Munchausen by proxy 2

Maya Kowalski, the 17-year-old who was awarded more than $260 million in damages and punitive damages in her civil lawsuit against a Florida children's hospital, has filed a sexual assault complaint against the hospital, according to her attorney. 

Maya; her father, Jack Kowalski; and her brother, Kyle Kowalski, accused staff at Johns Hopkins All Children's Hospital (JHAC) in St. Petersburg of falsely imprisoning Maya, fraudulently billing their family and causing their family severe emotional distress. They said the hospital's actions, including making medical abuse allegations against Maya's mother, Beata Kowalski, drove Beata to suicide in 2017.

The case took the country by storm after it inspired the popular documentary series "Take Care of Maya," which follows the story of Maya and Beata as they navigated Maya's rare, chronic neurological condition called complex regional pain syndrome (CRPS) – an obscure condition that causes severe pain throughout a person's body due to nervous system dysfunction, according to the Cleveland Clinic.

"I am claiming that there was sexual abuse. It's something that I was quite quiet about for a couple of years because I was worried it wasn't going to be taken seriously," Maya told Fox News' Martha MacCallum on Thursday.

Ethen Shapiro, an attorney from Hill Ward Henderson who represented JHAC in the case, told Fox News Digital in a statement that Maya's "allegations originally arose during trial and were not admitted into the case."

"As soon as the hospital became aware of the allegations, and in accordance with their policies, they immediately initiated an internal investigation and contacted law enforcement last month," Shapiro said. "Federal privacy laws restrict Johns Hopkins All Children’s Hospital from sharing more, but the hospital takes allegations of this nature very seriously and always puts the safety of their patients above all else."

In 2016, Maya was admitted to JHAC for severe pain caused by her CRPS, which was previously diagnosed by another Florida doctor. 

Later that year, a court order removed Maya from the custody of her parents after staff accused Beata of medical abuse, saying that she exhibited signs of Munchausen by proxy, in part because Beata was insisting to JHAC that Maya needed heavy doses of ketamine to ease her pain. 

"It's absolutely preposterous that someone would say that my mother was forcing these symptoms onto me. You have to remember – her and I both – we didn't know what I had. No one did. So, she couldn't come up with a list of symptoms and make up this disease," Maya said Thursday.

Beata hanged herself in her garage in January 2017 after being separated from her hospitalized daughter for months. 

"I know that my mom gave up her life for me. I understood that at the age of 11 years old," Maya continued. "Now, I try to go on. I try to live my life as positively as I can, but I want people to know that in her doing that, she wasn't giving up. As a matter of fact, in her doing that, that’s the only way she saw for us to win."

Her attorney, Greg Anderson, noted that JHAC continued to bill the Kowalski family for CRPS even after saying Maya did not have the condition and accusing her mother of making up Maya's symptoms for her. 

"There were medical records within Johns Hopkins where they had seen her 17 times," Anderson told MacCallum. "This was not her first visit there, and since the diagnosis by Dr. Kirkpatrick at the RSD institute, everyone had adopted that CRPS, but on this one evening, a team of ER doctors decided for whatever reason that they would go against five different experts and decide that it didn't meet their own internal protocols… and change everything."

Multiple witnesses, including health care professionals at JHAC, testified during the trial that Beata had been exhibiting signs of Munchausen by proxy and that Maya's perceived CRPS symptoms had been driven by her mother. Munchausen by proxy is a psychological disorder in which an abusive parent or caretaker makes up or causes an illness for a person under their care – often the parent's own child – who is not actually ill. 

The defense argued over the course of the trial that hospitals have a responsibility to report abuse when they see it, and in Maya's case, doctors agreed that Beata was exhibiting abusive behavior, including what they described as unsafe doses of ketamine Beata gave her daughter.

"One of the most unfortunate parts of this case is the caption: Kowalskis v. All Children's. We were never against the Kowalski family," attorney Ethen Shapiro, who represented JHAC, said in his closing statements. "The reason why All Children's did what it did, the reason why All Children's tried to comfort Maya, the reason why All Children's tried to get her on a safe medical path is because the loving and caring providers at my clients' hospital believed in a better future for her if they could get her off the unnecessary drugs given at dangerous levels."

Howard Hunter, an attorney with Hill Ward Henderson who representing JHAC in this case, thanked the jury for their "time and attention" in a statement to Fox News Digital. He added that JHAC plans to appeal the decision "based on clear and prejudicial errors throughout the trial and deliberate conduct by plaintiff’s counsel that misled the jury."

"The evidence clearly showed that [JHAC] followed Florida’s mandatory reporting law in reporting suspected child abuse and, when those suspicions were confirmed by the district court, fully complied with Department of Children and Families (DCF) and court orders," Hunter said.

"We are determined to defend the vitally important obligation of mandatory reporters to report suspected child abuse and protect the smallest and most vulnerable among us. The facts and the law remain on our side, and we will continue to defend the lifesaving and compassionate care provided to Maya Kowalski by the physicians, nurses and staff of Johns Hopkins All Children’s Hospital and the responsibility of all mandatory reporters in Florida to speak up if they suspect child abuse."

https://www.foxnews.com/us/maya-kowalski-files-sexual-assault-complaint-against-childrens-hospital-after-lawsuit-win

MECP2 duplication syndrome

Inspired by a patient

Kim TY, Lee SJ, Kim KM, Cho SR. MECP2 duplication syndrome initially misdiagnosed as cerebral palsy: a case report. J Int Med Res. 2023 Mar;51(3):3000605231162452. doi: 10.1177/03000605231162452. PMID: 36988314; PMCID: PMC10064467.

Abstract

Mutations in the X-linked methyl-CpG-binding protein 2 (MECP2) gene were first described as a cause of Rett syndrome. MECP2 duplication can cause intellectual disability, developmental delay, severe feeding difficulties, and recurrent infections. Here, we report a Korean family with MECP2 duplication syndrome, which was previously misdiagnosed as cerebral palsy. A man in his early 30 s visited our clinic with intellectual disability, speech impairment, epilepsy, and progressive spasticity. He had been previously misdiagnosed with cerebral palsy, and had received orthopedic surgeries such as musculotendinous lengthening and derotational osteotomy. After the surgeries, he received comprehensive rehabilitation. Upon carefully checking his family history, we noted that his younger brother had similar symptoms. Next-generation sequencing revealed whole exon duplication in MECP2 in both the patient and his brother; their mother also had this genetic mutation but was asymptomatic. Early diagnosis is essential for improving the success of MECP2 duplication syndrome treatment. Individuals with MECP2 duplication syndrome should be referred to specialists to manage multidisciplinary symptoms and to regularly check for complications that are common in this syndrome.

Ak M, Suter B, Akturk Z, Harris H, Bowyer K, Mignon L, Pasupuleti S, Glaze DG, Pehlivan D. Exploring the characteristics and most bothersome symptoms in MECP2 duplication syndrome to pave the path toward developing parent-oriented outcome measures. Mol Genet Genomic Med. 2022 Aug;10(8):e1989. doi: 10.1002/mgg3.1989. Epub 2022 Jun 15. PMID: 35702943; PMCID: PMC9356562.

Abstract

Background: MECP2 Duplication Syndrome (MDS), resulting from the duplication of Xq28 region, including MECP2, is a rare disorder with a nascent understanding in clinical features and severity. Studies using antisense oligonucleotides revealed a broad phenotypic rescue in transgenic mice. With human clinical trials on the horizon, there is a need to develop clinical outcome measures for MDS.

Methods: We surveyed caregivers of MDS individuals to explore the frequency and severity of MDS clinical features, and identify the most meaningful symptoms/domains that need to be included in the outcome measure scales.

Results: A total of 101 responses were eligible for the survey. The top six most meaningful symptoms to caregivers in descending order included epilepsy, gross motor, fine motor, communication, infection, and constipation problems. Epilepsy was present in 58.4% of the subjects and 75% were drug-resistant, Furthermore, ~12% required intensive care unit (ICU) admission. Infections were present in 55% of the subjects, and one-fourth of them required ICU admission. Constipation was present in ~85% of the subjects and one-third required enemas/suppositories.

Conclusion: Our study is one of the largest cohorts conducted on MDS individuals characterizing the frequency and severity of MDS symptoms. Additionally, these study results will contribute to establishing a foundation to develop parent-reported outcomes in MDS.

John Cherian D, Ta D, Smith J, Downs J, Leonard H. How Families Manage the Complex Medical Needs of Their Children with MECP2 Duplication Syndrome. Children (Basel). 2023 Jul 11;10(7):1202. doi: 10.3390/children10071202. PMID: 37508699; PMCID: PMC10377896.

Abstract

MECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder resulting from the duplication of the methyl-CpG-binding protein 2 (MECP2) gene. The clinical features of MDS include severe intellectual disability, global developmental delay, seizures, recurrent respiratory infections, and gastrointestinal problems. The aim of this qualitative study was to explore how the parents of children with MDS manage their child's seizures, recurrent respiratory infections, and gastrointestinal symptoms, and the impact on them as parents. The data were coded into three categories: (1) complex care needs in the home, (2) highly skilled caregivers, and (3) impact on caregivers and families. Complex 24 h care was required and parents developed complex skillsets to ensure that this was delivered well to their child. The provision of extensive complex medical care in the home had an impact on parent mental and physical health, family dynamics, and finances. This study captures the management of high-burden comorbidities in MDS at home. Investigations into how best to support caregiver wellbeing to reduce their stresses, whilst maintaining optimal child health and wellbeing, are needed.

Ak M, Akturk Z, Bowyer K, Mignon L, Pasupuleti S, Glaze DG, Suter B, Pehlivan D. Assessing the Burden on Caregivers of MECP2 Duplication Syndrome. Pediatr Neurol. 2022 Aug;133:1-8. doi: 10.1016/j.pediatrneurol.2022.05.008. Epub 2022 May 25. PMID: 35716604.

Abstract

Background: MECP2 duplication syndrome (MDS) is a rare neurogenetic disorder characterized by severe neurodevelopmental disorder, refractory epilepsy, recurrent infections, and functional gastrointestinal problems. Because of the significant clinical problems and lifelong disability of children with this disorder we hypothesized that the burden on parents/caregivers of these children is significant. However, there are no reports of the impact on caregivers of individuals with MDS.

Methods: We developed and validated a burden scale to investigate the challenges of caregivers of children and adults with MDS and identified factors contributing to the burden on caregivers. We developed a Health Insurance Portability and Accountability Act-compliant patient registry for families with MDS and delivered caregiver burden survey through the registry.

Results: Of 237 completed surveys, 101 were eligible for the study. We identified increased levels of self-perceived anxiety, depression, and emotional exhaustion in caregivers that correlated with higher burden scores. Epilepsy was the only clinical feature that caused a higher burden in caregivers of individuals with MDS. In addition, a higher burden was found in Hispanic caregivers. The duration of care negatively correlated with burden score.

Conclusions: This is the first study to investigate the burden on caregivers of individuals with MDS and identify several factors contributing to increased burden. Addressing these concerns has the potential to improve the health of individuals with MDS and contribute to the well-being of their caretakers.

Death at the order of the United Kingdom court

An 8-month-old infant in the United Kingdom has been given more time to live after an appeal suspended a judge's mandate that she be removed from life support.

Justice Robert Peel ruled Wednesday that Indi Gregory was to be removed from her life-supporting ventilator on Thursday against the parents' wishes.

Now, the Gregory family has successfully launched an appeal to that mandate, hoping to negotiate the right to seek continued treatment overseas.

Indi Gregory was born in February of this year and suffers from a degenerative mitochondrial disease that will very likely take her life.

In a bid to escape the mandate to remove life support, the Gregorys made emergency arrangements with leadership at the Vatican for her to continue treatment at Bambino Gesù, a Catholic pediatric hospital in Rome.

The parents also secured Italian citizenship for Indi directly from the Italian prime minister.

"They say there isn’t much hope for little Indi, but until the very end, I’ll do what I can to defend her life, and to defend the right of her mamma and papa to do all that they can for her," Italian Prime Minister Giorgia Meloni wrote on social media this week.

The Court of Appeals will hear the Gregorys' case on Nov. 10. 

Doctors at Queen's Medical Center in Nottingham will not be allowed to remove the infant from life support until the conclusion of the appeals process.

The Italian government has pressed the U.K. courts heavily to turn the child over to their custody.

"Earlier today, with the clock ticking, Indi's Italian guardian made an urgent application to the U.K. High Court calling on Mr Justice Robert Peel to cede jurisdiction of the case to him under Article 9§2 of the 1996 Hague Convention," religious legal group Christian Concern explained Friday.

Christian Concern hopes that the increasingly international nature of the case will force the courts to back down, claiming that "such a development has never happened before in an end-of-life case involving a child in the U.K."

https://www.foxnews.com/world/terminally-ill-uk-baby-gets-more-time-live-parents-fight-judge-bring-vatican-hospital

Elemental dynamics in hair accurately predict future autism spectrum disorder diagnosis

Mirabile dictu

Austin C, Curtin P, Arora M, Reichenberg A, Curtin A, Iwai-Shimada M, Wright RO, Wright RJ, Remnelius KL, Isaksson J, Bölte S, Nakayama SF. Elemental Dynamics in Hair Accurately Predict Future Autism Spectrum Disorder Diagnosis: An International Multi-Center Study. J Clin Med. 2022 Dec 1;11(23):7154. doi: 10.3390/jcm11237154. PMID: 36498727; PMCID: PMC9740182.

Abstract

Autism spectrum disorder (ASD) is a neurodevelopmental condition diagnosed in approximately 2% of children. Reliance on the emergence of clinically observable behavioral patterns only delays the mean age of diagnosis to approximately 4 years. However, neural pathways critical to language and social functions develop during infancy, and current diagnostic protocols miss the age when therapy would be most effective. We developed non-invasive ASD biomarkers using mass spectrometry analyses of elemental metabolism in single hair strands, coupled with machine learning. We undertook a national prospective study in Japan, where hair samples were collected at 1 month and clinical diagnosis was undertaken at 4 years. Next, we analyzed a national sample of Swedish twins and, in our third study, participants from a specialist ASD center in the US. In a blinded analysis, a predictive algorithm detected ASD risk as early as 1 month with 96.4% sensitivity, 75.4% specificity, and 81.4% accuracy (n = 486; 175 cases). These findings emphasize that the dynamics in elemental metabolism are systemically dysregulated in autism, and these signatures can be detected and leveraged in hair samples to predict the emergence of ASD as early as 1 month of age.

Munchausen by proxy

Lawyers defending Johns Hopkins All Children's Hospital (JHAC) in a $220 million medical malpractice lawsuit waged by Maya Kowalski and her family showed jurors photos of the teenager smiling at prom, homecoming and for Halloween.

The 17-year-old, whose story was the subject of the Netflix documentary "Take Care of Maya," is suing the Florida hospital after a saga that led to her mother Beata Kowalski's suicide following accusations of Munchausen syndrome by proxy.

Maya's attorney Gregory Anderson told Court TV on Oct. 27 that the symptoms of his client's complex regional pain syndrome (CRPS) — a poorly understood neuropathic condition — have worsened amid the stressors of the ongoing trial. 

Due to her "flare-up," the teen was unable to attend court hearings for several days, Anderson said. But attorneys for JHAC showed photos of Maya posing in dresses, heels and even a skimpy angel Halloween costume on Tuesday, saying the snaps of the teen out on the town contradicted those claims. 

For nearly six weeks, jurors have heard testimony from experts and Maya's doctors and nurses at the Florida hospital.

JHAC called the child abuse hotline after Beata, a registered nurse, insisted that the then-10-year-old Maya needed what the hospital claimed was a dangerously high amount of ketamine to treat a flare-up of her chronic pain in 2016.

Previously, the family told hospital staff, the girl had undergone an experimental ketamine coma in Mexico that has not been approved for treatment in the U.S. 

Staff reported Beata for medical child abuse, leading a judge to order Maya's separation from her family in 2016 for more than 80 days. JHAC's attorney Ethen Shapiro told reporters recently that the hospital's intervention is what "[got Maya to] where we see her today — walking in and out of court, going to homecoming, living a more normal teenage life." 

"A lot of the world is watching. This is potentially a very chilling case for mandatory reporting," Shapiro said in an audio clip provided to Fox News Digital. "Hopefully by mandatory reporters seeing that we're sticking up for them... [and it] will help affirm their duties." 

But Maya and her family allege that reporting Beata for Munchausen syndrome by proxy and forcibly separating the family amounted to false imprisonment, medical malpractice and infliction of emotional distress — and led Beata to hang herself in the family's garage in January 2017.

A doctor who had previously prescribed Maya's ketamine treatments told the court that his prescribed regimen was medically sound — but, in opposition, emeritus professor of anesthesiology and chief of pain management at the Stanford School of Medicine Dr. Elliot Krane told the court this week that the experimental treatment was dangerous and illegal in the U.S. 

In previous court hearings, JHAC's attorney Howard Hunter said JHAC believed Maya was "given levels of medication they had never heard of before, that the literature did not support," per earlier reporting by Fox News Digital.

Staff made the call fearing that Maya's mother suffered from Munchausen by proxy and was making her daughter sick, Hunter has argued. 

In court, the teen has said that the ketamine treatment improved symptoms that would leave her screaming in pain. 

"This is the life of Maya Kowalski today," Shapiro told the court. "We did not aggravate a pre-existing condition. She's at her prom, she's out in heels, has friends — it's in complete contradiction to her testimony. 

Several of the social media photos were admitted into evidence despite protests from Maya's attorneys. 

Before resting its case, the defense showed video depositions from Maya, her father Jack Kowalski and her uncle Scott Kowalski. 

Maya said in her deposition that her symptoms have receded – she currently only takes Claritin for allergies and a sleeping pill, she said, and enjoys running, swimming and ice skating. 

Jack testified that he no longer sees signs of his daughter's alleged CRPS.

But in her rebuttal, Maya told the court that her smiling photos at prom and other events are not proof that she is no longer in pain, and that she often masks her symptoms. 

"I cried for an hour to my dad before that picture was taken because of how bad my leg pain was," she told jurors on Tuesday. "I wasn't sure if I was going to be able to go. That was my physical condition and mental condition." 

The teen explained that she didn't want to disappoint her boyfriend, who had already purchased tickets for the homecoming dance where she was pictured. 

"I did not post that picture, meaning the defense went as far as to look up my friends' account," she continued.

Maya testified that her pain level was at a "seven or eight" that day, per courtroom footage. Her current symptoms, she said, include lesions and discolorations in her right leg. She currently experiences involuntary jerking in her body, she said — those jerking motions started "after Johns Hopkins Children's Hospital," she said Tuesday.

Shapiro said after court Tuesday, per a recording shared with Fox News Digital, that he was "very confident" after his closing arguments. 

Staff at JHAC suspected that Beata Kowalski was suffering Munchausen syndrome by proxy after she pushed for unapproved ketamine treatment for her daughter's condition. (WTVT)

JHAC previously told Fox News Digital in a statement that the hospital's priority is "always the safety and privacy" of its "patients and their families."

https://www.foxnews.com/us/take-care-maya-trial-pics-plaintiff-220m-hospital-lawsuit-create-controversy-amid-explosive-case

Vinpocetine for GABR mutations

Mandelenaki D, Juvené E, Gederer D, Aeby A. Precision medicine: Vinpocetine as a potential treatment for GABRG2-related epilepsy. Epileptic Disord. 2023 Jun;25(3):383-389. doi:10.1002/epd2.20015. Epub 2023 May 25. PMID: 37536979.

Abstract

Introduction: Pathogenic variants of the GABRG2 gene, encoding a GABAA receptor subunit, have been associated with various epileptic syndromes and drug-resistant epilepsy. Vinpocetine has been previously reported efficacious in a patient harboring a GABRB3 pathogenic variant, encoding another GABAA receptor subunit.

Case presentation: We describe a patient with GABRG2-related drug-resistant epilepsy who improved after vinpocetine treatment. An 8-year-old boy with a family history of epilepsy was diagnosed with early onset absence epilepsy at 6 months of age and was treated unsuccessfully with sodium valproate and ethosuximide. At 6 years of age, he developed generalized tonic-clonic seizures and increasing absences despite lamotrigine add-on as well as learning difficulties. Brain MRI was normal and video-EEG telemetry showed multiple myoclonic absences. An epilepsy gene panel analysis showed a GABRG2 pathogenic variant, c.254 T > A p.(Ile85Lys) (NM_198903.2), inherited from the proband's father. Seizures were resistant to several medications. After treatment with vinpocetine add-on, the patient showed a dramatic initial response, further reduction of seizures, and improvement of his cognitive functions.

Conclusion: This case illustrates that vinpocetine could be considered in drug-resistant epilepsies related to GABRG2 in accordance with the principles of precision medicine.

Billakota S, Andresen JM, Gay BC, Stewart GR, Fedorov NB, Gerlach AC, Devinsky O. Personalized medicine: Vinpocetine to reverse effects of GABRB3 mutation. Epilepsia. 2019 Dec;60(12):2459-2465. doi: 10.1111/epi.16394. Epub 2019 Nov 22. PMID: 31755996; PMCID: PMC7004153.

Abstract

Objective: To screen a library of potential therapeutic compounds for a woman with Lennox-Gastaut syndrome due to a Y302C GABRB3 (c.905A>G) mutation.

Methods: We compared the electrophysiological properties of cells with wild-type or the pathogenic GABRB3 mutation.

Results: Among 1320 compounds, multiple candidates enhanced GABRB3 channel conductance in cell models. Vinpocetine, an alkaloid derived from the periwinkle plant with anti-inflammatory properties and the ability to modulate sodium and channel channels, was the lead candidate based on efficacy and safety profile. Vinpocetine was administered as a dietary supplement over 6 months, reaching a dosage of 20 mg three times per day, and resulted in a sustained, dose-dependent reduction in spike-wave discharge frequency on electroencephalograms. Improved language and behavior were reported by family, and improvements in global impression of change surveys were observed by therapists blinded to intervention.

Significance: Vinpocetine has potential efficacy in treating patients with this mutation and possibly other GABRB3 mutations or other forms of epilepsy. Additional studies on pharmacokinetics, potential drug interactions, and safety are needed.

Gjerulfsen CE, Mieszczanek TS, Johannesen KM, Liao VWY, Chebib M, Nørby HAJ, Gardella E, Rubboli G, Ahring P, Møller RS. Vinpocetine improved neuropsychiatric and epileptic outcomes in a patient with a GABRA1 loss-of-function variant. Ann Clin Transl Neurol. 2023 Aug;10(8):1493-1498. doi: 10.1002/acn3.51838. Epub 2023 Jul 11. PMID: 37434477; PMCID: PMC10424645.

Abstract

Vinpocetine is a synthetic derivative of the alkaloid vincamine and has been used as a dietary supplement for decades. Following a positive report of the use of vinpocetine in a patient with a loss-of-function GABRB3 variant, we here describe another patient with a loss-of-function GABRA1 variant (p.(Arg112Gln)) who benefited from vinpocetine treatment. This patient was diagnosed with autism spectrum disorder, psychiatric complications, and therapy-resistant focal epilepsy. Upon add-on treatment with 40 mg vinpocetine daily for 16 months, the patient experienced an overall improved quality of life as well as seizure freedom. Our findings corroborate that vinpocetine can attenuate epilepsy-associated behavioral issues in patients with loss-of-function GABAA receptor gene variants.

Febrile seizures

 In a matter of seconds, Kelly Herrmann’s son Howie went from sleeping in her arms to having a seizure.

She recognized he was having a seizure but didn’t know why.

“I was holding him, and he started to turn blue and stopped breathing. I honestly thought he was dying in my arms,” she said.

Earlier in the day, Howie’s day care called Herrmann and said he had a fever. Little did Herrmann or her husband Seth Moser know, a fever in children sometimes causes what’s known as a febrile seizure.

Febrile seizure, explained

Mohamad Saifeddine, M.D., is a pediatric neurology specialist at Sanford Health in Sioux Falls, South Dakota. He said sometimes a febrile seizure can be caused from a brain infection but oftentimes, like in Howie’s case, it’s caused from a fever.

“A febrile seizure is a seizure that happens in the setting of fever. That means the seizure itself is abnormal firing of electricity in the brain, that spreads throughout the brain and causes the child to have different movements and being unconscious,” he said.

How common are febrile seizures?

Dr. Saifeddine said it’s actually a very common condition in children, particularly in children between the ages of one and a half years old to three years of age.

“Statistically, it’s up to 2-5% of kids actually going to have at least one febrile seizure in their lifetime,” he said.

These types of seizures typically last one to two minutes, but “it can be shorter and unfortunately it can be longer,” Dr. Saifeddine explained.

Related: Stroke or seizure? It can be a fine line between the two

If a seizure lasts longer than three to five minutes, it’s called a “status.” Meaning, the prolonged seizure is not stopping by itself.

“That’s when we need to ask or seek medical help for any parents. That’s when parents should come to the ER or call 911,” he said.

What if my child is having a febrile seizure?

According to Dr. Saifeddine, the most important thing a parent can do when their child is having a seizure, whether it’s febrile or not, “is to put the child on their side.”

“Do not put anything in their mouth, and make sure that the child doesn’t have something sharp or hard under their head, so if the child is actually seizing, meaning they’re having whole-body jerking, they won’t hit their head with something that can injure themself,” he said.

He said it can be an extremely difficult thing to remember to do, but he recommends someone checks the time while the child is having the seizure.

“If the seizure is more than two or three minutes and the child is not waking up, somebody (then) has to call 911.”

‘It was confusing and also a relief’

When Howie was having his febrile seizure, Hermann rushed over to her neighbors, Howie still blue in her arms, and asked them to call 911.

Thankfully, when the ambulance arrived, Howie’s febrile seizure had stopped. The EMT explained to Herrmann that Howie most likely had a febrile seizure, and that it was very common.

Seek care: Well child visits important for children of all ages

Herrmann, having never heard of a febrile seizure or that it’s often caused by a fever, had questions swirling.

“If it was so common, how did I not know what that was? His fever was so low. It 100.4, and even in the ambulance, it was still only 100.5 or so. So, in my mind it just didn’t make sense, because yes, he had a fever, but just barely. It wasn’t anything too high,” Hermann said.

“So, it was like a relief, but also I was still confused. I was still worried that something was wrong. I was worried he was going to have another one. Despite learning more from the care team, it was still really confusing and scary,” she added.

Howie is home and doing just fine, a relief to is entire family.

Herrmann said her take home message for parents is to know febrile seizures exist and be prepared if their child has one.

“Don’t put anything in their mouth, and try to keep the airway open. Pay attention to how long it’s lasting, because if it lasts a really long time, that can be a problem.”

https://news.sanfordhealth.org/childrens/post-febrile-seizure-family-grateful-for-care-at-sanford/