Intractable Epilepsy: The Invisible Disability W. McIntyre Burnham Intractable epilepsy as a disability Epilepsy is sometimes called the “invisible disability”. Is this a reasonable assessment? If one thinks in terms of people with drug-responsive seizures, the term “disability” is probably too strong. These people usually lead normal lives, and reach their full potential for accomplishment. […]
Child Neurology:Dravet syndrome When to suspect the diagnosis Hollie Robinson, MD Alex Goodwin, MD, PhD Tom Davis, MD George Walton, Jr., MD ABSTRACT Dravet syndrome (DS), previously known as severe myoclonic epilepsy in infancy (SMEI), is an epileptic encephalopathy that presents with prolonged seizures in the first year of life. The seizures often occur with […]
How much time and money does it take to bring a drug to market in the United States? According to FDA estimates, it takes an average of 8 ½ to 17 years, from drug conception to marketing, before a drug is finally FDA approved for use in the general patient population. An article published in […]
Solving the Puzzle of Intractable Childhood Epilepsy Syndromes Harriet Davies, PharmD Intractable Childhood Epilepsy Alliance Durango, CO 81301 Introduction: The genetic basis of pediatric epilepsy syndromes is receiving increasing attention as known seizure propagating gene mutations are identified and genetic testing is commercially available. Dravet syndrome, or severe myoclonic epilepsy of infancy (SMEI), is an […]
This template letter for an adaptive stroller and adaptive car seat for your child may be useful if you are pursuing payment of these items by your insurance carrier. Aetna paid for the stroller but not the car seat. Aetna Appeals Resolution Team Re: Denial #_________ Patient: _________ DOB: _________ To Whom it May Concern: […]
US Brand and Generic Drugs and their Carbohydrate Content Below is a list of AEDs (brand and generic) compiled by Yatin Patel, Doctor of Pharmacy Candidate of Wingate School of Pharmacy, August 2010 while at ICE for a Drug Information Rotation. Dr. Harriet Davies has checked for accuracy of information. This list represents generics and […]
The above link will automatically download A PDF file of a 36 page power point presentation created by Sofia Walton, Pharm D. Candidate, Wingate University reviewing Ion Channel Epilepsies into a new browser window or tab.
Harriet Davies founded the ICE Epilepsy Alliance after her daughter was diagnosed with Ion Channel Epilepsy. In this interview on Voices and Viewpoints Michelle, talks about the goals she maintains for the ICE Epilepsy Alliance, the process of getting her daughter’s condition diagnosed, and the affect it has had on their family of four.
Focal Epilepsy, Generalized Epilepsy, Lennox-Gastaut Diagnosis, Atypical Febrile Seizures and Epilepsy of Unknown Cause Beginning in Children < 1 year old: When to Suspect an SCN1A mutation related epilepsy A clinical study published in Brain 2007 (Harkin et al) reported from a multi-national study of 188 patients with epileptic encephalopathies (epilepsy with brain dysfunction) that […]
ABSTRACT: Background: 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. […]
