS and particularly those with recurrent FS may be at increased risk for poorer verbal and processing speed functioning and therefore at risk of developing cognitive, executive dysfunctions. They would probably benefit from neuropaediatric and neuropsychological follow-up.
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2. |
- Gillberg, Christopher, 1950, et al.
(författare)
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Bengt Hagberg.
- 2015
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Ingår i: Acta paediatrica (Oslo, Norway : 1992). - : Wiley. - 1651-2227 .- 0803-5253. ; 104:10
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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3. |
- Nilsson, Gill, et al.
(författare)
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Neurodevelopmental problems should be considered in children with febrile seizures
- 2019
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 108:8, s. 1507-1514
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Tidskriftsartikel (refereegranskat)abstract
- Aim: Clinical developmental phenotyping of four- to five-year-old children with febrile seizures (FSs).Methods: Children with FS (n = 157, corresponding to 3.7% of the targeted general population of four-five-year-olds) had been identified at child healthcare centres in Gothenburg. Parents of 73 children (41 boys, 32 girls) accepted participation in the present study. The assessments included a neuropaediatric assessment, Movement ABC, Wechsler Preschool and Primary Scale of Intelligence-III and parent questionnaires (Five-to-Fifteen (FTF) and Strengths and Difficulties Questionnaire (SDQ)). Hospital records were reviewed, when applicable.Results: One-third of the children had at least one DSM-5 neurodevelopmental disorder diagnosis or marked developmental problems within areas of attention, activity regulation, behaviour, speech and language, general cognition or motor functioning. No differences were found between children with single vs recurrent or simple vs complex FS.Conclusion: Febrile seizure are relatively often associated with Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations (ESSENCEs). We found no indications that ESSENCE might be caused by FS per se. However, the results suggest that child healthcare professionals should consider the possibility of ESSENCE in children with a history of FS.
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4. |
- Nilsson, Gill, et al.
(författare)
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Prevalence of Febrile Seizures, Epilepsy, and Other Paroxysmal Attacks in a Swedish Cohort of 4-Year-Old Children.
- 2016
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Ingår i: Neuropediatrics. - : Georg Thieme Verlag KG. - 1439-1899 .- 0174-304X. ; 47:6, s. 368-373
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Tidskriftsartikel (refereegranskat)abstract
- A questionnaire about any type of seizures was distributed to parents at the children's 4-year health surveillance at Child Healthcare Centers in Gothenburg, Sweden, to analyze the prevalence of febrile seizures (FS), epilepsy, and other paroxysmal attacks. Parents who reported any kind of seizures in their child were subsequently contacted by telephone to confirm the information given and to invite the child to a clinical assessment. In addition, hospital registers and individual records were checked of the appropriate age group as regards a diagnosis of epilepsy or febrile seizures. Parents of 4,290 of 6,076 eligible children (71%) completed the questionnaire. For 252 children (5.9%), any type of paroxysmal attack was reported: FS in 157/4,290 children (3.7%), epilepsy in 22/4,290 (0.5%), and other paroxysmal attacks in 75/4,290 (1.7%). Epilepsy developed in 4 out of 157 (2.5%) children with FS before their fifth birthday. This population-based study, covering all types of paroxysmal attacks in preschool children revealed a total prevalence of nearly 6%, the largest group being FS. The total rate of paroxysmal attacks in preschool children is equal to the rate of developmental/neuropsychiatric disorders in this age group. The conditions constitute a large group in pediatrics and entail considerable concern among parents.
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5. |
- Abrahamsson, Kate, 1959, et al.
(författare)
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Estimation of renal function in children and adolescents with spinal dysraphism.
- 2008
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Ingår i: The Journal of urology. - : Ovid Technologies (Wolters Kluwer Health). - 1527-3792 .- 0022-5347. ; 179:6, s. 2407-9
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: In children with spinal dysraphism such as myelomeningocele the relation between muscle mass and body composition varies considerably. Therefore, it is difficult to evaluate the relevance of renal function assessments done with serum creatinine. Since serum cystatin C has been suggested to be independent of body size and composition, this evaluation was compared to chromium(51) edetic acid clearance. MATERIALS AND METHODS: Simultaneous measurements of cystatin C and chromium(51) edetic acid clearance were performed prospectively in 65 patients 2 to 19 years old with spinal dysraphism. RESULTS: Cystatin C values were within the normal range in all patients, while chromium(51) edetic acid clearance was reduced in 10. A significant relation was seen. CONCLUSIONS: Using chromium(51) edetic acid clearance as a gold standard, children with spinal dysraphism and slightly to moderately reduced renal function may remain undiagnosed if cystatin C is used for evaluation.
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6. |
- Abrahamsson, Kate, 1959, et al.
(författare)
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Urodynamic findings in children with myelomeningocele after untethering of the spinal cord
- 2007
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Ingår i: J Urol. - : Ovid Technologies (Wolters Kluwer Health). - 0022-5347. ; 177:1
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The effect on bladder function of tethered spinal cord release in individuals with myelomeningocele differs in published studies, and the benefit has been the subject of debate. We studied the urodynamic findings in a consecutively treated population. MATERIALS AND METHODS: Of 120 children born with myelomeningocele between 1986 and 1999, 20 underwent surgery for the tethered cord syndrome at a median age of 8 years (range 2 to 13). Time points for cystometry used for comparison were before symptoms at a median age of 20 months (range 9 to 106), a median of 5 months preoperatively (1 to 33) and at 12 months postoperatively (6 to 19). Severe bladder dysfunction was defined as basal pressure more than 40 and/or overactivity greater than 60 cm H2O, moderate dysfunction as basal pressure 20 to 40 and/or overactivity 20 to 60 cm H2O, and mild dysfunction as basal pressure less than 20 cm H2O. RESULTS: Of the 20 patients who underwent untethering 7 had improvement to a milder dysfunctional level, while 1 deteriorated postoperatively. Six patients experienced deterioration in bladder dysfunction level before untethering, and all returned to a milder level afterward. A total of 10 patients had unchanged bladder dysfunction before symptoms and preoperatively. Of these patients 9 (90%) continued unchanged after untethering, while 1 deteriorated. CONCLUSIONS: After untethering secondary to myelomeningocele 35% of the patients experienced improved bladder function and 5% deteriorated. All of the patients who deteriorated before untethering improved afterward, and 90% of those who were stable preoperatively continued to be stable postoperatively. Therefore, regular evaluation of bladder function in children with myelomeningocele should be performed.
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7. |
- Ambrosi, Aurelie, et al.
(författare)
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Development of heart block in children of SSA/SSB-autoantibody-positive women is associated with maternal age and displays a season-of-birth pattern
- 2012
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Ingår i: Annals of the Rheumatic Diseases. - London : BMJ Publishing Group. - 0003-4967 .- 1468-2060. ; 71:3, s. 334-340
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Tidskriftsartikel (refereegranskat)abstract
- Objective Congenital heart block may develop in the fetuses of Ro/SSA-positive and La/SSB-positive mothers. Recurrence rates of only 10-20% despite persisting maternal antibodies indicate that additional factors are critical for the establishment of heart block. The authors investigated the influence of other maternal and fetal factors on heart block development in a Swedish population-based cohort. less thanbrgreater than less thanbrgreater thanMethods The influence of fetal gender, maternal age, parity and time of birth on heart block development was analysed in 145 families, including Ro/La-positive (n=190) and Ro/La-negative (n=165) pregnancies. less thanbrgreater than less thanbrgreater thanResults There was a recurrence rate of 12.1% in Ro/La-positive women, and no recurrence in Ro/La-negative women. Fetal gender and parity did not influence the development of heart block in either group. Maternal age in Ro/La-positive pregnancies with a child affected by heart block was, however, significantly higher than in pregnancies resulting in babies without heart block (pandlt;0.05). Seasonal timing of pregnancy influenced the outcome. Gestational susceptibility weeks 18-24 occurring during January-March correlated with a higher proportion of children with heart block and lower vitamin D levels during the same period in a representative sample of Swedish women and a corresponding higher proportion of children with heart block born in the summer (pandlt;0.02). Maternal age or seasonal timing of pregnancy did not affect the outcome in Ro/La-negative pregnancies. less thanbrgreater than less thanbrgreater thanConclusion This study identifies maternal age and seasonal timing of pregnancy as novel risk factors for heart block development in children of Ro/La-positive women. These observations may be useful for counselling when pregnancy is considered.
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8. |
- Ben-Menachem, Elinor, 1945, et al.
(författare)
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Epilepsi
- 2011
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Ingår i: Läkemedelsboken 2011-2012. - Uppsala. : Läkemedelsverket. - 9789197960502 ; , s. 965-76
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Bokkapitel (refereegranskat)
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9. |
- Bjellvi, Johan, et al.
(författare)
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Epilepsy duration and seizure outcome in epilepsy surgery: A systematic review and meta-analysis
- 2019
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Ingår i: Neurology. - 1526-632X. ; 93:2
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To conduct a systematic review and meta-analysis on the effect of earlier or later resective epilepsy surgery on seizure outcome. METHODS: We searched the electronic databases PubMed, EMBASE, and Cochrane Library for studies investigating the association of epilepsy duration and seizure freedom after resective surgery. Two reviewers independently screened citations for eligibility and assessed relevant studies for risk of bias. We combined data in meta-analyses using a random effects model. We assessed the certainty of evidence according to Grading of Recommendations Assessment, Development and Evaluation (GRADE). RESULTS: Twenty-five studies were included, 12 of which had data suitable for meta-analyses. Comparing seizure outcome if epilepsy surgery was performed before vs after 2, 5, 10, and 20 years of epilepsy duration, and comparing epilepsy duration <5 years to >10 years, we found significant effects favoring shorter duration with risk differences ranging from 0.15 to 0.21 and risk ratios ranging from 1.20 to 1.33 (p < 0.01 for all comparisons). According to GRADE, we found low certainty of evidence favoring shorter epilepsy duration before surgery. CONCLUSION: People with shorter epilepsy duration are more likely to be seizure-free at follow-up. Furthermore, there is a positive association between shorter duration and seizure freedom also for very long epilepsy durations. Patients who might benefit from epilepsy surgery should therefore be referred for presurgical assessments without further delay, regardless of epilepsy duration. The low certainty of evidence acknowledges concerns regarding study heterogeneity and possible residual confounding. Copyright © 2019 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.
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10. |
- Borg, Helena, et al.
(författare)
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Impact of spinal cord malformation on bladder function in children with anorectal malformations.
- 2009
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Ingår i: Journal of pediatric surgery. - : Elsevier BV. - 1531-5037 .- 0022-3468. ; 44:9, s. 1778-85
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Risk factors for the presence of neurogenic bladder dysfunction (NBD) in children born with high anorectal malformations (ARMs), were investigated, to identify the need for urodynamics in these patients. MATERIAL AND METHODS: The study included 37 patients with high ARMs (21 boys and 16 girls). Bladder function was evaluated with urodynamics both before and after anorectoplasty (posterior sagittal anorectoplasty [PSARP]). All patients were investigated with spinal radiograph. Spinal ultrasound was performed in the neonatal period, and magnetic resonance imaging was added in case of abnormal ultrasound or urodynamics and in case of cloacal malformation. RESULTS: In ARM patients with rectourethral and vestibular fistulas and cloacas, NBD was identified in 9 children (25%). The bladder dysfunction was innate in all cases except in one girl with cloaca, indicating that the risk of iatrogenic denervation seems minimal using the PSARP technique. All children with innate NBD had a spinal cord malformation either as spinal cord regression or tethering with or without a lipoma. Concerning vertebral status, almost all children with NBD had partial sacral agenesis. Abnormal perineal appearance was highly correlated to NBD in boys, especially in those with a spinal cord regression malformation. Innate NBD was not found in any child with normal spinal cord. CONCLUSION: From these results, we suggest that spinal ultrasound and perineal inspection are used as screening procedures for NBD in children with ARM. Urodynamic investigation is recommended only when spinal cord anomalies or other signs indicative of NBD are present. In case of spinal cord malformation, repeated urodynamics during follow-up is mandatory because of the risk for developing tethered cord syndrome.
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11. |
- Carlsson, Malin, et al.
(författare)
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Behaviour in children with cerebral palsy with and without epilepsy.
- 2008
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Ingår i: Developmental medicine and child neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 50:10, s. 784-9
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to describe behavioural problems in children with cerebral palsy (CP) with and without epilepsy. The children were sampled from the Western Sweden CP register and were part of a European Union project. The Strength and Difficulties Questionnaire and questions on epilepsy were answered by one parent of each child. Medical records were reviewed. Parents of 83 children (44 males, 39 females) age range participated: 30 at Gross Motor Function Classification System levels I and II, and 53 at levels III to V; 60 had spastic age range 8 to 12 years (bilateral 42, unilateral 18) and 23 dyskinetic CP; 34 children had active epilepsy. The proportion of children with normal behaviour on the total difficulties score (TDS) of the Strength and Difficulties Questionnaire was significantly lower than normative data (57% vs 80%, p<0.001). Parents of 21 children (25%) considered their child's behaviour to be abnormal. Children with CP and epilepsy had a significantly higher median TDS (p=0.03) than seizure-free children. In children with aided or no walking ability, the TDS was significantly higher in those with epilepsy (p=0.04). Parents of 32 children (39%) considered their children's behaviour to have an impact on themselves and others. We conclude that behavioural problems are common in children with CP, and even more when epilepsy is present. Parents identify these problems, and professionals need to address them.
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12. |
- Chioza, B., et al.
(författare)
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Evaluation of CACNA1H in European patients with childhood absence epilepsy
- 2006
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Ingår i: Epilepsy Res. - : Elsevier BV. - 0920-1211. ; 69:2, s. 177-81
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Tidskriftsartikel (refereegranskat)abstract
- CACNA1H was evaluated in a resource of Caucasian European patients with childhood absence epilepsy by linkage analysis and typing of sequence variants previously identified in Chinese patients. Linkage analysis of 44 pedigrees provided no evidence for a locus in the CACNA1H region and none of the Chinese variants were found in 220 unrelated patients.
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13. |
- Danielsson, Susanna, 1964, et al.
(författare)
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Epilepsy in young adults with autism: a prospective population-based follow-up study of 120 individuals diagnosed in childhood.
- 2005
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Ingår i: Epilepsia. - : Wiley. - 0013-9580 .- 1528-1167. ; 46:6, s. 918-923
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Little is known about the long-term outcome of epilepsy in autism and the epilepsy characteristics of adults with autism. This prospective population-based study was conducted in an attempt to point out differences on a group basis between adults with autism with or without epilepsy, and to describe the occurrence, the seizure characteristics, and the outcome of epilepsy in autism. METHODS: One hundred eight of 120 individuals with autism diagnosed in childhood and followed up prospectively for a period of 13-22 years were reevaluated at ages 17-40 years. As adults, the majority had mental retardation and autistic disorder or autistic-like condition. Interviews were performed with the caretakers of 42 of 43 individuals with a history of epilepsy, and their medical records were reviewed. RESULTS: Adults with autism and mental retardation constituted a severely disabled group. On a group basis, both the cognitive level and the adaptive behavior level were lower in the epilepsy group than in the nonepilepsy group (p<0.05). In all, 38% had epilepsy. One third had epilepsy onset before age 2 years. Remission of epilepsy was seen in 16%. Partial seizures with or without secondarily generalized seizures were the dominating seizure type. CONCLUSIONS: In a community sample of individuals with autism followed up from childhood through to adult age, one of three had epilepsy since childhood/adolescence. Severe mental retardation and autism are significantly associated with epilepsy, especially in female patients. Seizure frequency has a great impact on the individuals' lives. Specialist medical care is needed in this severely communication-disabled population.
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14. |
- Danielsson, Susanna, 1964, et al.
(författare)
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Lack of effects of vagus nerve stimulation on drug-resistant epilepsy in eight pediatric patients with autism spectrum disorders: a prospective 2-year follow-up study.
- 2008
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Ingår i: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050. ; 12:2, s. 298-304
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Tidskriftsartikel (refereegranskat)abstract
- Vagus nerve stimulation (VNS) therapy has been reported to reduce seizure frequency in some children with drug-resistant epilepsy who are not suitable candidates for epilepsy surgery. It has been suggested that there may be positive cognitive and/or behavioral effects independent of seizure control. We describe the effects of VNS with respect to seizure frequency, cognition, and autistic symptoms and behavior in eight children and adolescents with medically intractable epilepsy and autism. In comparison to baseline, seizure frequency had not decreased in anyone in our series at the 2-year follow-up. In three cases, minor improvements in general functioning were noted, but there were no positive cognitive effects. This open prospective pilot study highlights the need for more prospective studies to prevent false expectations of improvement in this severely disabled group.
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15. |
- Danielsson, Susanna, 1964, et al.
(författare)
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Psychopathology, psychosocial functioning, and IQ before and after epilepsy surgery in children with drug-resistant epilepsy.
- 2009
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Ingår i: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050. ; 14:2, s. 330-337
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Tidskriftsartikel (refereegranskat)abstract
- This is a prospective study of a consecutive series of children undergoing epilepsy surgery. The main aims were to evaluate the heterogeneity with respect to psychopathology and IQ, and to use a global assessment scale (Children's Global Assessment Scale [CGAS]) to evaluate psychosocial functioning. Clinical neuropsychiatric and neuropsychological assessments were made at baseline and at the 2-year follow-up in 24 patients, and changes were analyzed at an individual level. Psychiatric disorders (mainly attention deficit hyperactivity disorder and/or autism spectrum disorders) were found in 17 of 24 at some point. All except one child with psychiatric diagnoses before surgery still had at least one diagnosis at follow-up. Intellectual ability remained stable in the majority of cases, both in individuals with and in individuals without mental retardation. The CGAS illustrated the consequences of the extensive comorbidity in this cohort. The behavioral problems had been undiagnosed despite parental concern in many cases, indicating an unrecognized need for services for children with drug-resistant epilepsy.
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16. |
- Danielsson, Susanna, 1964, et al.
(författare)
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Temporal Lobe Resections in Children with Epilepsy: Neuropsychiatric Status in Relation to Neuropathology and Seizure Outcome.
- 2002
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Ingår i: Epilepsy & behavior : E&B. - 1525-5069. ; 3:1, s. 76-81
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this work was to relate clinical neuropsychiatric findings to histopathological diagnoses and seizure outcome in a retrospective study of 16 children undergoing temporal lobe resections due to medically intractable epilepsy. These children constitute a heterogeneous group in which neuropsychiatric symptoms were common. The results of this study indicate a correlation between malformations of cortical development, less chance of seizure freedom, and neuropsychiatric problems in children with pharmacoresistant temporal lobe epilepsy. It is important to include neuropsychiatric assessments pre- and postoperatively and to inform parents that symptoms of autism spectrum disorders may or may not be improved after epilepsy surgery.
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17. |
- Edelvik, Anna, 1971, et al.
(författare)
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Hälften är långsiktigt fria från anfall efter epilepsikirurgi
- 2018
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Ingår i: Läkartidningen. - 0023-7205. ; 115:21
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Forskningsöversikt (refereegranskat)abstract
- Personer med läkemedelsresistent epilepsi bör remitteras till regionala epilepsiteam för utredning och bedömning av behandlingsalternativ, bland annat epilepsikirurgi. Om magnetresonanstomografi visar en epileptogen lesion som är åtkomlig för kirurgi är operation ett effektivt behandlingsalternativ, och en epilepsikirurgisk utredning kan vara relativt begränsad. Även om magnetresonanstomografi bedöms normal kan en epilepsikirurgisk utredning vara aktuell, men är då mera omfattande. Små barn med läkemedelsresistent epilepsi bör tidigt remitteras till regionala epilepsiteam. Ungefär hälften av dem som opereras blir anfallsfria på lång sikt, med bättre resultat för dem som opererats för välavgränsade lesioner.
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18. |
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19. |
- Everett, K. V., et al.
(författare)
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Linkage and association analysis of CACNG3 in childhood absence epilepsy
- 2007
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Ingår i: Eur J Hum Genet. - : Springer Science and Business Media LLC. - 1018-4813 .- 1476-5438. ; 15:4, s. 463-72
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Tidskriftsartikel (refereegranskat)abstract
- Childhood absence epilepsy (CAE) is an idiopathic generalised epilepsy characterised by absence seizures manifested by transitory loss of awareness with 2.5-4 Hz spike-wave complexes on ictal EEG. A genetic component to aetiology is established but the mechanism of inheritance and the genes involved are not fully defined. Available evidence suggests that genes encoding brain expressed voltage-gated calcium channels, including CACNG3 on chromosome 16p12-p13.1, may represent susceptibility loci for CAE. The aim of this work was to further evaluate CACNG3 as a susceptibility locus by linkage and association analysis. Assuming locus heterogeneity, a significant HLOD score (HLOD = 3.54, alpha = 0.62) was obtained for markers encompassing CACNG3 in 65 nuclear families with a proband with CAE. The maximum non-parametric linkage score was 2.87 (P < 0.002). Re-sequencing of the coding exons in 59 patients did not identify any putative causal variants. A linkage disequilibrium (LD) map of CACNG3 was constructed using 23 single nucleotide polymorphisms (SNPs). Transmission disequilibrium was sought using individual SNPs and SNP-based haplotypes with the pedigree disequilibrium test in 217 CAE trios and the 65 nuclear pedigrees. Evidence for transmission disequilibrium (P < or = 0.01) was found for SNPs within a approximately 35 kb region of high LD encompassing the 5'UTR, exon 1 and part of intron 1 of CACNG3. Re-sequencing of this interval was undertaken in 24 affected individuals. Seventy-two variants were identified: 45 upstream; two 5'UTR; and 25 intronic SNPs. No coding sequence variants were identified, although four variants are predicted to affect exonic splicing. This evidence supports CACNG3 as a susceptibility locus in a subset of CAE patients.
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20. |
- Goselink, Rianne J. M., et al.
(författare)
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Transition to adult care in epilepsy: A systematic review
- 2022
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Ingår i: Seizure. - : Elsevier BV. - 1059-1311 .- 1532-2688. ; 101, s. 52-59
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Tidskriftsartikel (refereegranskat)abstract
- The transfer from paediatric to adult care can be a complex process in children with epilepsy. Inadequate care during this phase can affect long-term medical and psychosocial outcomes. The aim of this study was to review studies on transitional care from paediatric to adult healthcare for young persons with epilepsy in order to synthesize evidence for best practice. We undertook a systematic review following PRISMA guidelines and employed narrative synthesis. A total of 36 articles were included, of which 11 were interventional studies and 25 observational studies. Study quality was rated as 'good' for only four studies. Interventions included joint or multidisciplinary clinics, education (patient and health professional education) and extended service provision (Saturday clinics, peer-groups). All studies observed a positive effect experienced by the participants, regardless of intervention type. Observational studies showed that transition plans/programmes are asked for but frequently not existing or not adapted to subgroups with intellectual disability or other neurodevelopmental conditions. The results of this systematic review on transitional care in epilepsy suggest that a planned transition process likely enhances medical and psychosocial outcomes for young people with epilepsy, but the body of evidence is limited and there are significant gaps in knowledge of what efficacious transition constitutes. More studies are needed employing qualitative and quantitative methods to further explore the needs of young people with epilepsy and their families but also robust study designs to investigate the impact of interventions on medical and psychosocial outcomes.
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21. |
- Goselink, Rianne J. M., 1986, et al.
(författare)
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Transitioning from paediatric to adult care in epilepsy: A qualitative study of adolescent experiences
- 2024
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Ingår i: SEIZURE-EUROPEAN JOURNAL OF EPILEPSY. - 1059-1311 .- 1532-2688. ; 119, s. 92-97
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Transition into adulthood and adult medical care is an important step in the life of young people with epilepsy. We aimed to gain a better insight into the lived experience of the transition to adulthood and adult medical care in epilepsy in Sweden, to improve future transitional care. Methods: A cross-sectional observational study with digital focus-group meetings and interviews with young people with epilepsy (16-22 years, n = 37) prior to, or after the transfer to adult care, or their primary caregivers if they had intellectual disability. We used reflexive thematic analysis to analyse the experiences and expectations on the transition to adulthood and adult medical care. Results: The results of the thematic analysis included four key areas during transition to adulthood and adult care for young persons with epilepsy: (I) worries on coming changes and future, (II) transfers are not smooth and adult care is less integrated, (III) epilepsy is part of a bigger picture, and (IV) parental roles change. In those with intellectual disability, parents experienced a stressful process and had to increase their efforts to coordinate all care contacts in adult care. Here, epilepsy was often experienced as a minor part of a more complex disease picture, where neurodevelopmental issues were often the primary concern. Significance: Transition in epilepsy is often complex due to the large burden of co-occurring disease, specifically intellectual disability and neuropsychiatric diagnoses. Transfer to adult care is experienced as unplanned and participants experience uncertainty, indicating a need for an improved transition process. As effective interventions are known in other chronic diseases, future studies should focus on the evaluation of how these approaches can be feasible and effective in young people with epilepsy.
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22. |
- Hahne, Oscar, et al.
(författare)
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Epilepsy surgery in patients with hypothalamic hamartomas-Population-based two-year and long-term outcomes
- 2023
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Ingår i: European Journal of Paediatric Neurology. - 1090-3798. ; 46, s. 24-29
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Hypothalamic hamartomas are benign lesions associated with drug resistant epilepsy. Surgical treatment has become an increasingly utilised approach with promising results. This study aims to evaluate seizure outcome and complications after surgery in a population-based series of patients with intractable epilepsy and hypothalamic hamartoma.Methods: All patients with hypothalamic hamartoma treated with epilepsy surgery in Sweden since 1995 with at least two years of follow-up were included. Preoperative, two-, five- and ten-year prospective longitudinal data were collected from The Swedish National Epilepsy Surgery Register. Data included seizure types and frequency, duration of epilepsy, clinical characteristics, neurological deficits, cognitive level and complications. In a subgroup from Gothenburg, we also analysed data not included in the register such as classification of hamartomas, surgical procedures and gelastic seizures.Results: Eighteen patients were operated on during the period 1995-2020. The median age at epilepsy onset was 6 months and age at surgery 13 years. Four were seizure free and another four had >75% reduction in seizure frequency at the two-year follow-up. Two of the 13 patients with a long-term follow-up (five or ten years) were seizure-free and four had >75% reduction in seizure frequency. Three had an increased seizure frequency. No major complications were seen. Five had minor complications. In the Gothenburg subgroup all had open pterional disconnection or intraventricular endoscopic disconnection. Six of 12 were free from gelastic seizures at the two-year follow-up and six of eight at the long-term follow-up. Conclusion: This study supports surgical treatment of hypothalamic hamartomas as a safe method with a low risk of permanent complications. The seizure reduction seems to be persistent over time.
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23. |
- Lindehall, Birgitta, 1946, et al.
(författare)
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Complications of clean intermittent catheterization in boys and young males with neurogenic bladder dysfunction
- 2004
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Ingår i: J Urol. - 0022-5347. ; 172:4 Pt 2, s. 1686-8
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: We evaluate the risk for urethral lesions and epididymitis in boys with neurogenic bladder dysfunction treated by clean intermittent catheterization (CIC) for a minimum of 10 years. MATERIALS AND METHODS: The medical records of 28 males with neurogenic bladder dysfunction followed from the start of CIC until the age of 15 to 20 years were reviewed. RESULTS: CIC had been performed for a median of 16 years (range 10 to 21). Overall CIC was used for 438 years (265 before and 173 after puberty). During 76% of the years a noncoated polyvinyl chloride catheter with lubrication was used and in 24% of years a hydrophilic coated polyvinyl chloride catheter was used. The catheter size was 12C or greater in 43% of the cases. Independence from self-catheterization occurred during 37% of the CIC years. Of the patients 19 experienced at least 1 episode of difficulty inserting the catheter and/or had macroscopic hematuria on a total of 42 occasions. Major urethral lesions were seen on cystoscopy in 7 patients on 9 occasions (5 false passages, 1 superficial recess, 2 meatal stenoses, 1 urethral stricture). Major urethral lesions were not associated with puberty and did not occur during self-catheterization or with use of catheters 12C or greater. Epididymitis was seen in only a 12 year-old boy. CONCLUSIONS: The overall rate of complications was low. The incidence of major urethral lesions did not increase during puberty. Self-catheterization and 12C catheter or greater seemed to be protective against major lesions.
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24. |
- Lindehall, Birgitta, 1946, et al.
(författare)
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Complications of clean intermittent catheterization in young females with myelomeningocele: 10 to 19 years of followup
- 2007
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Ingår i: J Urol. - 0022-5347. ; 178:3 Pt 1, s. 1053-5
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: We evaluated the rate of complications associated with catheterization and the risk of urethral lesions in girls with myelomeningocele treated with clean intermittent catheterization for a minimum of 10 years. MATERIALS AND METHODS: We examined the medical records of 31 females with myelomeningocele followed from the start of clean intermittent catheterization until age 11 to 20 years. Catheterization had been performed for a median of 15 years (range 10 to 19). Altogether, catheterization was used for a total of 459 patient-years. Noncoated polyvinyl chloride catheters were used in all cases. Anticholinergic treatment was given during 176 of the patient-years. RESULTS: Complications of catheterization were recorded in 13 patients on 20 occasions. Macroscopic hematuria was seen in 4 individuals. In 2 patients the hematuria was caused by urethral polyps that were cured by resection. Difficulties with catheterization occurred in 12 patients. The problems were solved by temporary use of lubrication or by other minor changes in management. There were no difficulties recorded after puberty. The risk of difficulties at catheterization doubled with the use of a Ch8 to Ch10 catheter compared to a Ch12 or larger catheter, and doubled during assisted clean intermittent catheterization compared to clean intermittent self-catheterization. CONCLUSIONS: There were remarkably few problems associated with clean intermittent catheterization in these females with myelomeningocele, despite long treatment periods and use of noncoated polyvinyl chloride catheters. Clean intermittent self-catheterization and large size catheters were associated with few complications.
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25. |
- Malmgren, Kristina, 1952, et al.
(författare)
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Seizure outcome after resective epilepsy surgery in patients with low IQ.
- 2008
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Ingår i: Brain : a journal of neurology. - : Oxford University Press (OUP). - 1460-2156 .- 0006-8950. ; 131:Pt 2, s. 535-42
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Tidskriftsartikel (refereegranskat)abstract
- Epilepsy surgery has been questioned for patients with low IQ, since a low cognitive level is taken to indicate a widespread disturbance of cerebral function with unsatisfactory prognosis following resective surgery. The prevalence of epilepsy in patients with cognitive dysfunction is, however, higher than in the general population and the epilepsy is often more severe and difficult to treat. It is therefore important to try to clarify whether IQ predicts seizure outcome after resective epilepsy surgery. The Swedish National Epilepsy Surgery Register, which includes data on all epilepsy surgery procedures in Sweden since 1990, was analysed for all resective procedures performed 1990-99. Sustained seizure freedom with or without aura at the 2-year follow-up was analysed as a function of pre-operative IQ level categorized as IQ <50, IQ 50-69 and IQ >or=70 and was also adjusted for the following variables: age at epilepsy onset, age at surgery, pre-operative seizure frequency, pre-operative neurological impairment, resection type and histopathological diagnosis. Four hundred and forty-eight patients underwent resective epilepsy surgery in Sweden from 1990 to 1999 and completed the 2-year follow-up: 72 (16%) had IQ <70, (18 with IQ <50 and 54 with IQ 50-69) and 376 IQ >or=70. There were 313 adults and 135 children or=70 group. There was a significant relation between IQ category and seizure freedom [odds ratio (OR) 0.41, 95% confidence interval (CI) 0.27-0.62] and this held also when adjusting for clinical variables [OR 0.58 (95% CI 0.35-0.95)]. In this population-based epilepsy surgery series, IQ level was shown to be an independent predictor of seizure freedom at the 2-year follow-up. However, many of the low-IQ patients benefit from surgery, especially patients with lesions. Low IQ should not exclude patients from resective epilepsy surgery, but is an important prognostic factor to consider in the counselling process.
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