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NON-PHARMACOLOGICAL TREATMENT OPTIONS

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Listed below are some non-pharmacological treatment options for Lennox-Gastaut Syndrome.
Click on each option to learn more.
INTRAVENOUS IMMUNOGLOBULIN (IVIG)
 
IVIG is a blood product administered intravenously which may be used in the treatment of Lennox-Gastaut Syndrome and other forms of refractory epilepsy. There is emerging clinical evidence that IVIG may be of value in several refractory seizure conditions. (read more)
ACTH
 
Corticosteroids (predominantly prednisolone and hydrocortisone) and adrenocorticotropic hormone (ACTH) have been used in the treatment of the epilepsies for over 50 years. ACTH continues to be used as the first line treatment choice for Infantile Spasms (IS). It is generally accepted that oral corticosteroids or ACTH will reduce or stop IS and normalise EEG findings in between 50% and 75% of patients within a week or two of starting treatment. However, controversy exists regarding the relation between the duration of spasms prior to diagnosis and response to treatment in terms of both the short and long term (specifically developmental and cognitive) outcome.
MEDICAL MARIJUANA / CBD (CANNABIDIOL)
 
Cannabidiol (CBD) is a compound found in cannabis that may have potential therapeutic use for individuals living with Lennox-Gastaut Syndrome. The compound is said to quiet chemical and electrical activity in the brain without the drawback of effects from cannabis that THC typically includes. (read more)
 
 
ivig detail
INTRAVENOUS IMMUNOGLOBULIN (IVIG)
 
IVIG (intravenous immunoglobulin) is a blood product administered intravenously which may be used in the treatment of Lennox-Gastaut Syndrome and other forms of refractory epilepsy. IVIG comes from human plasma (the portion of the blood where the immune globulins and other blood proteins are contained (1) and is formed by taking antibodies
from thousands of blood donors. The plasma from all of these individuals is then pooled together and chemically treated to remove any other blood proteins or blood-borne pathogens.(2)

IVIG is given intravenously over a span of approximately 3-6 hours. Side effects of IVIG can include fever, rash, headache, fatigue and nausea (3). Most reactions occur during the infusion but some patients can develop side effects within the first few days. It is believed that since the side effects of IVIG are mild, this treatment should be available to patients who have been treated unsuccessfully even with new anti-epileptic drugs (4).

In 1977, IVIG was first reported to be effective in improving seizure frequency and behavior (5). Since then, several other clinical trials have been published, reporting improvement in seizures. For example, in one trial, 16 children with Lennox-Gastaut Syndrome were treated with IVIG and a significant improvement was seen in 8 of them (6). In
a separate trial in 1990, ten patients aged 4-14 years were given IVIG. Results showed that intravenous immunoglobulin had an immediate and pronounced effect on break-through seizure activity and a simultaneous neurophysiologic effect in 20% of patients with Lennox-Gastaut Syndrome (7).

There is emerging clinical evidence that IVIG may be of value in several refractory seizure conditions. The details regarding which patients and at what point of the illness it should be used need to be investigated further (8).
 
References:
1 BDI Pharma, Inc. 2010. BDI Pharma, Inc. 27 April 2010 http://www.bdipharma.com/Clinical-What-is-IVIG.aspx
2 Towson, MD.Immune Deficiency Foundation.IDF Patient and Family Handbook: For Primary Immunodeficiency Disease, 4th Edition. 2007.
3 Duhem C, Dicato MA, Ries F.Clin Exp Immunol. 1994 July; 97(Suppl 1): 79–83. Side Effects of intravenous immune globins.
4 Cavazzuti GB Neurological Sciences 2003 October; 24(4) s244-s245. Infantile Encephalopathies.
5 Pechadre JC, et al.  The treatment of epileptic encephalopathies with gamma globulin in children. Electroencephalogr Neurophysiol Clin. 1977 Oct-Dec;7(4):443-7.
6 Ariizumi M, Baba K, Shiihara H,Lancet 1983;2:162-163. High-dose gammaglobulin for intractable childhood epilepsy. Ariizumi M, Baba K, Shiihara H,
7 Illum N, Taudorf K, et al. Neuropediatrics. 1990 May;21(2):87-90. Intravenous immunoglobulin: a single-blind trial in children with Lennox-Gastaut syndrome.
8 Epilepsy.com, 2010. http://professionals.epilepsy.com/page/inflammatory_immuno.html. 26 April 2010
medical marijuana detail
 
MEDICAL MARIJUANA / CBD (CANNABIDIOL)
 
 
About Medical Marijuana for the treatment of LGS:
 
Cannabidiol (CBD) is a compound found in cannabis that may have potential therapeutic use for individuals living with Lennox Gastaut Syndrome. The compound is said to quiet chemical and electrical activity in the brain without the drawback of effects from cannabis that THC typically includes.   THC (tetrahydrocannabinol) is the compound most often associated with cannabis as it produces the effect of feeling “high.” Furthermore, CBD has demonstrated to have no lasting tolerance dependence on animals and humans.  In rats, CBD has effectively lowered the rate of tonic-clonic seizures, and when combined with the lack of adverse psychological effects, most researchers agree that cannabidiols are a new avenue to pursue for therapeutic treatments for patients with all epilepsies.  

Most studies available only demonstrate short term effects. Long term studies have shown positive effects in animals, but no long term study has been conducted in humans.  A study out of the University of California completed last year showed that cannabidiol can safely be administered with no adverse effects to patients with epilepsy, and in some cases can minimize the occurrence of seizures, especially tonic-clonic seizures . However, this study was only a short term experiment and more research needs to be done.

Anecdotal evidence is very prominent currently, as many families discuss the improvements of their child’s quality of life due to cannabidiols. While these stories are both hopeful and promising, more research needs to be done to secure this treatment option.
 
American Epilepsy Society Press Releases on Medical Marijuana:
 
AES Annual Meeting Abstracts: 
 
American Academy of Neurology Press Releases on Medical Marijuana:
 

LGS Foundation Position Statement on Medical Marijuana:

Lennox-Gastaut Syndrome (LGS) is a rare and severe form of childhood-onset epilepsy that frequently persists into adulthood. Patients with LGS typically suffer from frequent seizures of multiple types and moderate to severe cognitive impairment. Treatment options for LGS are somewhat limited and many patients do not respond well to currently available medications. The LGS Foundation feels that all patients living with Lennox-Gastaut Syndrome should have access to therapies and treatments that have the potential to reduce seizures and improve quality of life.

In light of significant media coverage of medical marijuana for the treatment of epilepsy, there has been growing interest among families and physicians for CBD (cannabidiol), a non-psychoactive component of the marijuana plant.  The LGS Foundation continues to learn about experiences (some successful, some unsuccessful) of LGS patients using medical marijuana, specifically CBD, as a treatment option.  As more and more U.S. states pass legislation allowing patients to legally access medical marijuana, we feel that it is important for families to consult their physician before beginning treatment.   Additionally, the LGS Foundation strongly believes that comprehensive studies on medical marijuana and CBD are needed to determine the safety and efficacy of these substances in patients with epilepsy. The LGS Foundation welcomes research proposals that will help accelerate the discovery and understanding of therapies such as CBD for LGS patients.  To learn more, visit www.lgsfoundation.org/research.
 

References:
1. Fujiwara, Michihiro, Katsunori Iwasakia, Kazuhide Hayakawaa, Nobuaki Egashiraa, Masayuki Fujiokaa, Kohji Abec, An-Xin Liua, Mai Hazekawaa, Ayumi Ogataa,, Masanori Nozakoa, and Kenichi Mishimaa. "Repeated treatment with cannabidiol but not Δ9-tetrahydrocannabinol has a neuroprotective effect without the development of tolerance." Neuropharmacology 52.4 (2007): 1079–1087. Web.
2. Jones, Nicholas A., Andrew J. Hill, Samantha E. Weston, Matthew D.A. Burnett, Gary J. Stephens, Benjamin J. Whalley, and Claire M. Williams. "Cannabidiol Exerts Anti-convulsant Effects In Animal Models Of Temporal Lobe And Partial Seizures." School of Pharmacy, UK 21.5 (2012): 344-52.PubMed. Web. 1 Oct. 2013
3.  Gloss, David, and Barbara Vickrey. "Cannabinoids for epilepsy." Department of Neurology University of California 6 (2012): 14. Pub Med. Web. 1 Oct. 2013
 
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