medicine with cbd oil for dravet syndrome

The Latest Research on Cannabidiol and Dravet Syndrome | Laytonsville Medical Marijuana

Dravet syndrome is an epileptic condition affecting about one in 20,000 to 40,000 people. A cannabidiol-based treatment is FDA-approved to help relieve symptoms of this rare, genetic disorder – one of the latest ways the cannabis plant is being used as a legitimate, prescribed modality.

A study by New England Journal of Medicine showed that, when added to an anti-seizure regimen, a cannabidiol-based drug was helpful in reducing the frequency of convulsive seizures in children age 2 and older. This is hopeful news for parents of children with Dravet syndrome and some other seizure disorders.

This condition begins in infancy and lasts a lifetime. Once known variously as polymorphic epilepsy in infancy (PMEI), epilepsy with polymorphic seizures, or severe myoclonic epilepsy in infancy (SMEI), it is almost always caused by a gene mutation, but it is not necessarily inherited. The first seizure usually occurs before age one and is often preceded by a fever.

What makes the condition difficult for parents is the fact that babies with Dravet appear to develop normally during the onset of seizures and may have normal MRI and EEG tests for a while. Yet, over time, the seizures continue growing in strength and frequency. Affected children usually develop some degree of developmental delay and a crouched or unsteady gait (way of walking). They endure prolonged (10 minutes or more) or short seizures while awake or asleep. These can be triggered by stress, extreme temperatures, flashing lights, or no discernible cause.

It is usually not possible to eliminate seizure activity, but control is possible with multiple medications. Early intervention can help improve many children’s developmental abilities, as well as prolong life expectancy.

Cannabidiol for Dravet syndrome

A pure, oral solution of cannabidiol, or CBD, called Epidiolex was approved by the FDA in 2018 and has been shown to reduce the number of seizures. One study of 120 children and teens with Dravet shows that 43 percent treated with this drug saw the number of seizures cut in half or more.

It is important to note that Epidiolex is derived from medical quality cannabidiol oil. It is different from over-the-counter cannabidiol, or CBD, that is not approved by the U.S. Food and Drug Administration (FDA). Parents of children with epilepsy, Dravet syndrome, Lennox-Gastaut syndrome and other seizure disorders should not try over-the-counter CBD oil for seizures.

Dravet syndrome is just one of many uses for which medical cannabis and cannabidiol therapy can be useful. To see whether it is right for your particular condition, contact our office and schedule a cannabis in Laytonsville appointment with Dr. Sheila Brush. Just call 240-477-8158.

CBD for Neurologic Conditions in Children

Devinsky O, Patel AD, Cross JH, Villanueva V, Wirrell EC, Privitera M, Greenwood SM, Roberts C, Checketts D, VanLandingham KE, Zuberi SM.
Effect of Cannabidiol on Drop Seizures in the Lennox-Gastaut Syndrome.
N Engl J Med. 2018;378(20):1888-1897. PubMed abstract

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Devinsky O, Marsh E, Friedman D, Thiele E, Laux L, Sullivan J, Miller I, Flamini R, Wilfong A, Filloux F, Wong M, Tilton N, Bruno P, Bluvstein J, Hedlund J, Kamens R, Maclean J, Nangia S, Singhal NS, Wilson CA, Patel A, Cilio MR.
Cannabidiol in patients with treatment-resistant epilepsy: an open-label interventional trial.
Lancet Neurol. 2016;15(3):270-8. PubMed abstract

Thiele EA, Marsh ED, French JA, Mazurkiewicz-Beldzinska M, Benbadis SR, Joshi C, Lyons PD, Taylor A, Roberts C, Sommerville K.
Cannabidiol in patients with seizures associated with Lennox-Gastaut syndrome (GWPCARE4): a randomised, double-blind, placebo-controlled phase 3 trial.
Lancet. 2018;391(10125):1085-1096. PubMed abstract

Devinsky O, Cross JH, Laux L, Marsh E, Miller I, Nabbout R, Scheffer IE, Thiele EA, Wright S.
Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome.
N Engl J Med. 2017;376(21):2011-2020. PubMed abstract

Epidiolex

Prescribing

Dosing

Safety and Side Effects

Other Cannabis-Derived Pharmaceutical Medications

Unregulated CBD and “Medical Marijuana” Products

Legality

Safety

Discussing CBD with Families

  • Cannabis contains many chemicals, including CBD and THC. CBD is the substance felt to be helpful in epilepsy. THC is thought of as psychoactive and responsible for the “high” people experience with marijuana.
  • Preparations of CBD or “hemp” vary widely in the amounts of THC and CBD that they contain.
  • Even when products have CBD and THC concentrations on the label, they are often inaccurate.
  • There is no consensus on dosing of CBD for the treatment of epilepsy.
  • Depending on how much THC or CBD a child is actually receiving, common side effects can include diarrhea, somnolence, irritability, and changes in appetite.
  • CBD may affect the concentrations of other anti-epileptic medications in their child’s body. This could lead to possible toxicities and over-sedation.
  • Increased seizures, status epilepticus, and death have occurred in children taking CBD after families have chosen to stop their child’s other epilepsy medications without the guidance of a doctor. It is essential that families discuss any changes to anti-epileptic drugs (AEDs) with the prescribing physician.

Resources

Information & Support

For Professionals

FDA and Marijuana: Questions and Answers (FDA)
Answers to frequently asked questions about the FDA stance on cannabis-derived therapeutics and their role in ongoing research; US Food and Drug Administration.

State Medical Marijuana Laws (NCSL)
State and federal laws about medical marijuana; National Conference of State Legislatures.

Practice Guidelines

Ryan SA, Ammerman SD.
Counseling Parents and Teens About Marijuana Use in the Era of Legalization of Marijuana.
Pediatrics. 2017;139(3). PubMed abstract / Full Text
This clinical report offers guidance to the practicing pediatrician based on existing evidence and expert opinion/consensus of the American Academy of Pediatrics regarding anticipatory guidance and counseling to teenagers and their parents about marijuana and its use.

Patient Education

CBD Use in Children—Miracle, Myth, or Mystery?
A JAMA Pediatrics Patient Page about cannabinoids or cannabis products for children with various health conditions.

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Helpful Articles

Gaston TE, Bebin EM, Cutter GR, Liu Y, Szaflarski JP.
Interactions between cannabidiol and commonly used antiepileptic drugs.
Epilepsia. 2017;58(9):1586-1592. PubMed abstract

Wong SS, Wilens TE.
Medical Cannabinoids in Children and Adolescents: A Systematic Review.
Pediatrics. 2017;140(5). PubMed abstract
Systematic review to identify the evidence base of cannabinoids as a medical treatment in children and adolescents.

Koppel BS, Brust JC, Fife T, Bronstein J, Youssof S, Gronseth G, Gloss D.
Systematic review: efficacy and safety of medical marijuana in selected neurologic disorders: report of the Guideline Development Subcommittee of the American Academy of Neurology.
Neurology. 2014;82(17):1556-63. PubMed abstract / Full Text
A systematic review of medical marijuana (1948-November 2013) to address treatment of symptoms of multiple sclerosis (MS), epilepsy, and movement disorders.

Gloss D, Vickrey B.
Cannabinoids for epilepsy.
Cochrane Database Syst Rev. 2014(3):CD009270. PubMed abstract
Cochrane systematic review to assess the efficacy and safety of cannabinoids when used as monotherapy or add-on treatment for people with epilepsy

Ammerman S, Ryan S, Adelman WP.
The impact of marijuana policies on youth: clinical, research, and legal update.
Pediatrics. 2015;135(3):e769-85. PubMed abstract
AAP Technical Report on the epidemiology of marijuana use, definitions and biology of marijuana compounds, side effects, and effects of use on adolescent brain development. Legal and safety issues concerning medical marijuana specifically are also addressed, including effects on youth of criminal penalties for marijuana use and possession.

Authors & Reviewers

Current Authors and Reviewers:

Authors: Jennifer Goldman-Luthy, MD, MRP, FAAP
Melissa Wright, MD
Contributing Author: Carey A. Wilson, MD
Senior Author: Francis M. Filloux, MD
Reviewer: Lynne M. Kerr, MD, PhD
2019: first version: Francis M. Filloux, MD R

Page Bibliography

Ammerman S, Ryan S, Adelman WP.
The impact of marijuana policies on youth: clinical, research, and legal update.
Pediatrics. 2015;135(3):e769-85. PubMed abstract
AAP Technical Report on the epidemiology of marijuana use, definitions and biology of marijuana compounds, side effects, and effects of use on adolescent brain development. Legal and safety issues concerning medical marijuana specifically are also addressed, including effects on youth of criminal penalties for marijuana use and possession.

Bonn-Miller MO, Loflin MJE, Thomas BF, Marcu JP, Hyke T, Vandrey R.
Labeling Accuracy of Cannabidiol Extracts Sold Online.
JAMA. 2017;318(17):1708-1709. PubMed abstract / Full Text

Devinsky O, Cilio MR, Cross H, Fernandez-Ruiz J, French J, Hill C, Katz R, Di Marzo V, Jutras-Aswad D, Notcutt WG, Martinez-Orgado J, Robson PJ, Rohrback BG, Thiele E, Whalley B, Friedman D.
Cannabidiol: pharmacology and potential therapeutic role in epilepsy and other neuropsychiatric disorders.
Epilepsia. 2014;55(6):791-802. PubMed abstract / Full Text

Devinsky O, Cross JH, Laux L, Marsh E, Miller I, Nabbout R, Scheffer IE, Thiele EA, Wright S.
Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome.
N Engl J Med. 2017;376(21):2011-2020. PubMed abstract

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Devinsky O, Marsh E, Friedman D, Thiele E, Laux L, Sullivan J, Miller I, Flamini R, Wilfong A, Filloux F, Wong M, Tilton N, Bruno P, Bluvstein J, Hedlund J, Kamens R, Maclean J, Nangia S, Singhal NS, Wilson CA, Patel A, Cilio MR.
Cannabidiol in patients with treatment-resistant epilepsy: an open-label interventional trial.
Lancet Neurol. 2016;15(3):270-8. PubMed abstract

Devinsky O, Patel AD, Cross JH, Villanueva V, Wirrell EC, Privitera M, Greenwood SM, Roberts C, Checketts D, VanLandingham KE, Zuberi SM.
Effect of Cannabidiol on Drop Seizures in the Lennox-Gastaut Syndrome.
N Engl J Med. 2018;378(20):1888-1897. PubMed abstract

Drug Enforcement Administration.
Epidiolex placed in schedule V of Controlled Substance Act.
US Department of Justice; (2018) https://www.dea.gov/press-releases/2018/09/27/fda-approved-drug-epidio. . September 27, 2018 Press Release. Accessed on 12/20/2018.

Filloux FM.
Cannabinoids for pediatric epilepsy? Up in smoke or real science?.
Transl Pediatr. 2015;4(4):271-82. PubMed abstract / Full Text

Koppel BS, Brust JC, Fife T, Bronstein J, Youssof S, Gronseth G, Gloss D.
Systematic review: efficacy and safety of medical marijuana in selected neurologic disorders: report of the Guideline Development Subcommittee of the American Academy of Neurology.
Neurology. 2014;82(17):1556-63. PubMed abstract / Full Text
A systematic review of medical marijuana (1948-November 2013) to address treatment of symptoms of multiple sclerosis (MS), epilepsy, and movement disorders.

Maa E, Figi P.
The case for medical marijuana in epilepsy.
Epilepsia. 2014;55(6):783-6. PubMed abstract

Mead A.
The legal status of cannabis (marijuana) and cannabidiol (CBD) under U.S. law.
Epilepsy Behav. 2017;70(Pt B):288-291. PubMed abstract

Monte AA, Zane RD, Heard KJ.
The implications of marijuana legalization in Colorado.
JAMA. 2015;313(3):241-2. PubMed abstract / Full Text

Porcari GS, Fu C, Doll ED, Carter EG, Carson RP.
Efficacy of artisanal preparations of cannabidiol for the treatment of epilepsy: Practical experiences in a tertiary medical center.
Epilepsy Behav. 2018;80:240-246. PubMed abstract

Rosenberg EC, Tsien RW, Whalley BJ, Devinsky O.
Cannabinoids and Epilepsy.
Neurotherapeutics. 2015;12(4):747-68. PubMed abstract / Full Text
This provides a review of current understanding of the endocannabinoid system, the pro- and anticonvulsive effects of cannabinoids [e.g., Δ9-tetrahydrocannabinol and cannabidiol (CBD)], and evidence from pre-clinical and clinical trials of cannabinoids in epilepsy.

Thiele EA, Marsh ED, French JA, Mazurkiewicz-Beldzinska M, Benbadis SR, Joshi C, Lyons PD, Taylor A, Roberts C, Sommerville K.
Cannabidiol in patients with seizures associated with Lennox-Gastaut syndrome (GWPCARE4): a randomised, double-blind, placebo-controlled phase 3 trial.
Lancet. 2018;391(10125):1085-1096. PubMed abstract

Treat L, Chapman KE, Colborn KL, Knupp KG.
Duration of use of oral cannabis extract in a cohort of pediatric epilepsy patients.
Epilepsia. 2017;58(1):123-127. PubMed abstract

Wong SS, Wilens TE.
Medical Cannabinoids in Children and Adolescents: A Systematic Review.
Pediatrics. 2017;140(5). PubMed abstract
Systematic review to identify the evidence base of cannabinoids as a medical treatment in children and adolescents.