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Issues in Developmental Disabilities Epilepsy in the Intellectually and Developmentally Disabled. Discussion with Christopher M. Inglese, M.D. and Susan Heighway, M.S., A.P.R.N. Questions for Child Neurologist. Is the child having a seizure?
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Issues in Developmental DisabilitiesEpilepsy in the Intellectually and Developmentally Disabled Discussion with Christopher M. Inglese, M.D. and Susan Heighway, M.S., A.P.R.N.
Questions for Child Neurologist • Is the child having a seizure? • Children should be referred to someone with a good sense of what a seizure is and what it represents • Difficult to answer because there are many variations on the seizure theme
Q: Are there developmental/genetic diagnoses that signify need for neurological evaluation? • Tuberous Sclerosis, Neurofibromatosis, Trisomy 21, Down Syndrome, Fragile X – highly associated with seizures and epilepsy
Q: Are children with autism spectrum disorder at risk for seizures? • Children with autism at tremendous risk since autism is symptom of variety of brain insults • Idiopathic/primary autisms – still relatively high incidence of seizures • High incidence of behaviors that mimic seizures • Much overlap between seizures and behaviors
Q: What kinds of information related to seizures would be helpful for neurologist? • Caretakers/parents/teachers need to be the eyes and ears of clinician making diagnosis • Need for careful, precise, blow-by-blow description of ictus (event) – more important than EEG, MRI or CAT scan
Q: When should neurological opinion be sought for staring seizures? • Two kinds of staring seizures • 1) Absence seizure – abrupt onset and offset, particularly if there’s arrest of ongoing activity like walking or eating; usu. 10-20 seconds • 2) Complex partial seizure – characterized by fumbling with hands (automatisms), smacking lips, drooling or involuntary swallowing; usu. 1 minute to 90 seconds • Useful tools for parents/teachers – gentle shaking of shoulders, speaking to child, waving in front of eyes
Q: How often and for what purposes would it be useful for a child to be seen by a neurologist? • Many children stay on medication well beyond point where it is needed • Medications may negatively impact learning, mood, bone health • Good to get kids off medication as soon as it’s safe • If child is still at risk for seizures, good for neurologist to be involved given medical advances
Q: What kinds of things are important for the other team members related to seizure follow-up? • Teacher feedback regarding plateau-ing or regression in rate of learning is important • Teacher feedback regarding whether child is exhibiting signs of ADHD • Information from occupational therapist or physical therapist can be useful
Q: What kinds of challenges have you seen working with teams that you would like some assistance with? • A disinterested person accompanying the person with epilepsy • Some patients may bring in too much documentation that is counterproductive • In context of Trisomy-21, Dementia, and seizures involving disinhibited behaviors and aggression, lack of information may lead to overprescription of medications • Ideally, need to look at social context
Q: What are the major changes, improvements in care, and treatment of seizures over the past few decades? • 2 categories – 1) better understanding of epidemiologic aspects and 2) more user friendly medical treatments • Better medications with less side effects • Novel interventions – vagus nerve stimulation • Better sense of when to consider resecting part of the brain that’s causing seizures • May be important at times to use old treatment modalities such as (ketogenic) diets
Q: What are the major changes, improvements in care, and treatment of seizures over the past few decades? (2) • Dr. Matteson’s and Dr. Brody’s Studies – medical intractability (the point at which it’s futile to keep prescribing more medications) • Medications that don’t require blood being drawn or surveillance labs • Vagus nerve stimulation – a way of reducing seizure frequency, seizure duration, and recovery period; also helps mood & intractable depression in adults • Surgery – technological advances in imaging
Q: What are we (neurologists) not doing well? • Most parents want to hear that there isn’t a problem • Neurologists are in a difficult position of having to describe situation as is, provide a reality check • Neurologists need to communicate to parents that even though diagnostic tests may not reveal any serious conditions, there is still reason for concern; need to keep the door open