Ice Epilepsy Alliance

Epilepsy is one of the most common diseases of the nervous system: its frequency in the general population is 0.5-1%.

Basic Principles of  Intractable Epilepsy Treatment

  • improvement of the quality of life as the main criterion;
  • systems concept;
  • maximum individualization of treatment;
  • complexity;
  • stage therapy;
  • management of patients.Intractable Epilepsy_How To Live With It_

In 2010, the International Epileptic League Commission (ILAE) suggested a working hypothesis that epilepsy is considered intractable childhood epilepsy if seizure control is not achieved with the adequate use of 2 correctly selected and well-tolerated antiepileptic drugs (AEDs) in mono or combination therapy.

The degree of improvement in the epilepsy course in children involves 3 options:

  • moderate improvement – the reduction of epileptic seizures to 50%;
  • improvement – the reduction to 50-75%;
  • significant improvement – the reduction of more than 75%, with the implication of obtaining control over seizures. According to accepted international standards, an improvement is statistically significant when seizures are reduced by 50% or more from their original rate.

Prognosis for Epilepsy

The prognosis for epilepsy is dependent on the frequency of seizures. At the stage of remission, when the seizures occur not so often and predominantly at night, the patient’s ability to work remains. Daytime seizures of epilepsy, accompanied by loss of consciousness, limit the patient’s ability. Children suffer the most when coming across with ICE epilepsy. They should adjust to life with the diagnosis “Intractable Childhood Epilepsy”.

Epilepsy affects all aspects of the patient’s life, therefore, it is a significant medical and social problem. One of the spheres of lives is the lack of knowledge about intractable epilepsy and the associated stigmatization of patients whose judgments about the frequency and severity of mental disorders are often unreasonable. The vast majority of patients receiving the appropriate treatment, keep a normal lifestyle without attacks.

Preventative Measures

Prevention of epilepsy involves the possible prevention of traumatic brain injuries, intoxications and infectious diseases, prevention of possible marriages between epileptic patients, adequate temperature reduction in children to prevent fever, the consequence of which may be epilepsy.

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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Patient Registry

The goal of the registry is to collect data on as many patients as possible to make future research into specific symptoms, causes, and treatments easier to perform. By defining a large pool of affected individuals, future research can be performed more quickly and efficiently.

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Dravet Syndrome Won Compassionate Allowance Recognition

by the Social Security Administration Thursday December 6, 2012 Commissioner Astrue held an event at the Hart Senate Building at 10:00 a.m in Washington, DC to commemorate the milestone of reaching 200 Compassionate Allowances conditions.  Dravet Syndrome is one of the newest additions to this list of rare and debilitating conditions. This is a huge victory for people […]

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Our News

Have Hope

FICE Alliance – Have Hope for Intractable Epilepsies in Children Together we will Improve the Outcome and Reach for the Cure. Epilepsy is a condition where recurrent electrical discharges in the brain disturb the normal functioning of the nervous system. These episodes of disturbance are called seizures. Two or more unprovoked (caused by fever or […]

What It’s Like To Live With Epilepsy | My Story

“At first, it was scary to go out alone: how I live with epilepsy… and suffer from the side effects of drugs.” This text was written by a member of the Epilepsy Foundation support group. We carefully edited the story and formatted it according to editorial standards. “Oh dear, you passed out…” This is what […]

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 […]

Epilepsy in Adults: Causes and Treatments

Epilepsy is a chronic disease associated with impaired activity of the cells of the cerebral cortex. Normally, nerve cells (neurons) transmit signals using small electrical impulses. During epilepsy, the normal processes of regulating the power of electrical impulses and the processes of their transfer between neurons are disrupted. As a result, a very strong electrical […]

FAQs about Epilesy

Is Epilepsy a Mental Disorder? Epilepsy is not a mental disorder. Indeed, several decades ago there was a belief that epilepsy treatment is the prerogative of psychiatrists. And even earlier there was an opinion that epilepsy is one of the forms of insanity. Patients who had such kind of seizures were placed in hospitals for […]

Lamictal (Lamotrigine) for Epilepsy Treatment

Lamictal (Lamotrigine) is a drug used in the treatment of epilepsy and bipolar affective disorders. The preparation can also be prescribed for the treatment of depression. Seizure medication Lamictal has a few undesirable effects and is well tolerated in most patients.

Common and Rare Side Effects for Lamictal (Lamotrigine)

What are the side effects of Lamictal? This question interests all patients with epilepsy and bipolar disorders. The information is divided into adverse reactions in patients with epilepsy and adverse reactions in patients with bipolar disorder. However, to consider the general safety of Lamictal (Lamotrigine), it is necessary to take into account the information of […]

What is Lamictal (Lamotrigine)?

Lamictal (Lamotrigine) is a drug that belongs to the group of antiepileptic drugs (AED) with the main active substance – Lamotrigine. Lamotrigine is used for the nervous system normalization, cures seizures of epilepsy, convulsions and manifestations of the convulsive syndrome. Pharmaceutical Form and Components Lamictal is released in the form of tablets of a round form of white […]

Antiepileptic Lamictal Monotherapy: Goals, Results, Conclusion

Epilepsy is a common neurologic disease in which abnormal electrical discharges in the brain cause repeated seizures. Approximately 70% of patients with epilepsy take one antiepileptic drug that can prevent generalized or partial seizures – Lamictal (Lamotrigine). This review is applicable to patients with partial seizures (with or without secondary generalization) and patients with generalized […]