The Nursing Challenges of Caring for Patients with NORSE Syndrome Melissa V Moreda RN BSN CNRN. disclosures. Merz . KS is a 28 yo Korean American female Admitted to OSH flu-like symptoms for 4-5 days. nausea/vomiting and 105.0 Fever.
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KS is a 28 yo Korean American female Syndrome
Admitted to OSH
flu-like symptoms for 4-5 days.
nausea/vomiting and 105.0 Fever.
She became disoriented and confused & had a witnessed tonic clonic seizure.
Recurrent seizures continued.Case #1 K.S.
Transferred to Duke in Status Epilepticus
NO past hx of childhood epilepsy, febrile seizure, no head trauma, no meningitis
NO family hx of sz, no predisposing evidence
Social hx: ANY exposure--- what do they work with? any unusual circumstances or any family/friends with recent sickness?
Medications (any herbals/supplements)
Extensive negative workup
Initial lines of anticonvulsants started.
Quick escalation of medication dosages and additional anticonvulsants added.
Paralytics added, max therapies reached.
Day 1--Dilantin, Topamax, Pentobarbgtt, Versed
Day 10– Dilantin, Topamax, Pentobarbgtt, Keppra, Zonisamide
Day 20– Lidocaine/Magnesium gtt
Day 30— Dilantin, Topamax, Clonazepam, Keppra,Phenobarb,Valproate, Ketamine
Day 40--Ativan gtt, MgSo4, Keppra, Topamax, Valproate, Phenobarb
Day 50 -- Ativan,Keppra,Topamax, Phenobarb, Memantine, Ketamine gtt
Day 62 -- Status continuing
Uroseptic - death within 1 hour of foley exchange
Electrical activity of the brain Syndrome
Abnormal electrical signal
What is the difference between
Seizures and Status Epilepticus
A single (finite) event of abnormal discharge in the brain that results in an abrupt and temporary altered state of cerebral function.
Morbidity & Mortality Syndrome
bed in low position
pulse ox/ vitals
staying with the patient
obtaining benzos & AEDS
Family needs education and reassurance
A seizure represents actual danger to brain tissue
Time is BRAIN
What’s going on here???
KS has the flu, spikes a fever, starts seizing and doesn’t stop despite multiple line anticonvulsants. Full life support.
Completely negative workup.
Family, Nurses, MD’s, PRM’s, want to know….
*2005 Wilder-Smith ,Lim, Teoh, Sharma, Tan, Chen, et al documented and claimed this phenomenon in Singapore.
-11 days: 1 patient survived, but in persistent vegetative state with frequent seizures.
Initial eeg captured ictal discharges in all.
In 3, eeg showed ictal discharges from bilateral fronto-temporal regions with no side preference.
In 1, continuous parasagital ictal discharge.
In 3, fronto-temporal discharges originating from the right on 2 occasions and once on the left
Problem: hypotension, caution in renal or hepatic impairment, MG
Problem: high doses suppress cardiac function,difficult to monitor levels, poor chemotaxis of wbc, paralysis of resp cilia, poikilothermia
Traditional goal of therapy: achieve burst suppression on EEG 12-24 hours to control or prevent recurrent seizures.
Termination of the seizures should occur rapidly to minimize neural damage, correction of metabolic defects, and resuscitation
When Syndromeyour clinical guidelines fail
in stopping seizures…
What do you do???
1st Maximize Phenytoin & Benzodiazepine loads. This usually controls 70% of patients.
2ndMidazolam boluses infusion, Propofol, Barbiturates
3rdTopiramate, phenobarbital, midazolam, pentobarbital, valproate, levetiracetam, lidocaine, ketamine, thiopental, or isoflurane
Thiopental: anesthetic that is barbiturate based.
IVIG: ?autoimmune, does not cross the BBB
Propofol: difficult to suppress sz while titrating/ balancing hemodynamics
Robakis, Hirch 2006 lit review + expert neurointensivists/ epileptologists
Tx included: ketamine, gammaglobulin, plasmapheresis, steroids, adrenocorticotropic hormone, high dose phenobarb, isoflurane, lidocaine, ect, ketogenic diet, hypothermia, mag
Corry, Dhar, Murphy, Diringer 2006
system suppressed, may need routine pan cultures
Nursing Considerations Syndrome
By exclusion only
*Radiographic Imagery (ct,mri)
*Serum samples: Heavy Metals, Complex Virus, RMSF, Arbovirus, Rabies, Leptospiral Abs, Autoimmune
YOU TELL ME
Merle Mishel PhD, FAAN- UNC Chapel Hill
Uncertainty in Illness Theory
Case Study #2 K.C. Syndrome