Contact: For Release On: Christina Johansen October 12, 2010 (336) 245-6503 ICE Epilepsy Alliance to Exhibit at the 2010 Child Neurology Society Annual Meeting in Rhode Island Contact: For Release On: Elliot Bruce October 12, 2010 (336) 214-7789 Winston-Salem, N.C. – The Intractable Childhood Epilepsy (ICE) […]
News - Part 7
ICE Alliance Exhibits in Child Neurology Society Annual Meeting
Orthotics for Intractable Epilepsy
Orthotics and Shoe Inserts for Children with Intractable Epilepsy Families of children in early intervention programs and those who participate in physical therapy centers often have questions about the use of shoe inserts known as orthotics for their children. Although orthotics are mentioned in many books available to families and professionals, there are few magazine […]
Case Study: Dravet Syndrome 20 yr. old patient
Dravet syndrome Case Study: 20 year old patient give Stiripentol, on alternative medications. This is a case study reflecting a Dravet syndrome consult by H Davies, PharmD to a pediatric neurologist in the US. Name of child is changed. This factual case is for learning purposes only. Any changes to medication should be under the supervision […]
PAME Conference
This 3-day learning event is the first Partners Against Mortality in Epilepsy (PAME) conference devoted predominantly to Sudden Unexpected Death In Epilepsy (SUDEP), where clinical, basic science and patient/family attendees will come together to understand and support each other. This is a joint effort of SUDEP Coalition partners (AES, CDC, CURE, EFA. ETP/FACES, NINDS, SUDEP […]
My Child Has Dravet – Now What?
My Child Has Dravet syndrome – What Next? Find a child neurologist that has experience in Dravet syndrome. Check out the Dravet syndrome article page with links to articles. The physicians listed are experienced in treating Dravet syndrome. To locate an epilepsy center in the US registered with the National Association of Epilepsy Centers, go […]
International Ion Channel Registry
What is the purpose of this registry? The International Ion Channel Epilepsy Patient Registry is a collaborative effort by the University of Michigan Department of Neurology and the Brain Institute at Miami Children’s Hospital to collect information from patients with ion channel epilepsies, beginning with Dravet syndrome (SMEI)* and related ion channel epilepsies (such as […]
Early Intervention Services
It is important to start early intervention services and have regular developmental development checkups when epilepsy. Below you will find a listing of websites arranged by state that provide early intervention services, for epilepsy patients, within the United States.
SCN1A Patients Advised to Avoid Sodium Channel Blockers
Why Should Patients with SCN1A mutations AVOID sodium channel blockers such as Lamictal? 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 […]
Glucose Transporter Type I Deficiency Syndrome (Glut DS)
Description: This deficiency mainly affects the brain and patients usually have seizures, which occur in the first few months of their life. Other Names & Associated Gene Mutations GLUT 1 SLC2A1 Associated Gene Mutations
Epilepsy Vocabulary
Frequently Used Terms in Intractable Childhood Epilepsy absence seizure (formerly called petit mal) generalized seizure most common in children; a lapse in consciousness with a blank stare that begins and ends within a few seconds. May be accompanied by rapid eye blinking or chewing movements.