Majority of Pediatric Epilepsy Readmissions Are Preventable

Majority of Pediatric Epilepsy Readmissions Are Preventable

Approximately one-fifth of pediatric epilepsyhospital readmissions, many of which occur within 7 days of index discharge, are preventable, according to the findings of a research paper published in Pediatric Neurology.

A collaborative, interdisciplinary team from a tertiary care, free-standing children’s hospital was established to review 30-day readmission data of admitted epilepsy patients. The team was comprised of inpatient and outpatient neuroscience nurses, care managers, a quality outcomes manager, and pediatric neurologists.

Collected data included the day of index discharge, day of readmission, index and readmission length of stay, number of days between initial discharge and readmission, initial admission team, and readmission team. The time frame for admission analysis was May 2014 to October 2016.

During the 30-month study period, the all-cause 30-day readmission rate was 219 pediatric epilepsy readmissions (8.0%). Of the 21.5% readmissions that were scheduled, up to 37%, 9.6%, and 14.6% were for progression of chronic epilepsy, recently diagnosed epilepsy, and unrelated diagnoses, respectively.

Study limitations were the inclusion of patients from a single center as well as the variability in how readmissions were classified, which may have reduced the generalizability of the findings across other centers.

“We believe that all readmissions are potentially preventable and that it is worthwhile for child neurologists to review readmissions,” the researchers wrote. “Focusing on 7-day readmissions should allow providers to examine the majority of preventable readmissions.”

EpilepsyU Source:


Vawter-Lee M, Lutley A, Lake SW, et al. Pediatric epilepsy readmissions: the who, when, and why[published online December 25, 2018]. Pediatr Neurol. doi:10.1016/j.pediatrneurol.2018.12.007
Epilepsy Characterized as Congenital Heart Disease Complication

Epilepsy Characterized as Congenital Heart Disease Complication

A high overall incidence of epilepsy in children with congenital heart disease (CHD) and a markedly higher incidence in those with perioperative clinical seizures (CS) prompted a neurocardiology team to call for increased perioperative electroencephalogram (EEG) monitoring.

“The last decades have been marked by considerable advances in perioperative care of children undergoing congenital heart surgery,” study co-author Nancy Poirier, MD, Division of Cardiac Surgery, Department of Surgery, Sainte-Justine University Hospital Center and University of Montreal, told MD Magazine®.

Nancy Poirier, MD

PHOTO: Nancy Poirier, MD

“With high survival rates, the focus of pediatric cardiac surgical teams has shifted towards improving functional outcomes with the ultimate goal of offering our tiny patients a bright cardiac and neurodevelopmental future,” Poirier said.

Poirier said this goal is only feasible with collaboration with neurologists, intensivists, developmental pediatricians, paramedical professional including physiotherapists and occupational therapists, and clinical investigators.

Such a multidisciplinary team collaborated with researchers at the Clinique d’Investigation Neuro-Cardiaque (CINC), Sainte-Justine, Montreal, Canada, and study principle investigators, Lionel Carmant, MD and Ala Birca, MD, PhD, to conduct a prospective investigation of the incidence and risk factors of perioperative clinical seizures (CS) and epilepsy in children who undergo cardiac surgery for complex CHD.

The investigators identified 128 consecutive children with CHD who underwent cardiac surgery with or without cardiopulmonary bypass at a neurocardiac clinic to follow for a period of at least 2 years. Perioperative seizures were defined as any CS occurring before the first surgery or less than 21 days after any surgery; and epilepsy as seizure recurrence more than 21 days after surgery.

Univariate logistic regression was applied to determine risk factors for perioperative CS and the development of epilepsy.

Four of the 128 patients (3.1%) developed epilepsy (median age 7.75 months; range 2 – 26 months). Among the 10 patients (7.8%) who had experienced perioperative CS, 4 (40%) developed epilepsy.

Analysis revealed that CS was most common in patients with higher Risk Adjustment for Congenital Heart Surgery (RACHS) scores, delayed sternal closure and use of extra corporeal membrane oxygenation (ECMO). These patients also required longer periods in the pediatric intensive care and durations of hospital stay.

In addition, there was higher likelihood of CS in patients with longer cardio-pulmonary bypass, aortic clamp times and deep hypothermic circulatory arrest. Use of ECMO and longer hospital stay was also associated with epilepsy.

Carmant, Birca and colleagues note that EEG monitoring had not been systematically performed in this cohort, but that it had detected 1 additional patient with preoperative EEG-only seizure. They suspect, therefore, that the reported 7.8% of children with clinically apparent seizures was an under representation of the actual incidence of seizures, and of those at highest risk for epilepsy.

“None of the patients without perioperative CS developed epilepsy,” investigators observed. “We believe that both clinical and EEG-only seizures are equally involved in epileptogenesis.”

They also assert that undiagnosed and untreated EEG-only seizures persist longer and eventually manifest clinically.

“This underscores the importance of perioperative EEG monitoring, as seizure persistence during the critical period is one of the main predictors of later epilepsy,” Carmant, Birca and colleagues indicated.

Poirer added that perioperative monitoring is critical in detecting potential brain injury and guide treatment.

“Continuous EEG monitoring of brain activity allows us to detect seizures, which are frequently not clinically manifest, but may contribute to brain injury and long-term sequelae such as epilepsy and impaired neurodevelopment,” she said.

Investigators strongly advocated for a “more liberal use” of EEG monitoring in vulnerable infants.

The study, Epilepsy and Seizures in Children with Congenital Heart Disease: A Prospective Study, was published online in Seizure: European Journal of Epilepsy.

SOURCE: by K. Bender, PharmD, MA

Boy, 2, is diagnosed with rare form of epilepsy after he cried for 15 hours straight and suffered painful bouts of hiccups and hysterical LAUGHTER

Boy, 2, is diagnosed with rare form of epilepsy after he cried for 15 hours straight and suffered painful bouts of hiccups and hysterical LAUGHTER

A two-year-old boy has a rare form of epilepsy that left him in tears for 15 hours straight and triggered painful outbursts of hiccups and hysterical laughter for six months.

Jack Trotter was born in Atlanta, Georgia July 2016 – a seemingly healthy baby after a smooth birth.

But a day after his mother Leah, 30, took him home to his father and sister, things changed: he began crying consistently and as his cries intensified, he became inconsolable.

Initially Leah, a special needs advocate, wasn’t worried. Babies cry, this is normal.

But this was merely a hint of a much more serious condition that would take more than a year to diagnose.

As pediatricians insisted Jack was just ‘irritable’, the little boy endured painful episodes once a month of laughter or hiccups or tears.

At three months old, in October 2016, they thought they had found an answer – a terrifying one: a doctor misdiagnosed Jack with terminal Mitochondrial disease which usually proves fatal.

However, two months later, Jack was finally diagnosed with Pyridoxine Dependent Epilepsy (PDE), a rare cause of stubborn, difficult to control, seizures appearing in newborns, infants and occasionally older children.

It is treatable – but without care and medication it can be life-threatening, and his mother Leah is now fighting to get more kids tested at birth to avoid preventable deaths.

‘We went through six months of hell and our son almost died from a treatable condition that could be tested at birth. So, that is my first order of business,’ Leah said.

‘I try to advocate through social media platforms for PDE and I have since helped a mother in Brazil obtain access to the specialists necessary to treat her daughter with PDE.

‘I would like other mothers in similar situations to know that they control the narrative. Don’t let a doctor dictate the way you feel about the diagnosis being given to your child.

“I hope that all mothers faced with these situations won’t become overwhelmed with the heavy diagnosis and medical terminology being thrown around, but instead will use the opportunity to rise up and make the best quality of life for their child.’

Leah, says she ‘was on top of the world’ when Jack, her second child, was born.

‘He was perfect at eight pounds and three ounces, 22 inches long. He nursed perfectly right off the bat,’ Leah said.

It all went smoothly. She gave birth on a Saturday morning and was home by Monday afternoon.

‘Everything was perfect. He ate well, he slept well, he was an easy and happy baby,’ she explains.

But things shifted abruptly on Tuesday evening when Jack started cry.

Leah insists she wasn’t concerned at first (‘I rocked him, loved him and knew he would feel better soon. We had our routine follow-up with his pediatrician on Wednesday.’)

But she wasn’t aware then that they were embarking on a long arduous journey to get a diagnosis.

‘Jack had still not stopped crying by that time. No exaggeration, Jack cried for 15 hours straight. He cried the entire time at the pediatrician’s office.’

After their appointment, they went home, and the crying didn’t stop until about 8pm that evening. Jack had still been eating throughout all the crying, but when stopped crying he stopped nursing.

Then something new started – and Leah was sure it was something like a seizure.

‘I cannot explain it, although I have told the story to more doctors than I can count,’ she explains.

‘Jack did not look quite right after the crying stopped. Keep in mind, he was barely five days old at this time so it was hard to say if he was just brand new or if he was acting strange.

‘Babies are strange; they have strange movements. But something was neurologically not right, and I knew it.

‘He did not look like he was seizing (not in the sense that I thought a seizure looked like at that time at least), but something told me he was having little seizures.

‘He was slightly shaking, jittery as they called it in the hospital, and then he would startle and throw his left arm out and turn his head to the left simultaneously.

‘There is no way to explain this act, you just had to see it. I tried everything to see if I was imagining it or if something wasn’t right.

‘I was so blind to the true hardships in life and without warning, my life changed in an instant. Did I even blink? Had I been dreaming all along?’

In the morning, Leah’s mother helped her to give Jack a little sponge bath. He seemed rigid, and by that point Leah was very concerned.

‘I was done. I called the pediatrician and we went back in the next morning. Jack was just five days old.’

Despite Leah’s worry, she says the staff at the hospital didn’t take her concern very seriously, until a nurse approached them and noticed something wasn’t right.

‘Before I knew it there were six or seven nurses in the room, all crowded around Jack trying to help him and my husband and I faded into the background as they worked,’ Leah said.

‘I have never been so scared in my life.’

It was soon decided that Jack needed to be sent to Children’s Healthcare of Atlanta (CHOA), the best pediatric specialists in the state.

‘I was terrified because this confirmed that something bad was happening to our newborn son,’ Leah said.

Jack only got worse. He was in and out of the hospital with hard-to-control seizures, put on a myriad of medications, and still no answers.

When he was almost three months old, he was in status again and admitted to the PICU.

That’s when a neurologist ordered an MRI and concluded that Jack had Mitochondrial disease. The doctor told Leah her son’s brain has begun to atrophy and would continue to until he died.

‘They told us there was no hope,’ she said.

That changed a few days later when the results from their genetic tests came back.

His form of epilepsy is rare but manageable – but doctors warned that if he’d been diagnosed any later, he could have suffered sinister consequences.

‘His treatment for the first six months of his life had been all wrong, almost detrimental to him,’ Leah said.

‘We immediately saw a neurologist, genetics, nutrition, all the specialists we needed to get Jack on the right track.

‘We have been working so hard ever since with six therapies per week for Jack and lots of work at home. He still has many delays and a few new diagnoses, but he has a great quality of life.’

Jack has had numerous types of seizures in the first six months of his life such as; tonic-clonic, partial, focal, absence, gelatic, dacrystic and even some where he just has constant hiccups, but it’s under control now.

Leah says their support network has been key to making it through – and now she hopes to pay it forward.

‘Everyone has been incredibly supportive throughout the entire journey and still are. We could not have made it through any of this without our amazing support system.

‘I have a few things that I am incredibly passionate about and want to work on in the future. First and foremost, I want PDE added to the new-born screening.’


Pediatric epilepsy, febrile seizures raise neuropsychiatric risk

Pediatric epilepsy, febrile seizures raise neuropsychiatric risk

Children who have epilepsy or febrile seizures may have increased risk for later neuropsychiatric conditions.

Neuropsychiatric conditions are mental disorders that are typically attributed to diseases that originate from the nervous system. These diseases greatly impair the health of those affected by them and impact their ability to learn, work, and emotionally cope.  Common neuropsychiatric disorders include seizures, attention deficits, cognitive deficits, palsies, uncontrolled anger, migraine headaches, addictions, eating disorders, depression, and anxiety and others. They can range widely in cause, course, and severity.

Epilepsy seems tied to greater risk than febrile seizures, and events in the first decade of life were tied to greater neuropsychiatric vulnerabilities in adolescence and adulthood.

Why does this matter

Authors of a recent study say that these associations are “more modest” than previously reported for some conditions.

What are the symptoms of neuropsychiatric disorders?

The key component of neuropsychiatric disorders is that the symptoms tend to impact brain function, emotion and mood. These can range from problems with focus and learning in the case of ADHD to sadness, irritability, memory problems, mood problems, depression to a variety of other psychiatric and/or neurological symptoms.

What are neuropsychiatric disorder care options?

Medications, psychological and/or psychiatric therapy are common treatments for neuropsychiatric disorders. Specific treatments will vary based on the precise cause, clinical presentation and severity.

Key results

  • With epilepsy, risk increased for (HRs; 95% CIs):
    • Any psychiatric disorder: 1.34 (1.25-1.44).
    • Schizophrenia spectrum disorders: 1.50 (1.26-1.78).
  • With febrile seizures, risk increased for:
    • Any psychiatric disorder: 1.12 (1.08-1.17).
    • Schizophrenia spectrum disorders: 1.23 (1.11-1.35).
  • With both, risk increases were:
    • Any disorder: 1.50 (1.28-1.75).
    • Schizophrenia spectrum disorders: 2.75 (2.03-3.73).
  • No increased risk for substance abuse disorders.
  • Febrile seizure-associated risks increased with number of events involving hospital contact.
  • Seizure etiology, onset type (i.e., focal vs generalized) did not change associations.

The study used a Danish registry of 1,291,679 individuals (43,148 febrile seizure history; 10,355 epilepsy; 1696 both), born January 1, 1978 through December 31, 2002 and was funded by the Novo Nordisk Foundation and the Danish Epilepsy Association along with some others.

Pediatric epilepsy may be misdiagnosed as GI disease

Pediatric epilepsy may be misdiagnosed as GI disease

More than 2% of children with West syndrome, temporal lobe epilepsy, or Panayiotopoulos syndrome initially were misdiagnosed with gastrointestinal disorders, according to the results of a large single-center retrospective study.

Such misdiagnoses caused substantial diagnostic delays, increased the risk of cognitive deterioration, and exposed children to inappropriate radiation and invasive procedures, reported Giulia Carbonari and her associates at the University of Bologna, Italy.

The results of this study suggest that epileptic spasms of West syndrome often are misdiagnosed as symptoms of gastroesophageal reflux disease (GERD). Thus, clinicians should consider epilepsy in the differential diagnosis of atypical gastroesophageal reflux in young children, the researchers wrote. The report was published online in Epilepsy & Behavior.

Several recent case reports have described pediatric epilepsies that were misdiagnosed and treated as gastrointestinal (GI) disorders. To better frame the problem, the investigators reviewed the medical records of 858 consecutive children with epilepsy treated at their center between 2010 and 2015.

A total of 21 patients (2.4%) were initially misdiagnosed with GI disease. Most were younger than 1 year old. Notably, 7 of 27 children (26%) with West syndrome were misdiagnosed – in six cases with GERD, and in one case with infant colic. In addition, 10 of 24 children (42%) with temporal lobe epilepsy were misdiagnosed with GERD (five cases), recurrent abdominal pain (two cases), or cyclic vomiting, gastric pain, or dysfunctional elimination syndrome (one case each). Finally, 4 of 38 children (11%) with Panayiotopoulos syndrome were misdiagnosed with cyclic vomiting (three cases) or GERD (one case).

Misdiagnoses typically caused at least a 3-month diagnostic delay (interquartile range, 2-18 months), and half of misdiagnosed children received inappropriate abdominal ultrasonography, upper alimentary canal radiography, or esophagogastroduodenoscopy. Eight patients also received inappropriate antireflux therapy, and one patient underwent inappropriate surgery, the researchers said.

They shared tips for avoiding these misdiagnoses. Epileptic spasms of West syndrome involve brief contractions (flexion or extension) of the neck, trunk, and extremities, usually in clusters. Psychomotor slowing also is common. Seizures in temporal lobe epilepsy often involve automatisms, mental status changes, and changes in skin color, blood pressure, and heart rate. Signs of Panayiotopoulos syndrome include emesis, cyanosis, pallor, changes in intestinal motility, gaze deviation, hypotonia, confusion, and unresponsiveness.