Pub Date : 2024-09-13DOI: 10.1016/j.pediatrneurol.2024.09.007
L. Kate Lamberta DO, Thomas R. Murray DO, Alison Gehred MLIS, Pedro Weisleder MD, PhD
Background
Positional plagiocephaly (PP) is an asymmetric deformation of the skull as a consequence of external forces acting on a normal and pliable skull. The prevalence of PP ranges between 19.6% and 46.6%. Treatment options for PP include repositioning, physical therapy, and helmet orthoses. Consensus regarding the treatment of PP remains elusive due to the condition's imprecise natural history, dissimilar diagnostic strategies, and unreliable data asserting treatments' efficacy. Our aim was to conduct a systematic review of the tools used to diagnose, suggest treatment strategies, and assess outcomes for PP.
Methods
We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to query a variety of databases. A total of 444 articles were imported into Covidence, a screening and data extraction tool for conducting systematic reviews.
Results
After a series of screenings, 60 articles met inclusion criteria and were reviewed in detail. The information was entered into a data extraction list consisting of 16 variables in the categories of general information, diagnostic strategies, treatment modalities, and treatment outcomes. Most articles reported retrospective case series, which yielded level 4 evidence. Only one article reported the results of a randomized and blinded outcomes assessment trial. Such article yielded level 1 evidence and was rated as high quality for allocation, concealment, and blinding of personnel.
Conclusion
The strategies used to diagnose and classify PP are a disparate list of measures most of which have no parallels making it impossible to offer treatment recommendations and generate generalizable knowledge.
{"title":"Helmet Therapy for Positional Plagiocephaly: A Systematic Review of the Tools Used to Diagnose, Offer Treatment Recommendations, and Assess Treatment Outcomes of the Condition","authors":"L. Kate Lamberta DO, Thomas R. Murray DO, Alison Gehred MLIS, Pedro Weisleder MD, PhD","doi":"10.1016/j.pediatrneurol.2024.09.007","DOIUrl":"10.1016/j.pediatrneurol.2024.09.007","url":null,"abstract":"<div><h3>Background</h3><div>Positional plagiocephaly (PP) is an asymmetric deformation of the skull as a consequence of external forces acting on a normal and pliable skull. The prevalence of PP ranges between 19.6% and 46.6%. Treatment options for PP include repositioning, physical therapy, and helmet orthoses. Consensus regarding the treatment of PP remains elusive due to the condition's imprecise natural history, dissimilar diagnostic strategies, and unreliable data asserting treatments' efficacy. Our aim was to conduct a systematic review of the tools used to diagnose, suggest treatment strategies, and assess outcomes for PP.</div></div><div><h3>Methods</h3><div>We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to query a variety of databases. A total of 444 articles were imported into Covidence, a screening and data extraction tool for conducting systematic reviews.</div></div><div><h3>Results</h3><div>After a series of screenings, 60 articles met inclusion criteria and were reviewed in detail. The information was entered into a data extraction list consisting of 16 variables in the categories of general information, diagnostic strategies, treatment modalities, and treatment outcomes. Most articles reported retrospective case series, which yielded level 4 evidence. Only one article reported the results of a randomized and blinded outcomes assessment trial. Such article yielded level 1 evidence and was rated as high quality for allocation, concealment, and blinding of personnel.</div></div><div><h3>Conclusion</h3><div>The strategies used to diagnose and classify PP are a disparate list of measures most of which have no parallels making it impossible to offer treatment recommendations and generate generalizable knowledge.</div></div>","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 125-131"},"PeriodicalIF":3.2,"publicationDate":"2024-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142378172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-13DOI: 10.1016/j.pediatrneurol.2024.09.008
Shiri Zarour MD , Nitzan Zohar MD , Jonathan Roth MD , Shelly I. Shiran MD , Tali Jonas Kimchi MD , Udi Sadeh-Gonik MD , Margaret Ekstein MD , Moran Hausman-Kedem MD
Background
General anesthesia poses a significant risk for patients with MMA, yet its risk in the setting of nonrevascularization procedures remains unclear. Data regarding the risk of general anesthesia for nonrevascularization procedures are scarce. We therefore aimed to assess the incidence of neurological adverse events (NAEs) among pediatric patients with MMA undergoing general anesthesia for nonrevascularization procedures.
Methods
We conducted a retrospective cohort study at a tertiary referral pediatric center of patients with MMA aged ≤18 years, who underwent general anesthesia for nonrevascularization procedures between January 2014 and July 2023. Postanesthesia NAEs were defined as occurrence of transient ischemic attacks, seizures, altered mental status, severe headache, or evidence of arterial ischemic stroke (AIS) in the 30 days postprocedure.
Results
Among 149 procedures on 38 patients (median age [interquartile range]: 8.3 [5.0, 12.7] years; 57% female), 124 (83.2%) procedures were imaging studies and angiographies and 25 (16.8%) were surgical procedures. Preprocedural hyperhydration treatment was administered before most (111, 74.5%) procedures per our institutional protocol. The incidence of postanesthesia NAEs was 0.67% (one of 149), as a result of acute AIS following a ventriculoperitoneal shunt revision surgery, in a patient with postradiation MMA, panhypopituitarism, and uncontrolled diabetes insipidus, despite preprocedural hyperhydration treatment. There were no NAEs after imaging studies performed under general anesthesia.
Conclusions
Our results suggest that general anesthesia for nonrevascularization procedures in pediatric patients with MMA prepared with hyperhydration is safe. As neuroradiological follow-up is central in children with MMA, this information can be valuable for reassuring patients and their families.
{"title":"Low Incidence of Neurological Adverse Events Among Pediatric Patients With Moyamoya Undergoing General Anesthesia for NonRevascularization Procedures","authors":"Shiri Zarour MD , Nitzan Zohar MD , Jonathan Roth MD , Shelly I. Shiran MD , Tali Jonas Kimchi MD , Udi Sadeh-Gonik MD , Margaret Ekstein MD , Moran Hausman-Kedem MD","doi":"10.1016/j.pediatrneurol.2024.09.008","DOIUrl":"10.1016/j.pediatrneurol.2024.09.008","url":null,"abstract":"<div><h3>Background</h3><div>General anesthesia poses a significant risk for patients with MMA, yet its risk in the setting of nonrevascularization procedures remains unclear. Data regarding the risk of general anesthesia for nonrevascularization procedures are scarce. We therefore aimed to assess the incidence of neurological adverse events (NAEs) among pediatric patients with MMA undergoing general anesthesia for nonrevascularization procedures.</div></div><div><h3>Methods</h3><div>We conducted a retrospective cohort study at a tertiary referral pediatric center of patients with MMA aged ≤18 years, who underwent general anesthesia for nonrevascularization procedures between January 2014 and July 2023. Postanesthesia NAEs were defined as occurrence of transient ischemic attacks, seizures, altered mental status, severe headache, or evidence of arterial ischemic stroke (AIS) in the 30 days postprocedure.</div></div><div><h3>Results</h3><div>Among 149 procedures on 38 patients (median age [interquartile range]: 8.3 [5.0, 12.7] years; 57% female), 124 (83.2%) procedures were imaging studies and angiographies and 25 (16.8%) were surgical procedures. Preprocedural hyperhydration treatment was administered before most (111, 74.5%) procedures per our institutional protocol. The incidence of postanesthesia NAEs was 0.67% (one of 149), as a result of acute AIS following a ventriculoperitoneal shunt revision surgery, in a patient with postradiation MMA, panhypopituitarism, and uncontrolled diabetes insipidus, despite preprocedural hyperhydration treatment. There were no NAEs after imaging studies performed under general anesthesia.</div></div><div><h3>Conclusions</h3><div>Our results suggest that general anesthesia for nonrevascularization procedures in pediatric patients with MMA prepared with hyperhydration is safe. As neuroradiological follow-up is central in children with MMA, this information can be valuable for reassuring patients and their families.</div></div>","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 162-166"},"PeriodicalIF":3.2,"publicationDate":"2024-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142400971","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-11DOI: 10.1016/j.pediatrneurol.2024.09.002
Mahmud Fazıl Aksakal MD , Ahmad J. Abdulsalam MD , Murat Kara MD (Professor) , Levent Özçakar MD (Professor)
{"title":"Grip Strength and Sarcopenia in Children With Cerebral Palsy: A Level Playing Field?","authors":"Mahmud Fazıl Aksakal MD , Ahmad J. Abdulsalam MD , Murat Kara MD (Professor) , Levent Özçakar MD (Professor)","doi":"10.1016/j.pediatrneurol.2024.09.002","DOIUrl":"10.1016/j.pediatrneurol.2024.09.002","url":null,"abstract":"","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Page 84"},"PeriodicalIF":3.2,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142323183","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-10DOI: 10.1016/j.pediatrneurol.2024.09.003
Himadri Patel MD , Ryan Malave MD , Sydney Bitting BS , Kaycee Weir PhD , Taylor Naus LCSW , Levi Shelton MD , Kelly W. Harris MD, MS , Wesley T. Kerr MD, PhD , Anne C. Van Cott MD , Laura Kirkpatrick MD
Background
This study aims to understand diagnosis communication experiences and preferences of youths with functional seizures and their parents.
Methods
Semistructured interviews with youths and their parents from a tertiary care children's hospital were conducted separately. We confirmed the diagnosis of functional seizures with the youth's treating providers. All interviews were audio recorded and professionally transcribed. Two coders performed thematic analysis and determined themes.
Results
Thirteen youths (aged 12 to 18) and 13 parents completed interviews separately. Themes included the following: (1) both parents and youths reported substantial fear about their symptoms, diagnosis, prognosis, and treatment options; (2) good communication skills highlighted included providing reassurance, listening, and allowing time for questions, with different preferences between youths and parents in the mode of communication; (3) poor communication for both youths and parents included use of medical jargon, brevity of communication especially with the youth, minimization of youth's symptoms, lack of apparent compassion, and lack of written materials to supplement discussions; (4) perspectives on the role of mental health in functional seizures were heterogeneous, yet concrete treatment plans were desired including access to behavioral therapy; and (5) youths and parents wanted practical guidance including plans for school and how to respond to functional seizures in all settings.
Conclusions
Youths and parents provided concrete recommendations for optimal diagnosis communication. Study findings will inform the future development of an educational intervention to improve communication and create a supportive environment for youths with functional seizures.
{"title":"Youth and Family Perspectives on Diagnosis Communication About Pediatric Functional Seizures: A Qualitative Study","authors":"Himadri Patel MD , Ryan Malave MD , Sydney Bitting BS , Kaycee Weir PhD , Taylor Naus LCSW , Levi Shelton MD , Kelly W. Harris MD, MS , Wesley T. Kerr MD, PhD , Anne C. Van Cott MD , Laura Kirkpatrick MD","doi":"10.1016/j.pediatrneurol.2024.09.003","DOIUrl":"10.1016/j.pediatrneurol.2024.09.003","url":null,"abstract":"<div><h3>Background</h3><div>This study aims to understand diagnosis communication experiences and preferences of youths with functional seizures and their parents.</div></div><div><h3>Methods</h3><div>Semistructured interviews with youths and their parents from a tertiary care children's hospital were conducted separately. We confirmed the diagnosis of functional seizures with the youth's treating providers. All interviews were audio recorded and professionally transcribed. Two coders performed thematic analysis and determined themes.</div></div><div><h3>Results</h3><div>Thirteen youths (aged 12 to 18) and 13 parents completed interviews separately. Themes included the following: (1) both parents and youths reported substantial fear about their symptoms, diagnosis, prognosis, and treatment options; (2) good communication skills highlighted included providing reassurance, listening, and allowing time for questions, with different preferences between youths and parents in the mode of communication; (3) poor communication for both youths and parents included use of medical jargon, brevity of communication especially with the youth, minimization of youth's symptoms, lack of apparent compassion, and lack of written materials to supplement discussions; (4) perspectives on the role of mental health in functional seizures were heterogeneous, yet concrete treatment plans were desired including access to behavioral therapy; and (5) youths and parents wanted practical guidance including plans for school and how to respond to functional seizures in all settings.</div></div><div><h3>Conclusions</h3><div>Youths and parents provided concrete recommendations for optimal diagnosis communication. Study findings will inform the future development of an educational intervention to improve communication and create a supportive environment for youths with functional seizures.</div></div>","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 91-98"},"PeriodicalIF":3.2,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142357641","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-10DOI: 10.1016/j.pediatrneurol.2024.09.005
Kelsey Barter MD , Siefaddeen Sharayah MD , Urmi Mange BA, Cristina M. Gaudioso MD, Natalie Schanzer BA, Connor Keuchel BA, Rachel Zolno MD, Soe Mar MD
Background
Evidence suggests a prodromal phase in multiple sclerosis (MS), with increased health care use preceding the first demyelinating event (FDE). Although prior studies have explored this in adults, limited data exist for pediatric cases. We aimed to analyze health care utilization and prodromal symptoms in the two years before FDE in patients with pediatric-onset MS (POMS).
Methods
From 122 patients at the Pediatric Multiple Sclerosis & Demyelinating Diseases Center at Washington University School of Medicine from 2011 to 2021, 37 POMS cases were identified. Of these, 21 with at least two years of records preceding FDE were included. Retrospective analysis covered symptoms and health care utilization in the two-year period before FDE, including ambulatory visits, hospital admissions, and office calls.
Results
Patients showed increased health care utilization in the year preceding FDE (period B; 96 interactions) compared with the prior year (period A; 77 interactions) and an increase in the percentage of neurology-related encounters (P < 0.001). There was an increase in all office calls from period A to period B (P = 0.01). Neurological complaints included headaches (28.6%), visual (19.0%), sensory (14.3%), and balance (14.3%) in the two years before FDE, and 28.6% of patients presented for psychiatric complaints. Common non-neurological complaints included infection, dermatologic, and musculoskeletal issues and injury.
Conclusions
Our POMS cohort showed increased health care use before FDE, consistent with population-based data. This study emphasizes diverse symptoms in prodromal POMS, with headaches being the most common neurological symptom in the two-year period before FDE.
{"title":"The Multiple Sclerosis Prodrome in a Retrospective Pediatric Cohort","authors":"Kelsey Barter MD , Siefaddeen Sharayah MD , Urmi Mange BA, Cristina M. Gaudioso MD, Natalie Schanzer BA, Connor Keuchel BA, Rachel Zolno MD, Soe Mar MD","doi":"10.1016/j.pediatrneurol.2024.09.005","DOIUrl":"10.1016/j.pediatrneurol.2024.09.005","url":null,"abstract":"<div><h3>Background</h3><div>Evidence suggests a prodromal phase in multiple sclerosis (MS), with increased health care use preceding the first demyelinating event (FDE). Although prior studies have explored this in adults, limited data exist for pediatric cases. We aimed to analyze health care utilization and prodromal symptoms in the two years before FDE in patients with pediatric-onset MS (POMS).</div></div><div><h3>Methods</h3><div>From 122 patients at the Pediatric Multiple Sclerosis & Demyelinating Diseases Center at Washington University School of Medicine from 2011 to 2021, 37 POMS cases were identified. Of these, 21 with at least two years of records preceding FDE were included. Retrospective analysis covered symptoms and health care utilization in the two-year period before FDE, including ambulatory visits, hospital admissions, and office calls.</div></div><div><h3>Results</h3><div>Patients showed increased health care utilization in the year preceding FDE (period B; 96 interactions) compared with the prior year (period A; 77 interactions) and an increase in the percentage of neurology-related encounters (<em>P</em> < 0.001). There was an increase in all office calls from period A to period B (<em>P</em> = 0.01). Neurological complaints included headaches (28.6%), visual (19.0%), sensory (14.3%), and balance (14.3%) in the two years before FDE, and 28.6% of patients presented for psychiatric complaints. Common non-neurological complaints included infection, dermatologic, and musculoskeletal issues and injury.</div></div><div><h3>Conclusions</h3><div>Our POMS cohort showed increased health care use before FDE, consistent with population-based data. This study emphasizes diverse symptoms in prodromal POMS, with headaches being the most common neurological symptom in the two-year period before FDE.</div></div>","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 144-148"},"PeriodicalIF":3.2,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142392414","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-07DOI: 10.1016/j.pediatrneurol.2024.08.012
Natalie K. Field BS , Hannah C. Glass MDCM, MAS , Linda S. Franck RN, PhD , Renée A. Shellhaas MD, MS , Justin Means , Monica E. Lemmon MD , Neonatal Seizure Registry
{"title":"A Novel Question Prompt List for Parents of Neonates With Seizures","authors":"Natalie K. Field BS , Hannah C. Glass MDCM, MAS , Linda S. Franck RN, PhD , Renée A. Shellhaas MD, MS , Justin Means , Monica E. Lemmon MD , Neonatal Seizure Registry","doi":"10.1016/j.pediatrneurol.2024.08.012","DOIUrl":"10.1016/j.pediatrneurol.2024.08.012","url":null,"abstract":"","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 64-66"},"PeriodicalIF":3.2,"publicationDate":"2024-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142239861","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-07DOI: 10.1016/j.pediatrneurol.2024.08.009
Lena-Luise Becker MD , Karen Agricola MS, FNP , David M. Ritter MD, PhD , Darcy A. Krueger MD, PhD , David Neal Franz MD
Background
Everolimus therapy has been approved in Tuberous Sclerosis Complex (TSC), for drug-resistant epilepsy as adjunctive therapy. A novel anti-seizure medication is cenobamate, which was approved for adults as adjunctive treatment for focal-onset seizures in drug-resistant epilepsy and is now commonly used in patients with TSC. Drug-drug interactions between cenobamate and mammalian target of rapamycin (mTORi) have not been prospectively evaluated, even though these agents are frequently administered together.
Methods
We performed a retrospective analysis of patients with TSC and compared mTORi drug levels before and after treatment initiation with cenobamate.
Results
We evaluated 20 patients with clinically diagnosed TSC (male: 55%, female: 45%) with a median current age at last visit of 17.0 years (range: 4-41 years, interquartile range [IQR]: 12.5 years). All patients received mTORi treatment of either everolimus (N = 12, 60%) or sirolimus (N = 8, 40%). Cenobamate treatment led to seizure freedom in 2 patients (10%), reduction of seizures in 9 patients (45%) and no change in seizure frequency in 9 patients (45%). Median maximal cenobamate dose was 200 mg (range: 100-500 mg, IQR: 262.5 mg), for example, 3.2 mg/kg/day (range: 0.8-9.5 mg/kg/day, IQR: 3.2 mg/kg/day). Median everolimus levels decreased significantly after cenobamate initiation from 5.1 ng/ml (range: 1.9-11.6 ng/ml, IQR: 3.8 ng/ml) to 3.4 ng/ml (range: 1-7.9 ng/ml, IQR: 1.7 ng/ml, P = 0.01221). The median sirolimus level did not decrease significantly (P = 0.3828).
Conclusion
Everolimus levels decreased following cenobamate initiation. This is likely due to CYP3A4 induction of cenobamate. We recommend monitoring of serum plasma levels of mTORi co-administered with cenobamate and adjustment of mTORi doses accordingly.
{"title":"Mammalian Target of Rapamycin Inhibitor Levels Decrease Under Cenobamate Treatment","authors":"Lena-Luise Becker MD , Karen Agricola MS, FNP , David M. Ritter MD, PhD , Darcy A. Krueger MD, PhD , David Neal Franz MD","doi":"10.1016/j.pediatrneurol.2024.08.009","DOIUrl":"10.1016/j.pediatrneurol.2024.08.009","url":null,"abstract":"<div><h3>Background</h3><p>Everolimus therapy has been approved in Tuberous Sclerosis Complex (TSC), for drug-resistant epilepsy as adjunctive therapy. A novel anti-seizure medication is cenobamate, which was approved for adults as adjunctive treatment for focal-onset seizures in drug-resistant epilepsy and is now commonly used in patients with TSC. Drug-drug interactions between cenobamate and mammalian target of rapamycin (mTORi) have not been prospectively evaluated, even though these agents are frequently administered together.</p></div><div><h3>Methods</h3><p>We performed a retrospective analysis of patients with TSC and compared mTORi drug levels before and after treatment initiation with cenobamate.</p></div><div><h3>Results</h3><p>We evaluated 20 patients with clinically diagnosed TSC (male: 55%, female: 45%) with a median current age at last visit of 17.0 years (range: 4-41 years, interquartile range [IQR]: 12.5 years). All patients received mTORi treatment of either everolimus (N = 12, 60%) or sirolimus (N = 8, 40%). Cenobamate treatment led to seizure freedom in 2 patients (10%), reduction of seizures in 9 patients (45%) and no change in seizure frequency in 9 patients (45%). Median maximal cenobamate dose was 200 mg (range: 100-500 mg, IQR: 262.5 mg), for example, 3.2 mg/kg/day (range: 0.8-9.5 mg/kg/day, IQR: 3.2 mg/kg/day). Median everolimus levels decreased significantly after cenobamate initiation from 5.1 ng/ml (range: 1.9-11.6 ng/ml, IQR: 3.8 ng/ml) to 3.4 ng/ml (range: 1-7.9 ng/ml, IQR: 1.7 ng/ml, <em>P</em> = 0.01221). The median sirolimus level did not decrease significantly (<em>P</em> = 0.3828).</p></div><div><h3>Conclusion</h3><p>Everolimus levels decreased following cenobamate initiation. This is likely due to CYP3A4 induction of cenobamate. We recommend monitoring of serum plasma levels of mTORi co-administered with cenobamate and adjustment of mTORi doses accordingly.</p></div>","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 73-75"},"PeriodicalIF":3.2,"publicationDate":"2024-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142271320","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-07DOI: 10.1016/j.pediatrneurol.2024.08.007
Natalie K. Field BS , Linda S. Franck PhD, RN , Renée A. Shellhaas MD, MS , Hannah C. Glass MD, MAS , Kathleen A. Young BA , Saisha Dhar , Ashley Hamlett MEd , Betsy Pilon BA , Katie Means , Janet S. Soul MDCM , Shavonne L. Massey MD, MSCE , Courtney J. Wusthoff MD , Catherine J. Chu MD, MSC , Cameron Thomas MD, MS , Elizabeth Rogers MD , Madison M. Berl PhD , Giulia M. Benedetti MD , Tayyba Anwar MD , Monica E. Lemmon MD , Neonatal Seizure Registry
Background
Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood.
Methods
This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (NSR) sites in partnership with the NSR Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used.
Results
A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (n = 142), 12 months (n = 169), 18 months (n = 208), and 24 months (n = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow.
Conclusions
Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers’ psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.
{"title":"Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience","authors":"Natalie K. Field BS , Linda S. Franck PhD, RN , Renée A. Shellhaas MD, MS , Hannah C. Glass MD, MAS , Kathleen A. Young BA , Saisha Dhar , Ashley Hamlett MEd , Betsy Pilon BA , Katie Means , Janet S. Soul MDCM , Shavonne L. Massey MD, MSCE , Courtney J. Wusthoff MD , Catherine J. Chu MD, MSC , Cameron Thomas MD, MS , Elizabeth Rogers MD , Madison M. Berl PhD , Giulia M. Benedetti MD , Tayyba Anwar MD , Monica E. Lemmon MD , Neonatal Seizure Registry","doi":"10.1016/j.pediatrneurol.2024.08.007","DOIUrl":"10.1016/j.pediatrneurol.2024.08.007","url":null,"abstract":"<div><h3>Background</h3><div>Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood.</div></div><div><h3>Methods</h3><div>This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (<em>NSR</em>) sites in partnership with the <em>NSR</em> Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used.</div></div><div><h3>Results</h3><div>A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (<em>n</em> = 142), 12 months (<em>n</em> = 169), 18 months <em>(n</em> = 208), and 24 months (<em>n</em> = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow.</div></div><div><h3>Conclusions</h3><div>Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers’ psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.</div></div>","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 76-83"},"PeriodicalIF":3.2,"publicationDate":"2024-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142311525","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-09-07DOI: 10.1016/j.pediatrneurol.2024.08.008
Richard B. Carozza MD, MS , Femke Horn MD, DPT, MA , Emma G. Carter MD , Jamie N. Colombo DO , Michael T. Froehler MD, PhD , Lori C. Jordan MD, PhD
{"title":"Bilateral Mechanical Thrombectomy in a Child With Single-Ventricle Congenital Heart Disease and Protein-Losing Enteropathy","authors":"Richard B. Carozza MD, MS , Femke Horn MD, DPT, MA , Emma G. Carter MD , Jamie N. Colombo DO , Michael T. Froehler MD, PhD , Lori C. Jordan MD, PhD","doi":"10.1016/j.pediatrneurol.2024.08.008","DOIUrl":"10.1016/j.pediatrneurol.2024.08.008","url":null,"abstract":"","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 40-42"},"PeriodicalIF":3.2,"publicationDate":"2024-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142168439","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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