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 […]
News - Part 191
SCN1A Patients Advised to Avoid Sodium Channel Blockers
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.
FAPE Pre-school Letter Template
At times, as a parent advocate for a child with intractable epilepsy, we must become warriors. Your school age child is entitled to a Free and Appropriate Education (FAPE) beginning at age 3 years old in most states. Below is an example of a letter written to advocate for a child to be placed in […]
Canadian Dravet Syndrome Template Letter
Below is a letter on behalf of Canadian families who are seeking payment of Dravet syndrome therapies. This letter was distributed to the National Health Plan on the patient’s behalf. Danielle Allan, PharmD Founder Intractable Childhood Epilepsy Alliance York, PA 17401 Date Canadian xxxxxx Xxxxxxxx Xxxxxzxxz zzzzzz
Dravet syndrome Case Study
Dravet syndrome Pharmacotherapy Consultation S: Per mother: “My child currently weight 42 lbs, we tried the keto diet in winter – spring ’06 with no change in seizure control. The seizures he has been having recently are a combination of eye fluttering, chin tucking in to chest, drooling, with occasional myoclonics. He displays this activity for […]
Have Hope
ICE 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 […]
Alternative Therapy
Alternative therapies in treating epilepsy Yatin Patel Doctor of Pharmacy Candidate Wingate University School of Pharmacy Michelle Welborn, PharmD Preceptor Intractable Childhood Epilepsy Alliance www.epilepsytreatmentdrugs.com
Orphan Drug Act of 1983 & Rare Diseases
Approximately 5,000 rare diseases have been identified. 10-20 million Americans suffer from rare diseases, 50% of which are pediatric patients. A disease is considered rare or ‘orphan’ when the prevalence in the United States is less than 200,000. The diesease is termped ‘orphan’ because the pharmaceutical industry historically has not had an interest in developing […]
Request for Nursing Services
To all ICE advocates: This letter was written by a parent of a child with Dravet syndrome who appealed to the Ohio state Medicaid department for nursing services to care for her child. Each state has a different policy and plan for developmentally disabled children and their care, dependent on level of need. Please look […]