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 […]
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 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 […]
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 therapies in treating epilepsy Yatin Patel Doctor of Pharmacy Candidate Wingate University School of Pharmacy Michelle Welborn, PharmD Preceptor Intractable Childhood Epilepsy Alliance www.ice-epilepsy.org
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 […]
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 […]
Dear Parent: This is the template I have given to many parents who have advocated for payment of stiripentol, clobazam or Epistatus by private insurance or Medicaid. My first job out of residency was as Clinical Formulary Manager for a Health Maintenance Organization (HMO). In this role, I decided if exceptions should be made for […]
Dravet syndrome Harriet Davies, PharmD written for: National Organization for Rare Diseases March 2009 Synonyms of Dravet syndrome Severe Myoclonic Epilepsy in Infancy (SMEI) Polymorphic Epilepsy in Infancy (PMEI) Epilepsy with polymorphic seizures
Improving Outcomes in Pediatric Epilepsy Syndromes Stop the Status Improving OUtcomes in Pediatric Epilepsy Syndromes Overview – Seizures and Epilepsy Syndromes – Seizure Emergencies – Febrile Seizures
