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1. Acute flaccid myelitis: cause, diagnosis, and management

Author

Murphy, Olwen C, Messacar, Kevin, Benson, Leslie, Bove, Riley, Carpenter, Jessica L, Crawford, Thomas, Dean, Janet, DeBiasi, Roberta, Desai, Jay, Elrick, Matthew J, Farias-Moeller, Raquel, Gombolay, Grace Y, Greenberg, Benjamin, Harmelink, Matthew, Hong, Sue, Hopkins, Sarah E, Oleszek, Joyce, Otten, Catherine, Sadowsky, Cristina L, Schreiner, Teri L, Thakur, Kiran T, Van Haren, Keith, Carballo, Carolina M, Chong, Pin Fee, Fall, Amary, Gowda, Vykuntaraju K, Helfferich, Jelte, Kira, Ryutaro, Lim, Ming, Lopez, Eduardo L, Wells, Elizabeth M, Yeh, E Ann, Pardo, Carlos A, group, AFM working, Salazar-Camelo, Andrea, Mithal, Divakar, Wilson-Murphy, Molly, Bauer, Andrea, Watkins, Colyn, Abzug, Mark, Dominguez, Samuel, Press, Craig, Yang, Michele, Ahsan, Nusrat, Ramos-Platt, Leigh, Tiongson, Emmanuelle, Seruya, Mitchel, Tilton, Ann, Katz, Elana, Kirschen, Matthew, Shah, Apurva, Ulloa, Erlinda, Yum, Sabrina, Mondok, Lileth, Blaufuss, Megan, Rosenfeld, Amy, Vargas, Wendy, Zucker, Jason, Yeshokumar, Anusha, Navis, Allison, Chao, Kristen, Hagen, Kaitlin, Melicosta, Michelle, Porter, Courtney, Tunney, Margaret, Scheuermann, Richard, Duggal, Priya, Pekosz, Andrew, Bayliss, Amy, Moore, Meghan, Belzberg, Allan, Bembea, Melania, O'Brien, Caitlin, Riggs, Rebecca, Nance, Jessica, Milstone, Aaron, Rice, Jessica, Garcia-Dominguez, Maria A, Flanagan, Eoin, Tillema, Jan-Mendelt, Bosques, Glendaliz, Bhatia, Sonal, Gordon-Lipkin, Eliza, Deike, Dawn, Revivo, Gadi, Zlotolow, Dan, deFiebre, Gabrielle, Lazerow, Peggy, Lotze, Timothy, Bitnun, Ari, Davidge, Kristen, Vajsar, Jiri, Moore, Amy, Konersman, Chamindra, Nash, Kendall, Strober, Jonathan, Gupta, Nalin, Chiu, Charles, Sweeney, Michael, and Jackson, William

Subjects
Biomedical and Clinical Sciences, Clinical Sciences, Health Sciences, Infectious Diseases, Rehabilitation, Rare Diseases, Neurosciences, Infection, Good Health and Well Being, Central Nervous System Viral Diseases, Child, Enterovirus Infections, Global Health, Humans, Magnetic Resonance Imaging, Muscle Hypotonia, Muscle Weakness, Myelitis, Neuromuscular Diseases, Patient Outcome Assessment, AFM working group, Medical and Health Sciences, General & Internal Medicine, Biomedical and clinical sciences, Health sciences
Abstract

Acute flaccid myelitis (AFM) is a disabling, polio-like illness mainly affecting children. Outbreaks of AFM have occurred across multiple global regions since 2012, and the disease appears to be caused by non-polio enterovirus infection, posing a major public health challenge. The clinical presentation of flaccid and often profound muscle weakness (which can invoke respiratory failure and other critical complications) can mimic several other acute neurological illnesses. There is no single sensitive and specific test for AFM, and the diagnosis relies on identification of several important clinical, neuroimaging, and cerebrospinal fluid characteristics. Following the acute phase of AFM, patients typically have substantial residual disability and unique long-term rehabilitation needs. In this Review we describe the epidemiology, clinical features, course, and outcomes of AFM to help to guide diagnosis, management, and rehabilitation. Future research directions include further studies evaluating host and pathogen factors, including investigations into genetic, viral, and immunological features of affected patients, host-virus interactions, and investigations of targeted therapeutic approaches to improve the long-term outcomes in this population.

Published
2021

3. Acute flaccid myelitis: cause, diagnosis, and management

Author

Salazar-Camelo, Andrea, Mithal, Divakar, Wilson-Murphy, Molly, Bauer, Andrea, Watkins, Colyn, Abzug, Mark, Dominguez, Samuel, Press, Craig, Yang, Michele, Ahsan, Nusrat, Ramos-Platt, Leigh, Tiongson, Emmanuelle, Seruya, Mitchel, Tilton, Ann, Katz, Elana, Kirschen, Matthew, Shah, Apurva, Ulloa, Erlinda, Yum, Sabrina, Mondok, Lileth, Blaufuss, Megan, Rosenfeld, Amy, Vargas, Wendy, Zucker, Jason, Yeshokumar, Anusha, Navis, Allison, Chao, Kristen, Hagen, Kaitlin, Melicosta, Michelle, Porter, Courtney, Tunney, Margaret, Scheuermann, Richard, Duggal, Priya, Pekosz, Andrew, Bayliss, Amy, Moore, Meghan, Belzberg, Allan, Bembea, Melania, O'Brien, Caitlin, Riggs, Rebecca, Nance, Jessica, Milstone, Aaron, Rice, Jessica, Garcia-Dominguez, Maria A., Flanagan, Eoin, Tillema, Jan-Mendelt, Bosques, Glendaliz, Bhatia, Sonal, Gordon-Lipkin, Eliza, Deike, Dawn, Revivo, Gadi, Zlotolow, Dan, deFiebre, Gabrielle, Lazerow, Peggy, Lotze, Timothy, Bitnun, Ari, Davidge, Kristen, Vajsar, Jiri, Moore, Amy, Konersman, Chamindra, Nash, Kendall, Strober, Jonathan, Gupta, Nalin, Chiu, Charles, Sweeney, Michael, Jackson, William, Simon, Dennis, Thakkar, Kavita, Cheng, Jonathan, Luce, John, Das, Suman, Vogt, Matthew, Vu, NgocHanh, Gofshteyn, Jacqueline, Makhani, Naila, Patel, Payal, Murphy, Olwen C, Messacar, Kevin, Benson, Leslie, Bove, Riley, Carpenter, Jessica L, Crawford, Thomas, Dean, Janet, DeBiasi, Roberta, Desai, Jay, Elrick, Matthew J, Farias-Moeller, Raquel, Gombolay, Grace Y, Greenberg, Benjamin, Harmelink, Matthew, Hong, Sue, Hopkins, Sarah E, Oleszek, Joyce, Otten, Catherine, Sadowsky, Cristina L, Schreiner, Teri L, Thakur, Kiran T, Van Haren, Keith, Carballo, Carolina M, Chong, Pin Fee, Fall, Amary, Gowda, Vykuntaraju K, Helfferich, Jelte, Kira, Ryutaro, Lim, Ming, Lopez, Eduardo L, Wells, Elizabeth M, Yeh, E Ann, and Pardo, Carlos A

Published
2021
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4. Individualized Care Delivery for Children With Autism and Related Disabilities Undergoing Overnight Video Electroencephalography (EEG): One Hospital's Experience With a Coordinated Team Approach.

Author

Nix, Kalyn, Siegel, Atara, Smith, Jessica V., Wells, Elizabeth M., and Atmore, Kathleen

Subjects
AUTISTIC children, CHILDREN with developmental disabilities, AUTISM in children, CHILD care, ELECTROENCEPHALOGRAPHY, GENERAL anesthesia, DISABILITIES
Abstract

Background and Purpose: Children with developmental disabilities have increased risk of epilepsy and need for overnight video electroencephalographic (EEG) monitoring. However, video EEGs have historically been considered difficult to complete for this population. An autism support service at a pediatric tertiary care hospital implemented a coordinated team approach to help children with developmental disability tolerate overnight video EEGs. The project included completion of a caregiver-report preprocedure questionnaire that then was shared with the multidisciplinary team and used to create individualized care plans. The current study aims to describe rates of video EEG completion and need for lead placement under general anesthesia among children with autism and related disabilities who received these supports. Methods: Rates of video EEG completion and general anesthesia use were analyzed for children referred to the support service between April 2019 and November 2021. Results: A total of 182 children with developmental disability (mean age = 10.3 years, 54.9% diagnosed with autism) met inclusion criteria. 92.9% (n = 169) of children successfully completed EEG (leads on ≥12 hours). Only 19.2% (n = 35) required general anesthesia for video EEG lead placement. The majority (80.2%) of parents (n = 146) completed the preprocedure questionnaire. Video EEG outcomes did not differ based on completion of the questionnaire. Parent-reported challenges with communication and cooperation were associated with shorter video EEG duration and greater use of general anesthesia. Conclusions: These findings suggest that most children with developmental disability can complete video EEG with sufficient support. Preprocedure planning can identify children who would benefit from additional accommodations. Further research is necessary to clarify which supports are most helpful. [ABSTRACT FROM AUTHOR]

Published
2024
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5. Temporal patterns in the risk of chronic health conditions in survivors of childhood cancer diagnosed 1970–99: a report from the Childhood Cancer Survivor Study cohort

Author

Gibson, Todd M, Mostoufi-Moab, Sogol, Stratton, Kayla L, Leisenring, Wendy M, Barnea, Dana, Chow, Eric J, Donaldson, Sarah S, Howell, Rebecca M, Hudson, Melissa M, Mahajan, Anita, Nathan, Paul C, Ness, Kirsten K, Sklar, Charles A, Tonorezos, Emily S, Weldon, Christopher B, Wells, Elizabeth M, Yasui, Yutaka, Armstrong, Gregory T, Robison, Leslie L, and Oeffinger, Kevin C

Published
2018
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8. Glial Fibrillary Acidic Protein (GFAP) Astrocytopathy: An Emerging Cause of Meningoencephalomyelitis in Children and Adolescents.

Author

Uppal, Prayerna, Smith, Jacklyn, Castillo-Pinto, Carlos, Wells, Elizabeth M., Jayakar, Anuj, and Harrar, Dana

Subjects
GLIAL fibrillary acidic protein, CEREBROSPINAL fluid, MAGNETIC resonance imaging, TEENAGERS, ESSENTIAL tremor
Abstract

Introduction: We describe 5 children with GFAP astrocytopathy with the goal of further characterizing this rare form of meningoencephalomyelitis. Methods: Retrospective chart review of patients diagnosed with GFAP astrocytopathy between 2019 and 2021. Results: Patients were 8-17 years old, and all were male. Fever, headache, and vomiting were common presenting symptoms, and weakness, tremor, and ataxia were common initial examination findings. Initial magnetic resonance imaging (MRI) showed spinal cord abnormalities in 2 patients and leptomeningeal enhancement in 1. Most patients had cerebral spinal fluid pleocytosis, and all screened negative for malignancy. Three patients progressed to coma, and all were treated with immunosuppressant therapy. By discharge, all patients had improved over their clinical nadir, although none had returned to baseline. Discussion: GFAP astrocytopathy is a recently recognized cause of meningoencephalomyelitis in children. Here, we expand our understanding of this entity with the goal of aiding those treating children with GFAP astrocytopathy. [ABSTRACT FROM AUTHOR]

Published
2023
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12. The Cerebellar Mutism Syndrome and Its Relation to Cerebellar Cognitive Function and the Cerebellar Cognitive Affective Disorder

Author

Wells, Elizabeth M., Walsh, Karin S., and Khademian, Zarir P.

Abstract

The postoperative cerebellar mutism syndrome (CMS), consisting of diminished speech output, hypotonia, ataxia, and emotional lability, occurs after surgery in up to 25% of patients with medulloblastoma and occasionally after removal of other posterior fossa tumors. Although the mutism is transient, speech rarely normalizes and the syndrome is associated with long-term adverse neurological, cognitive, and psychological sequelae. The clinical, neuroradiographic, and neuropsychological findings associated with CMS as well as possible mechanisms of injury are reviewed. Theories about the pathophysiology of CMS have evolved along with our understanding of the cerebellum as an important structure in the distributive neurocircuitry underlying complex speech, cognition, and behavior. CMS shares many similarities with the cerebellar cognitive affective syndrome, more commonly described in adults and consisting of disturbances of executive function, visuospatial skills, nonmotor language, and affect regulation. Future directions include more thorough neuropsychological characterization, functional and diffusion tensor imaging studies, and investigations into the underlying differences that may make some patients more vulnerable to CMS.

Published
2008
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14. Contributors

Author

Aaen, Gregory S., primary, Abend, Nicholas Scott, additional, Abou-Hamden, Amal, additional, Allen, Jeffrey C., additional, Amato, Anthony A., additional, Amlie-Lefond, Catherine, additional, Ashwal, Stephen, additional, Bailey, Russell C., additional, Bale, James F., additional, Banwell, Brenda, additional, Barañano, Kristin W., additional, Barkovich, A. James, additional, Barohn, Richard J., additional, Bartels, Ute K., additional, Bartnik-Olson, Brenda, additional, Barzilai, Ori, additional, Bassuk, Alexander, additional, Bearden, David R., additional, Ben-Sira, Liat, additional, Bernard, Timothy J., additional, Berry-Kravis, Elizabeth, additional, Beslow, Lauren A., additional, Biegel, Jaclyn A., additional, Billinghurst, Lori, additional, Birnbaum, Angela K., additional, Blackburn, Joanna S., additional, Bobowski, Nuala, additional, Boire, Adrienne, additional, Bönnemann, Carsten G., additional, Bonifacio, Sonia L., additional, Bonthius, Daniel J., additional, Borcherding, Breck, additional, Branchford, Brian R., additional, Brandsema, John, additional, Brennan, Kathryn M., additional, Brenton, J. Nicholas, additional, Brooks-Kayal, Amy R., additional, Brown, Lawrence W., additional, Buchalter, Jeffrey, additional, Camfield, Carol S., additional, Camfield, Peter R., additional, Campoy, Cristina, additional, Carpenter, Jessica L., additional, Chang, Taeun, additional, Chau, Vann, additional, Chi, Susan N., additional, Chiriboga, Claudia A., additional, Cho, Yoon-Jae, additional, Christian, Cindy W., additional, Chrestian, Nicholas, additional, Cilio, Maria Roberta, additional, Clark, Robin D., additional, Cohen, Bruce H., additional, Cohn, Ronald D., additional, Connolly, Anne M., additional, Constable, Todd, additional, Constantini, Shlomi, additional, Conway, Jeannine M., additional, Coulter, David L., additional, Cowan, Tina M., additional, Dale, Russell C., additional, Darbro, Benjamin, additional, Darras, Basil T., additional, Dastgir, Jahannaz, additional, De Meirleir, Linda, additional, De Vivo, Darryl C., additional, de Vries, Linda S., additional, Deisch, Jeremy K., additional, Deltenre, Paul, additional, Desai, Jay, additional, Descartes, Maria, additional, deVeber, Gabrielle, additional, Dhamne, Sameer C., additional, Diaz, Jullianne, additional, DiMauro, Salvatore, additional, Dobyns, William B., additional, Doherty, Dan, additional, Donner, Elizabeth J., additional, Dosenbach, Nico U.F., additional, Dowling, James J., additional, Drake, James M., additional, Ejerskov, Cecile, additional, Engel, Andrew G., additional, Enns, Gregory M., additional, Escolano-Margarit, María Victoria, additional, Etzion, Iris, additional, Fatemi, S. Ali, additional, Fehlings, Darcy L., additional, Feinberg, Michelle Lauren, additional, Ferriero, Donna M., additional, Filipek, Pauline A., additional, Finkel, Richard S., additional, Fisher, Paul G., additional, Flanigan, Kevin, additional, Foreman, Nicholas K., additional, Franco, Israel, additional, Frank, Yitzchak, additional, Fredrick, Douglas R., additional, Freeze, Hudson H., additional, Fuente-Mora, Cristina, additional, Furman, Joseph M., additional, Gallagher, Renata C., additional, Garel, Catherine, additional, Gertsch, Emily, additional, Gilbert, Donald L., additional, Gilles, Elizabeth E., additional, Giza, Christopher C., additional, Glaser, Carol A., additional, Glass, Hannah C., additional, Glauser, Tracy, additional, Glykys, Joseph, additional, Goldstein, Amy, additional, Gonorazky, Hernan Dario, additional, Gonzalez, Rodolfo, additional, Goodkin, Howard P., additional, Graham, John M., additional, Greninger, Alexander L., additional, Gronseth, Gary, additional, Gropman, Andrea L., additional, Grundy, Richard, additional, Guerrini, Renzo, additional, Gupta, Nalin, additional, Hahn, Jin S., additional, Hamblin, Milton H., additional, Hani, Abeer J., additional, Hanmantgad, Sharyu, additional, Harbert, Mary J., additional, Harini, Chellamani, additional, Harriott, Andrea M., additional, Heatwole, Chad, additional, Hershey, Andrew D., additional, Hirtz, Deborah G., additional, Holmes, Gregory L., additional, Holshouser, Barbara A., additional, Hurwitz, Kathleen A., additional, Hwang, Eugene, additional, Ichord, Rebecca N., additional, Jafar-Nejad, Paymaan, additional, Jain, Sejal V., additional, Jordan, Lori, additional, Kabbouche, Marielle A., additional, Kacperski, Joanne, additional, Kang, Peter B., additional, Kariannis, Matthias A., additional, Kaufmann, Horacio, additional, Kaye, Harper L., additional, Keating, Robert, additional, Kennedy, Colin R., additional, Khakoo, Yasmin, additional, Kirton, Adam, additional, Kissel, John T., additional, Knupp, Kelly G., additional, Korf, Bruce R., additional, Kossoff, Eric H., additional, Kothare, Sanjeev V., additional, Kupfer, Oren, additional, LaFrance, W. Curt, additional, Latal, Beatrice, additional, Leber, Steven M., additional, Lee, Jean-Pyo, additional, Leppik, Ilo E., additional, Lerman-Sagie, Tally, additional, Lerner, Jason T., additional, Leventer, Richard J., additional, Licht, Daniel J., additional, Lichter-Konecki, Uta, additional, Lidar, Zvi, additional, Liem, Djin Gie, additional, Loddenkemper, Tobias, additional, Long, Roger K., additional, Luc, Quyen N., additional, Mackay, Mark, additional, Majnemer, Annette, additional, Makhani, Naila, additional, Malinger, Gustavo, additional, Mandelbaum, David E., additional, Maricich, Stephen M., additional, Maski, Kiran P., additional, Mathur, Mudit, additional, Matthews, Dennis J., additional, McMahon, Kelly, additional, DeMara-Hoth, Megan B., additional, Mendelsohn, Bryce, additional, Mennella, Julie A., additional, Ment, Laura R., additional, Mercuri, Eugenio, additional, Michelson, David J., additional, Mikati, Mohamad A., additional, Mikhail, Fady M., additional, Miller, Steven Paul, additional, Milunsky, Jeff M., additional, Mink, Jonathan W., additional, Mirzaa, Ghayda M., additional, Mitchell, Wendy G., additional, Mohan, Michael A., additional, Mohassel, Payam, additional, Moharir, Mahendranath, additional, Monani, Umrao R., additional, Monje Deisseroth, Michelle, additional, Moodley, Manikum, additional, Mower, Andrew, additional, Moxley, Richard T., additional, Mueller, Sabine, additional, Muotri, Alysson R., additional, Nagamani, Sandesh C.S., additional, Narayanan, Mohan J., additional, Narayanan, Vinodh, additional, Nass, Ruth D., additional, Neul, Jeffrey L., additional, Nevo, Yoram, additional, Ng, Bobby G., additional, Nickels, Katherine C., additional, Nimmo, Graeme A.M., additional, Noetzel, Michael J., additional, Norcliffe-Kaufmann, Lucy, additional, Nordli, Douglas R., additional, Nowak-Göttl, Ulrike, additional, O'Brien, Hope L., additional, Oleszek, Joyce, additional, Oskoui, Maryam, additional, Paciorkowski, Alex R., additional, Packer, Roger J., additional, Packman, Seymour, additional, Palma, Jose-Alberto, additional, Pardo, Andrea C., additional, Parsons, Julie A., additional, Partridge, John Colin, additional, Pastores, Gregory M., additional, Patterson, Marc C., additional, Pearce, William J., additional, Pearl, Phillip L., additional, Penner, Melanie, additional, Percival, Leila, additional, Pereira, Marcia, additional, Pfister, Stefan M., additional, Phillips, John, additional, Plecko, Barbara, additional, Plioplys, Sigita, additional, Poduri, Annapurna, additional, Poisson, Sharon, additional, Pomeroy, Scott L., additional, Poretti, Andrea, additional, Powers, Scott W., additional, Pranzatelli, Michael R., additional, Przekop, Allison, additional, Rabie, Malcolm, additional, Rangasamy, Sampathkumar, additional, Raymond, Gerald V., additional, Reddy, Alyssa T., additional, Rendleman, Rebecca L., additional, Rho, Jong M., additional, Rodan, Lance H., additional, Roddy, Sarah M., additional, Rogers, Elizabeth E., additional, Rosenthal, Stephen M., additional, Rosman, N. Paul, additional, Ross, M. Elizabeth, additional, Rotenberg, Alexander, additional, Rust, Robert S., additional, Sanchez, Cheryl P., additional, Sanchez, Pedro, additional, Sánchez Fernández, Iván, additional, Sands, Tristan T., additional, Sanger, Terence D., additional, Sannagowdara, Kumar, additional, Scheinost, Dustin, additional, Scher, Mark S., additional, Schor, Nina F., additional, Schrauwen, Isabelle, additional, Segal, Michael M., additional, Seinfeld, Syndi, additional, Selcen, Duygu, additional, Seltzer, Laurie E., additional, Semrud-Clikeman, Margaret, additional, Shaw, Dennis W., additional, Shaywitz, Bennett A., additional, Shaywitz, Sally E., additional, Shellhaas, Renée A., additional, Sherr, Elliott H., additional, Sheth, Rita D., additional, Shevell, Michael I., additional, Shinnar, Shlomo, additional, Shofty, Ben, additional, Shu, Stanford K., additional, Shy, Michael E., additional, Silveira Moriyama, Laura, additional, Silvestri, Nicholas J., additional, Sims, Katherine B., additional, Singer, Harvey S., additional, Singhal, Nilika Shah, additional, Smith, Craig M., additional, Smith, Edward, additional, Smith, Stephen A., additional, Snyder, Evan Y., additional, Soul, Janet, additional, Spalink, Christy L., additional, Spencer, Karen A., additional, Stafstrom, Carl E., additional, Steinfeld, Robert, additional, Strober, Jonathan B., additional, Sullivan, Joseph, additional, Swaiman, Kenneth F., additional, Swoboda, Kathryn J., additional, Tate, Elizabeth D., additional, Tatum, William O., additional, Tein, Ingrid, additional, Tekulve, Kristyn, additional, Tenney, Jeffrey R., additional, Thiele, Elizabeth A., additional, Thompson-Stone, Robert, additional, Tochen, Laura, additional, Tormoehlen, Laura M., additional, Tran, Lily, additional, Trauner, Doris A., additional, Turnacioglu, Sinan O., additional, Ullrich, Nicole J., additional, Urion, David K., additional, Van Camp, Guy, additional, Van Hirtum-Das, Michèle, additional, van Karnebeek, Clara D.M., additional, Van Maldergem, Lionel, additional, Vanderver, Adeline, additional, Vitanza, Nicholas A., additional, von Rhein, Michael, additional, von Scheven, Emily, additional, Wagner, Ann, additional, Wainwright, Mark S., additional, Walker, Melissa A., additional, Walkup, John T., additional, Walsh, Laurence, additional, Walters-Sen, Lauren C., additional, Wang, Raymond Y., additional, Warner, Thomas T., additional, Whelan, Harry T., additional, Weinberg, Geoffrey A., additional, Wells, Elizabeth M., additional, Wheless, James W., additional, Wirrell, Elaine C., additional, Wisoff, Jeffrey H., additional, Wolf, Nicole I., additional, Wolfe, Gil I., additional, Wright, F. Virginia, additional, Wycliffe, Nathaniel D., additional, Yang, Michele L., additional, Yuskaitis, Christopher J., additional, Zoghbi, Huda Y., additional, and Zupanc, Mary L., additional

Published
2017
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25. Longitudinal assessment of late-onset neurologic conditions in survivors of childhood central nervous system tumors: a Childhood Cancer Survivor Study report

Author

Wells, Elizabeth M, primary, Ullrich, Nicole J, additional, Seidel, Kristy, additional, Leisenring, Wendy, additional, Sklar, Charles A, additional, Armstrong, Gregory T, additional, Diller, Lisa, additional, King, Allison, additional, Krull, Kevin R, additional, Neglia, Joseph P, additional, Stovall, Marilyn, additional, Whelan, Kimberly, additional, Oeffinger, Kevin C, additional, Robison, Leslie L, additional, and Packer, Roger J, additional

Published
2017
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26. Temporal trends in chronic disease among survivors of childhood cancer diagnosed across three decades: A report from the Childhood Cancer Survivor Study (CCSS).

Author

Gibson, Todd M., primary, Mostoufi-Moab, Sogol, additional, Stratton, Kayla, additional, Barnea, Dana, additional, Chow, Eric Jessen, additional, Donaldson, Sarah S., additional, Howell, Rebecca M., additional, Hudson, Melissa M., additional, Leisenring, Wendy M., additional, Mahajan, Anita, additional, Nathan, Paul C., additional, Ness, Kirsten K., additional, Sklar, Charles A., additional, Tonorezos, Emily S., additional, Weldon, Christopher Bertero, additional, Wells, Elizabeth M., additional, Yasui, Yutaka, additional, Armstrong, Gregory T., additional, Robison, Leslie L., additional, and Oeffinger, Kevin C., additional

Published
2017
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27. Temporal trends in late-onset morbidity and mortality after medulloblastoma diagnosed across three decades: A report from the Childhood Cancer Survivor Study (CCSS).

Author

Salloum, Ralph, primary, Chen, Yan, additional, Yasui, Yutaka, additional, Packer, Roger, additional, Leisenring, Wendy M., additional, Wells, Elizabeth M., additional, King, Allison A., additional, Howell, Rebecca M., additional, Gibson, Todd M., additional, Krull, Kevin R., additional, Robison, Leslie L., additional, Oeffinger, Kevin C., additional, Fouladi, Maryam, additional, and Armstrong, Gregory T., additional

Published
2017
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28. Consensus paper on post-operative pediatric cerebellar mutism syndrome:the Iceland Delphi results

Author

Gudrunardottir, Thora, Morgan, Angela T, Lux, Andrew L, Walker, David A, Walsh, Karin S, Wells, Elizabeth M, Wisoff, Jeffrey H, Juhler, Marianne, Schmahmann, Jeremy D, Keating, Robert F, Catsman-Berrevoets, Coriene, Gudrunardottir, Thora, Morgan, Angela T, Lux, Andrew L, Walker, David A, Walsh, Karin S, Wells, Elizabeth M, Wisoff, Jeffrey H, Juhler, Marianne, Schmahmann, Jeremy D, Keating, Robert F, and Catsman-Berrevoets, Coriene

Abstract

INTRODUCTION: Confusion has surrounded the description of post-operative mutism and associated morbidity in pediatric patients with cerebellar tumors for years. The heterogeneity of definitions and diagnostic features has hampered research progress within the field, and to date, no international guidelines exist on diagnosis, prevention, treatment, or follow-up of this debilitating condition. An international group of clinicians and researchers from multiple relevant disciplines recently formed a cohesive panel to formulate a new working definition and agree upon standardized methods for diagnosis and follow-up.METHODS: Consensus was obtained using the modified nominal group technique, involving four rounds of online Delphi questionnaires interspersed with a structured consensus conference with lectures, group work, and open discussion sessions.RESULTS: A new, proposed definition of "post-operative pediatric CMS" was formed, preliminary recommendations for diagnostic and follow-up procedures were created, two working groups on a new scoring scale and risk prediction and prevention were established, and areas were identified where further information is needed.DISCUSSION: The consensus process was motivated by desire to further research and improve quality of life for pediatric brain tumor patients. The Delphi rounds identified relevant topics and established basic agreement, while face-to-face engagement helped resolve matters of conflict and refine terminology. The new definition is intended to provide a more solid foundation for future clinical and research work. It is thought as a consensus for moving forward and hopefully paves the way to developing a standard approach to this challenging problem with the advent of better scoring methods and ultimate goal of reducing the risk of CMS.

Published
2016

29. Alexander Disease

Author

Tavasoli, Ali, primary, Armangue, Thais, additional, Ho, Cheng-Ying, additional, Whitehead, Matthew, additional, Bornhorst, Miriam, additional, Rhee, Jullie, additional, Hwang, Eugene I., additional, Wells, Elizabeth M., additional, Packer, Roger, additional, van der Knaap, Marjo S., additional, Bugiani, Marianna, additional, and Vanderver, Adeline, additional

Published
2016
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34. Alexander Disease.

Author

Tavasoli, Ali, Armangue, Thais, Ho, Cheng-Ying, Whitehead, Matthew, Bornhorst, Miriam, Rhee, Jullie, Hwang, Eugene I., Wells, Elizabeth M., Packer, Roger, van der Knaap, Marjo S., Bugiani, Marianna, and Vanderver, Adeline

Subjects
ALEXANDER disease, NEURODEGENERATION, LEUKODYSTROPHY, GLIAL fibrillary acidic protein, MISSENSE mutation
Abstract

Alexander disease is a leukodystrophy caused by dominant missense mutations in the gene encoding the glial fibrillary acidic protein. Individuals with this disorder often present with a typical neuroradiologic pattern including white matter abnormalities with brainstem involvement, selective contrast enhancement, and structural changes to the basal ganglia/thalamus. In rare cases, focal lesions have been seen and cause concern for primary malignancies. Here the authors present an infant initially diagnosed with a chiasmatic astrocytoma that was later identified as having glial fibrillary acidic protein mutation-confirmed Alexander disease. Pathologic and radiologic considerations that were helpful in arriving at the correct diagnosis are discussed. [ABSTRACT FROM AUTHOR]

Published
2017
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39. Challenges in Determining the Role of Rest and Exercise in the Management of Mild Traumatic Brain Injury.

Author

Wells, Elizabeth M., Goodkin, Howard P., and Griesbach, Grace S.

Subjects
*BRAIN concussion, *REST, *WOUND care, *NEUROREHABILITATION, *FATIGUE (Physiology)
Abstract

Current consensus guidelines recommending physical and cognitive rest until a patient is asymptomatic after a sports concussion (ie, a mild traumatic brain injury) are being called into question, particularly for patients who are slower to recover and in light of preclinical and clinical research demonstrating that exercise aids neurorehabilitation. The pathophysiological response to mild traumatic brain injury includes a complex neurometabolic cascade of events resulting in a neurologic energy deficit. It has been proposed that this energy deficit leads to a period of vulnerability during which the brain is at risk for additional injury, explains why early postconcussive symptoms are exacerbated by cognitive and physical exertion, and is used to rationalize absolute rest until all symptoms have resolved. However, at some point, rest might no longer be beneficial and exercise might need to be introduced. At both extremes, excessive exertion and prolonged avoidance of exercise (physical and mental) have negative consequences. Individuals who have experienced a concussion need guidance for avoidance of triggers of severe symptoms and a plan for graduated exercise to promote recovery as well as optimal functioning (physical, educational, and social) during the postconcussion period. [ABSTRACT FROM AUTHOR]

Published
2016
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40. Pediatric brain tumors.

Author

Wells EM and Packer RJ

Subjects
Age Factors, Brain Neoplasms classification, Child, Child, Preschool, Humans, Medulloblastoma diagnosis, Medulloblastoma therapy, Prognosis, Treatment Outcome, Brain Neoplasms diagnosis, Brain Neoplasms therapy, Combined Modality Therapy methods, Pediatrics trends
Abstract

Purpose of Review: Pediatric brain tumors differ from those arising in adulthood. This article discusses the presentation, location, histology, new molecular understanding, therapy, and outcome of brain tumors in children., Recent Findings: Improved biological understanding of pediatric brain tumors is resulting in new molecular-based classification and the development of rationally designed therapeutics., Summary: The presentation of a pediatric brain tumor is dependent on the type of tumor, its location in the nervous system, and the age of the child. Diagnostic workup varies depending on the location of the tumor and the tumor's propensity to disseminate in the nervous system. Survival has improved for pediatric brain tumors, particularly medulloblastoma, as a result of improved surgical techniques and rational use of postoperative radiation and chemotherapy. For medulloblastoma, recent studies have sought to maintain or improve survival while decreasing neurologic sequelae, particularly from radiation in young children. For other childhood brain tumor types, improvements in outcome are not as clear-cut. New molecular insights will likely alter classification, risk stratification, and therapy in the near future.

Published
2015
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