My Child Has Epilepsy – What Next?

My Child Has Epilepsy – What Next?

Advocate to maximize seizure control while balancing medication side effects - this is hard in drug resistant or intractable epilepsy.

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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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Have Hope

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 nervous system infection) seizures typically leads to a diagnosis of epilepsy.  Each year  45,000 children ages 15 and under develop epilepsy in the US.  Some of these...

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Epilepsy Vocabulary

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. acute repetitive seizure more than one seizure in 24 hours for an adult; more than one seizure in 12 hours for a child atypical absence seizure generalized seizure seen mostly in epilepsy syndromes or epileptic encephalopathies; a...

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Causes of Intractable Childhood Epilepsy

Causes of Intractable Childhood Epilepsy

Listed below are the epilepsy syndromes recognized by the International League against Epilepsy (ILAE) . The syndromes in red font are often associated with drug resistance or intractability and have additional information listed on the ICE website under childhood epilepsies. The link to the ILAE website for more information about the other syndromes is: www.ilae-epilepsy.org

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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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