Vision 20/20 Task Force

Vision 20/20 Task Force

ICE Epilepsy Alliance is a member of the American Epilepsy Society’s Vision 20/20 Task Force, a group of advocacy groups committed to improve the lives of patients with epilepsy. At the request of the Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation, the National Institutes of Health, and Vision 20/20 the Institute of Medicine will convene an ad hoc committee to reco

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Seizure Alert Dogs

Seizure Alert Dogs

As many studies have concluded, alert and assist dogs can be beneficial for people with epilepsy. Alert and assist dogs range from assisting a person in day to day life, alerting when a person has a seizure, to even prediction an upcoming seizure. Although it must be noted a dog cannot be trained to predict seizures, it does occur, and through training dogs can be used to alert upon seizures, and even call for emergency services.  And with the American Disability Act, these dogs are allowed in public places, stores, and other venues where...

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Dravet Testing Facilities

Dravet Testing Facilities

A listing of centers across the world that offer SCN1A testing for Dravet Syndrome.

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Request for Nursing Services

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 for additional articles and letters on pursuing care for children with ICE, and where to look. State: OH Waiver name: Level One Description: This waiver allows MR/DD persons of all ages who meet the ICF/MR level of...

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Clinical Trials in Children with Intractable Epilepsy

Clinical Trials in Children with Intractable Epilepsy

Clinical trials are conducted to allow safety and efficacy data to be collected for health interventions (e.g., drugs, diagnostics, devices, therapy protocols). These trials can take place only after satisfactory information has been gathered on the quality of the non-clinical safety, and Health Authority/Ethics Committee approval is granted in the country where the trial is taking place.

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Alternative Therapy

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.ice-epilepsy.org Abstract Many people in the  United States experiment with  complementary and alternative medicines (CAM) on regular basis. The objective of this article is to provide a synopsis of available literature regarding use of alternative therapies in the treatment of epilepsy. Evidence based data on efficacy of CAM therapies in...

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Free Appropriate Public Education for Students wtih Disabilities

Free Appropriate Public Education for Students With Disabilities:Requirements Under Section 504 of The Rehabilitation Act of 1973 Introduction Section 504 of the Rehabilitation Act of 1973 protects the rights of individuals with disabilities in programs and activities that receive federal funds. Section 504 provides that: “No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to...

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Early Intervention Services

Early Intervention Services

A listing of websites arranged by state that provide early intervention services within the United States. It is important to start early intervention services and have regular developmental development checkups when epilepsy.

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Support for Sibblings

Support for Sibblings

In general, most children in families that include a child with a disability are likely to adapt and even blossom when their developmental needs are met in the family.

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Protective Helmets

Protective Helmets

 Your child’s neurologist, physical therapist, or teacher may recommend a protective helmet to prevent head injuries during falls from seizures. The helmets are most often ordered through physical therapy departments and custom made for the child’s head. A couple of websites for protective...

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Orthotics for Intractable Epilepsy

Orthotics for Intractable Epilepsy

Although orthotics are mentioned in many books available to families and professionals, there are few magazine articles or newspaper stories that mention these commonly used shoe inserts that do make a difference to children with epilepsy that also have low muscle tone or an abnormal gait or teens who have pain or discomfort due to walking differently during early childhood and beyond.

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