Obtaining Stiripentol in the United States

Obtaining Stiripentol in the United States

Stiripentol is not an FDA approved drug. For the last several years, US citizens have been able to obtain stiripentol by ordering directly from Biocodex, France OR by ordering through Caligor Pharmacy, NY via the FDA's Personal Importation Policy (PIP):

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Autoinjectors offer way to treat prolonged seizures

Autoinjectors offer way to treat prolonged seizures

Drug delivery into muscle using an autoinjector, akin to the EpiPen used to treat serious allergic reactions, is faster and may be a more effective way to stop status epilepticus, a prolonged seizure lasting longer than five minutes, according to a study sponsored by the National Institutes of Health.

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FDA Approves ONFI™ (clobazam)

FDA Approves ONFI™ (clobazam)

“As an epileptologist treating patients with a variety of challenging seizure disorders, I’m aware of the need for new add-on therapies to address the severe and frequent seizures associated with LGS,” said Joan A. Conry, MD, professor of neurology at Children’s National Medical Center in Washington, D.C., and a principal investigator of the CONTAIN Trial. “Clobazam, now approved as ONFI, was shown to be effective as adjunctive therapy for reducing seizures associated with LGS,1 and its upcoming availability provides hope for additional seizure management to patients and their physicians, caregivers and families.”

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Autism and MMR Vaccine Study an ‘Elaborate Fraud,’ Charges BMJ

Autism and MMR Vaccine Study an ‘Elaborate Fraud,’ Charges BMJ

January 6, 2011 — BMJ is publishing a series of 3 articles and editorials charging that the study published in The Lancet in 1998 by Andrew Wakefield and colleagues linking the childhood measles-mumps-rubella (MMR) vaccine to a "new syndrome" of regressive autism and bowel disease was not just bad science but "an elaborate fraud." According to the first article published in BMJ today by London-based investigative reporter Brian Deer, the study's investigators altered and falsified medical records and facts, misrepresented information to families, and treated the 12 children involved unethically.

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2 Studies Show Lamotrigine Possible Risk Factor for SUDEP

2 Studies Show Lamotrigine Possible Risk Factor for SUDEP

December 22, 2010 (San Antonio, Texas) — Two new studies have found an association between the antiepileptic drug (AED) lamotrigine and increased risk for sudden unexplained death in epilepsy (SUDEP). One study, a pooled analysis of previous case-control studies, showed lamotrigine therapy was associated with SUDEP. This analysis also uncovered additional risk factors that have not been previously reported, including female sex and learning disability.

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Participate in a Dravet syndrome Genetic Study

Participate in a Dravet syndrome Genetic Study

The Genetic Investigation of Child Neurological Disorders Joseph Gleeson, M.D. And his team at UCSD seek to identify new causes of Dravet syndrome Who Can Help? Families with: prefer at least 2 members with epilepsy and at least one with Dravet syndrome (Also accepting Dravet participants without a family history of seizures) Dravet syndrome as a primary diagnosis and no SCN1A mutations found Epilepsy or Dravet syndrome must not be due to trauma, tumors, CNS infection, stroke, pregnancy or birth complications or othe environmental...

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UPDATE 1-Lundbeck says clobazam effective in seizures

By John Acher COPENHAGEN, Dec 6 (Reuters) - Danish drugmaker H Lundbeck (LUN.CO) said it got positive results in a Phase 3 trial of its candidate drug clobazam in treating seizures associated with Lennox-Gastaut syndrome. Lennox-Gastaut syndrome (LGS) is is a rare and severe form of epilepsy and Lundbeck reiterated it expected to submit a new drug application for clobazam as an adjunctive treatment for LGS to the U.S. Food and Drug Administration by year-end.

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Hope In Action

Hope In Action

Novel Compound Designed to Increase Protein Expression in SCN1A loss of function Mutations •More than 700 mutations of the Scn1a gene have been identified making this the most commonly mutated gene in human epilepsy. •More than 50% of these mutations result in a truncated protein clearly demonstrating haploinsufficiency of SCN1A as a cause of Dravet Syndrome. This means the mutation leads to a loss of function due to a premature stop codon (frameshift, nonsense, splice site, deletion, microdeletion)

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The Carbohydrate and Caloric Content of Concomitant Medications

The Carbohydrate and Caloric Content of Concomitant Medications

The ketogenic diet for children with refractory epilepsy requires a strict control of the amount of ingested carbohydrates. This can be altered by medication prescribed for the epileptic syndrome or for intercurrent illnesses. The goal of this paper is to compile the carbohydrate and caloric content of commonly used medications in this population.

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Tomorrow Isn’t Soon Enough

Tomorrow Isn’t Soon Enough

This page hosts a link to download a power point file that uses illustrations, graphs, and charts to convey a collection of gathered information on Dravet syndrome from the science end of the causes, to the information that is available on current cases of the disease, prognosis and even some drug information.

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Nootropic Drugs

Nootropic Drugs

A link to a downloadable PDF document outlining how Nootropic drugs work.

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Treatment for Fever in Children with Epilepsy

Treatment for Fever in Children with Epilepsy

Home Treatment for Fever in Children The three goals of home care for a child with a fever are to reduce the temperature, prevent dehydration, and monitor for serious or life-threatening illness.  Children with epilepsy may have worsened seizures during fever, even at temperatures below 102°F (38.9°C), the temperature in which most pediatricians recommend treatment. 1)  The first goal is to make the child comfortable by monitoring and reducing the fever to under 102°F (38.9°C) or the temperature in which you and your doctor are...

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SCN1A Patients Advised to Avoid Sodium Channel Blockers

SCN1A Patients Advised to Avoid Sodium Channel Blockers

Sodium channel blockers are anti-epileptic drugs that work in the sodium channel to preferentially affect the sodium channel at a specific stage of its cycle of rest, activation and inactivation, often by delaying the recovery from the inactivated state, thereby producing a cumulative reduction of Na+. Non-epileptic brains have a natural balance of excitation (that can evoke seizures) and inhibition (that can reduce seizures). In epilepsies that are caused by a too much excitatory neurotransmission (many of the epilepsies EXCEPT SCN1A mutation related epilepsies), sodium channel blockers are beneficial because they reduce the neurotransmitters that cause too much excitation.

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Emergency Administration of Rescue Medications

Emergency Administration of Rescue Medications

Purpose: to assist each child at the time of a seizure and when/if rescue medication administration is needed. Objectives: Upon completion of the rescue medication training, the participant(s) will demonstrate and/or verbalize the following competencies: Have a basic understanding of seizures and the different types and characteristics of each How to manage seizures Read medication label and how to correctly follow directions on medication label How to appropriately administer Diastat How to appropriately administer buccal midazolam How to...

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Pharmacology for Epilepsy Patients

Pharmacology for Epilepsy Patients

General Principles of Pharmacology for Epilepsy Patients and Their Caregivers Michelle Welborn, PharmD Your Epilepsy Pharmacist Editor’s Notes by Robert S. Fisher, M.D., Ph.D., Editor-in-Chief of epilepsy.com Edited by Robin Owen, Managing Editor Summary I recently attended a workshop for parents of children with epilepsy designed to gather opinions about the launch of an educational website. During the workshop, the following question was raised to this small group, “What information do you need from health-care providers to better...

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ICE Clinical Pearl:

ICE Clinical Pearl:

Vitamin B6 for behavioral improvement in children on Keppra (levetiracetam) Vitamin B6 (pyridoxine) supplementation may be useful in children with behavioral disorders associated with Keppra (levetiracetam). While there are not well controlled clinical trials, Vitamin B6 is inexpensive and

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