Additional Dystonia Information

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More terms related to dystonia:

  • Dyskinetic Cerebral Palsy–a term that includes three different types of involuntary movements including dystonia, athetosis and chorea. A person with dyskinetic CP may have one or more of these types of movements which are called “dyskinesias”. Athetosis and chorea are rare and, when they do occur they typically are present together with dystonia. When chorea and athetosis are seen together they are referred to as choreathetosis.
  • Dyskinesias–this is a term referring to chorea, athetosis and dystonia.
  • Chorea-refers to an ongoing set of random movements.
  • Muscle tone — the amount of resistance or tension during rest or in response to stretching.

  • Status Dystonicus — the development of increasingly frequent or continuous severe episodes of generalized dystonic spasms (contractions) that require urgent (hospital) management. Status dystonicus is also referred to as a dystonic storm or dystonic crisis.

Dystonia in Cerebral Palsy References

  1. American Academy of Cerebral Palsy and Developmental Medicine(AACPDM) Dystonia Care Pathway Work Group.  Cerebral Palsy and Dystonia. AACPDM, Milwaukee, WI, AACPDM Dystonia in CP Care Pathwayhttps://www.aacpdm.org/publications/care-pathways/dystonia-in-cerebral-palsy, Accessed September 16, 2024, Updated April 2024.
  1. Aravamuthan B, Pearson TS, Chintalapati K, Ueda K. Under-recognition of leg dystonia in people with cerebral palsy. Ann Child Neurol Soc. 2023 Jun;1(2):162-167. doi: 10.1002/cns3.20018. Epub 2023 Apr 5. PMID: 38464792; PMCID: PMC10923506.
  1. Center for Disease for Control. About Cerebral Palsy. Centers for Disease Control, Atlanta, GA. https://www.cdc.gov/cerebral-palsy/about/index.html  Accessed September 17, 2024, updated May 14, 2024.
  1. Dar H, Stewart K, McIntyre S, Paget S. Multiple motor disorders in cerebral palsy. Dev Med Child Neurol. 2024 Mar;66(3):317-325. doi: 10.1111/dmcn.15730. Epub 2023 Aug 14. PMID: 37579020.
  1. Durkin MS, Benedict RE, Christensen D, Dubois LA, Fitzgerald RT, Kirby RS, Maenner MJ, Van Naarden Braun K, Wingate MS, Yeargin-Allsopp M. Prevalence of Cerebral Palsy among 8-Year-Old Children in 2010 and Preliminary Evidence of Trends in Its Relationship to Low Birthweight. Paediatr Perinat Epidemiol. 2016 Sep;30(5):496-510. doi: 10.1111/ppe.12299. Epub 2016 May 23. PMID: 27215680; PMCID: PMC5351288.
  1. Eggink H, Kremer D, Brouwer OF, Contarino MF, van Egmond ME, Elema A, Folmer K, van Hoorn JF, van de Pol LA, Roelfsema V, Tijssen MAJ. Spasticity, dyskinesia and ataxia in cerebral palsy: Are we sure we can differentiate them? Eur J Paediatr Neurol. 2017 Sep;21(5):703-706. doi: 10.1016/j.ejpn.2017.04.1333. Epub 2017 May 9. PMID: 28549726.
  1. Fehlings D, Agnew B, Gimeno H, Harvey A, Himmelmann K, Lin J-P, et al. Pharmacological and neurosurgical management of cerebral palsy and dystonia: Clinical practice guideline update. Dev Med Child Neurol. 2024; 66: 1133–1147. https://doi.org/10.1111/dmcn.15921.
  1. Gilbert LA, Fehlings DL, Gross P, Kruer MC, Kwan W, Mink JW, Shusterman M, Aravamuthan BR; Cerebral Palsy Research Network Dystonia Study Group. Top 10 Research Themes for Dystonia in Cerebral Palsy: A Community-Driven Research Agenda. Neurology. 2022 Aug 9;99(6):237-245. doi: 10.1212/WNL.0000000000200911. Epub 2022 Jun 17. PMID: 35715199; PMCID: PMC9442618
  1. Hägglund G, Hollung SJ, Ahonen M, Andersen GL, Eggertsdóttir G, Gaston MS, Jahnsen R, Jeglinsky-Kankainen I, Nordbye-Nielsen K, Tresoldi I, Alriksson-Schmidt AI. Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: a CP-North registry study. BMC Neurol. 2021 Jul 12;21(1):276. doi: 10.1186/s12883-021-02289-3. PMID: 34253183; PMCID: PMC8274039.
  1. Horber V, Andersen GL, Arnaud C, De La Cruz J, Dakovic I, Greitane A, Hensey O, Himmelmann K, Hollody K, Horridge K, Künzle CT, Marcelli M, Ortibus E, Papavasiliou A, Perra O, Platt MJ, Rackauskaite G, Sigurdardottir S, Troha Gergeli A, Virella D, Krägeloh-Mann I, Sellier E. Prevalence, Clinical Features, Neuroimaging, and Genetic Findings in Children With Ataxic Cerebral Palsy in Europe. Neurology. 2023 Dec 12;101(24):e2509-e2521. doi: 10.1212/WNL.0000000000207851. Epub 2023 Oct 19. Erratum in: Neurology. 2024 Jul 9;103(1):e209596. doi: 10.1212/WNL.0000000000209596. PMID: 37857495; PMCID: PMC10791054.
  1. Jaleel F, Rust A, Cheung S, Pearson TS, Ueda K, Robichaux-Viehoever A, Leger K,

Chintalapati K, Guez-Barber D, Shusterman M, Aravamuthan B. Caregiver descriptions of

dystonia in cerebral palsy. Ann Clin Transl Neurol. 2024 Feb;11(2):242-250. doi:

10.1002/acn3.51941. Epub 2024 Jan 4. PMID: 38174361; PMCID: PMC10863918.

  1. Mink JW. Special concerns in defining, studying, and treating dystonia in children. Mov Disord. 2013 Jun 15;28(7):921-5. doi: 10.1002/mds.25548. PMID: 23893449; PMCID: PMC3806453.
  1. Penner M, Xie WY, Binepal N, Switzer L, Fehlings D. Characteristics of pain in children and youth with cerebral palsy. Pediatrics. 2013 Aug;132(2):e407-13. doi: 10.1542/peds.2013-0224. Epub 2013 Jul 15. PMID: 23858420.
  1. Rice J, Skuza P, Baker F, Russo R, Fehlings D. Identification and measurement of dystonia in cerebral palsy. Dev Med Child Neurol. 2017 Dec;59(12):1249-1255. doi: 10.1111/dmcn.13502. Epub 2017 Aug 8. PMID: 28786476.https://doi.org/10.1111/dmcn.13502
  1. Sanger TD, Chen D, Fehlings DL, Hallett M, Lang AE, Mink JW, Singer HS, Alter K, Ben-Pazi H, Butler EE, Chen R, Collins A, Dayanidhi S, Forssberg H, Fowler E, Gilbert DL, Gorman SL, Gormley ME Jr, Jinnah HA, Kornblau B, Krosschell KJ, Lehman RK, MacKinnon C, Malanga CJ, Mesterman R, Michaels MB, Pearson TS, Rose J, Russman BS, Sternad D, Swoboda KJ, Valero-Cuevas F. Definition and classification of hyperkinetic movements in childhood. Mov Disord. 2010 Aug 15;25(11):1538-49. doi: 10.1002/mds.23088. PMID: 20589866; PMCID: PMC2929378.

Thank you to AACPDM and their Dystonia Care Pathway. We have used information from this resource throughout the Dystonia in CP Toolkit. https://www.aacpdm.org/publications/care-pathways/dystonia-in-cerebral-palsy.