My Child Has Dravet – Now What?

My Child Has Dravet – Now What?

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

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Dravet Syndrome

Dravet Syndrome

Developmental epilepsy that emerges during the first year of life with recurrent prolonged seizures, myoclonics, absence, and other seizure types that appear over time. Epilepsy is treatment resistant, prolonged seizures and status epilepticus occurs often,developmental delays occur to most children in some degree.

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When to See a Child Neurologist

When to See a Child Neurologist

It is important that a child is diagnosed and treated for epilepsy appropriately and the seizures are controlled as well as possible. In certain syndromes such as Infantile spasms, B-6 dependent seizures, and Dravet syndrome, early aggressive treatment may change the course of illness.

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Understanding Dravet Syndrome

Understanding Dravet Syndrome

Information pertaining to: Genetics of Na+ channel epilepsy disorders, SCN1A Phenotypes: "To lump or split", Febrile Seizures (FS, FS+), Genetic (generalized)epilepsy with febrile seizures plus, FEFS+, Dravet Syndrome and Derivatives, Intractable childhood epilepsy with generalized...

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About Dravet Syndrome

About Dravet Syndrome

Dravet syndrome Michelle Welborn, 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 Disorder Subdivisions Febrile Seizures Genetic Epilepsy with Febrile Seizures Plus (GEFS+) – formerly Generalized Epilepsy with Febrile Seizures Plus Severe Myoclonic Epilepsy Borderline (SMEB) Intractable Childhood Epilepsy with Generalized Tonic Clonic Seizures (ICE-GTC) General...

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Wrong Diagnosis

Wrong Diagnosis

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 24% patients diagnosed with cryptogenic focal epilepsy and 22% patients diagnosed with cryptogenic generalized epilepsy had an SCN1A mutation , thus were...

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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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