Internal decapitation 4

An Illinois woman is detailing her remarkable and lengthy recovery journey after being internally decapitated in a life-changing accident.

Megan King was 16 years old when she fell to the ground while trying to jump and catch a soccer ball during her high school gym class. The accident, which occurred in 2005, left her with damage to her right ankle and spine. She also tore the muscle off both shoulder blades, according to the Daily Mail.

Per the outlet, King spent more than a year on crutches, but her condition got worse instead of better, causing her unbearable pain. Over the years, she underwent 22 surgeries but doctors were left stumped as she was unable to heal properly.

In 2015, doctors finally diagnosed King with Hypermobile Ehlers-Danlos syndrome (hEDS).

Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls, according to the Mayo Clinic. Symptoms include overly flexible joints and stretchy, fragile skin. The most common type of the disorder is hEDS, and people diagnosed with it often deal with joint pain and easy dislocations.

A year after her diagnosis, King was fitted for a halo brace to stabilize her neck and spine. However, while removing the brace, she was internally decapitated, per the Daily Mail. 

Atlanto-occipital dislocation (AOD) — also known as orthopedic decapitation or internal decapitation — occurs when ligaments and/or bony structures connecting the skull to the spine are damaged, according to a paper published in the World Journal of Orthopedics. 

“I flew my chair back to keep gravity from decapitating me,” King, now 35, told the Daily Mail. “My neurosurgeon had to hold my skull in place with his hands. I couldn't stand. My right side was shaking uncontrollably.”

AOD is typically fatal, with 90% of cases resulting in immediate death. However, doctors were able to rush King into emergency surgery and perform a spinal fusion to reconnect her skull and spine. The bones are fused together and heal as one.

 “It was a horror show,” she recalled, per the outlet. “I woke up unable to move my head at all.”

King was able to survive the harrowing ordeal, but has since had 37 surgeries in her recovery journey. The accident left her fused from her skull down to her pelvis, and she can no longer shift her head in any direction. “I'm literally a human statue,” she said. “My spine doesn't move at all. But that doesn't mean I've stopped living.”

According to the U.K. publication, doctors told King that her internal decapitation was likely due to a combination of her fall in high school as well as her weakened joints from living with hEDS.

Now, 20 years later, King is slowly but surely starting to return to her normal activities, boasting that she was able to go bowling recently. “I bowled a strike — on my very first try. My friends screamed and clapped and cheered like wild. They weren’t just celebrating the strike. They were celebrating everything I’ve survived,” she said, per the outlet.

King added, “I’m still learning what my new body can do. It’s not easy, but I’m adapting. And I’m always surprised by what I can still accomplish.”

https://people.com/decapitated-woman-is-a-human-statue-after-doctors-reattach-her-skull-11717350

A 12-year-old boy from Jerusalem, Israel is recovering after surgeons reattached his head following a bike accident that left him internally decapitated.

Suleiman Hassan’s “routine bike ride almost ended in disaster” when he “was forcefully run over by a wild driver," said the hospital in Jerusalem where the surgery took place — Hadassah Medical Center Ein Kerem — in a statement on their website.

“The injury left him with a fracture in the head and neck joint and tears in all his supporting ligaments,” they continued, adding that Hassan “was turned to Hadassa Ein Kerem by helicopter and was immediately admitted for a long and complex emergency surgery.”

“Due to the serious injury the head almost completely disconnected from the base of the neck," said Dr. Ohad Einav, a specialist orthopedist who performed the surgery on Hassan, in the statement.

Dr. Ziv Asa — another surgeon involved in the operation — said that there is typically a "50% chance of survival" for a case like Hassan’s. "Despite the serious injury — the surgery went very successfully, and Suliman was released to his home with a neck fixed and under close supervision of the hospital staff," the statement continued.

On Instagram, the hospital shared an image of Hassan with Einav and Asa following what they described in the post's caption as an "extremely rare and complex operation," where Hadassah Medical Center surgeons "reattached a 12-year-old boy’s head to his neck after a serious accident in which he was hit by a car while riding his bicycle."

The caption on the July 6 post continued, "Suleiman Hassan, from the Jordan Valley, was airlifted to Hadassah’s trauma unit in Ein Kerem, where it was determined that the ligaments holding the posterior base of his skull were severed from the top vertebrae of his spine. The condition, bilateral atlanto occipital joint dislocation, is commonly known as internal or orthopedic decapitation. The injury is very rare in adults, and even more so in children."

Atlanto-occipital dislocation (AOD), is also known as orthopedic decapitation or internal decapitation and occurs when ligaments and/or bony structures connecting the skull to the spine are damaged, according to a paper published in the World Journal of Orthopedics. It is a common cervical spine injury in motor vehicle accident deaths.

“We fought for the boy’s life,” Einav told The Times of Israel. “The procedure itself is very complicated and took several hours. While in the operating room, we used new plates and fixations in the damaged area… Our ability to save the child was thanks to our knowledge and the most innovative technology in the operating room.”

“The injury is extremely rare,” he added, “but we do know that because children between ages four and 10 have heads that are large in relation to their bodies, they are more susceptible than adults.”

The surgery was carried out in June, but the doctors waited a month to reveal the outcome, Fox News reported. Hassan was recently sent home from the hospital with a neck brace and will remain under medical supervision, according to the outlet.

"The fact that such a child has no neurological deficits or sensory or motor dysfunction and that he is functioning normally and walking without an aid after such a long process is no small thing," Einav said, according to the outlet.

Hassan’s father did not leave his son’s bedside during his recovery, the medical staff said, per The Times of Israel.

“I will thank you all my life for saving my dear only son,” the boy’s father said. “Bless you all. Thanks to you he regained his life even when the odds were low and the danger was obvious. What saved him were professionalism, technology and quick decision-making by the trauma and orthopedics team. All I can say is a big thank you.”

https://people.com/doctors-reattach-12-year-old-boy-s-head-after-bike-accident-7561123

CT scans and cancer

Smith-Bindman R, Chu PW, Azman Firdaus H, Stewart C, Malekhedayat M, Alber S, Bolch WE, Mahendra M, Berrington de González A, Miglioretti DL. Projected Lifetime Cancer Risks From Current Computed Tomography Imaging. JAMA Intern Med. 2025 Apr 14:e250505. doi: 10.1001/jamainternmed.2025.0505. Epub ahead of print. PMID: 40227719; PMCID: PMC11997853.

Abstract

Importance: Approximately 93 million computed tomography (CT) examinations are performed on 62 million patients annually in the United States, and ionizing radiation from CT is a known carcinogen.

Objective: To project the number of future lifetime cancers in the US population associated with CT imaging in 2023.

Design, setting, and participants: This risk model used a multicenter sample of CT examinations prospectively assembled between January 2018 and December 2020 from the University of California San Francisco International CT Dose Registry. Data analysis was conducted from October 2023 to October 2024.

Main outcomes and measures: Distributions of CT examinations and associated organ-specific radiation doses were estimated by patient age, sex, and CT category and scaled to the US population based on the number of examinations in 2023, quantified by the IMV national survey. Lifetime radiation-induced cancer incidence and 90% uncertainty limits (UL) were estimated by age, sex, and CT category using National Cancer Institute software based on the National Research Council's Biological Effects of Ionizing Radiation VII models and projected to the US population using scaled examination counts.

Results: An estimated 61 510 000 patients underwent 93 000 000 CT examinations in 2023, including 2 570 000 (4.2%) children, 58 940 000 (95.8%) adults, 32 600 000 (53.0%) female patients, and 28 910 000 (47.0%) male patients. Approximately 103 000 (90% UL, 96 400-109 500) radiation-induced cancers were projected to result from these examinations. Estimated radiation-induced cancer risks were higher in children and adolescents, yet higher CT utilization in adults accounted for most (93 000; 90% UL, 86 900-99 600 [91%]) radiation-induced cancers. The most common cancers were lung cancer (22 400 cases; 90% UL, 20 200-25 000 cases), colon cancer (8700 cases; 90% UL, 7800-9700 cases), leukemia (7900 cases; 90% UL, 6700-9500 cases), and bladder cancer (7100 cases, 90% UL, 6000-8500 cases) overall, while in female patients, breast was second most common (5700 cases; 90% UL, 5000-6500 cases). The largest number of cancers was projected to result from abdomen and pelvis CT in adults, reflecting 37 500 of 103 000 cancers (37%) and 30 million of 93 million CT examinations (32%), followed by chest CT (21 500 cancers [21%]; 20 million examinations [21%]). Estimates remained large over a variety of sensitivity analyses, which resulted in a range of 80 000 to 127 000 projected cancers across analyses.

Conclusions and relevance: This study found that at current utilization and radiation dose levels, CT examinations in 2023 were projected to result in approximately 103 000 future cancers over the course of the lifetime of exposed patients. If current practices persist, CT-associated cancer could eventually account for 5% of all new cancer diagnoses annually.

-----------------------------------------------------------------------------------

CT scans, or CAT scans, are widely used to get internal images of the body and diagnose dangerous medical conditions — but they could pose a hidden risk.

A new study from the University of California - San Francisco found that CT (computed tomography) scans could be responsible for 5% of all cancer diagnoses each year, according to a press release.

"While some uncertainty exists, it doesn’t significantly affect the core conclusion: A small but meaningful percentage of cancers are linked to CT scans, and this number can be reduced," first author Rebecca Smith-Bindman, MD, a UCSF radiologist and professor, told Fox News Digital.

The researchers’ estimates show that the ionizing radiation exposure from CT scans is comparable to other significant risk factors, such as alcohol consumption and excess body weight.

To predict how many future cancers could result from current CT scans, the researchers updated a previous analysis of 2023 data on scan volumes, scan types and radiation doses, according to Smith-Bindman.

"We used a well-validated model to estimate cancer risk and conducted sensitivity analyses to confirm the robustness of our findings," she said.

"This is a modeling study, meaning our conclusions depend on the accuracy of the data used."

Based on the review, the researchers estimate that approximately 103,000 future cancers will be caused by CT scans performed in 2023 in the U.S., with the highest number of cases affecting adults aged 50 to 69.

Individual cancer risk is highest for babies and children, with babies under 1 year old 10 times more likely to develop the disease compared to others in the study.

Adults, however, account for the majority of scans, which drives the overall cancer burden, Smith-Bindman noted.

"CT doses are sometimes higher than necessary."

The most common cancer types resulting from CT radiation, according to the study, include lung cancer, colon cancer, leukemia and breast cancer.

The study, which was published on April 14 in JAMA Internal Medicine, received funding from the National Institutes of Health.

"In many cases, CT is the most appropriate test for achieving rapid and accurate diagnoses," Smith-Bindman told Fox News Digital.

"However, the use of CT continues to rise, including a concerning increase in imaging that is performed without a justified medical reason — often referred to as ‘low-value scanning.’"

Based on the findings, the researchers recommend avoiding unnecessary CT scans to avoid potential harms.

Another risk-reducing approach is to lower the radiation dose per scan.

"CT doses are sometimes higher than necessary, so patients are encouraged to ask their healthcare providers or technologists to use the lowest possible dose for their scan," Smith-Bindman advised.

Ultimately, the researcher said, patients should have informed conversations with their healthcare providers about the necessity of a CT scan and whether alternative imaging options — like ultrasound or MRI — might be more appropriate.

"If CT is clearly indicated, the benefits far outweigh the risks," she said. "But if not, it’s best to avoid the scan altogether."

"Less can be more when it comes to good patient care."

Dr. Nicole Saphier, board-certified radiologist and Fox News medical contributor, was not involved in the study but commented on the risks and benefits of CT scans.

"I have long advocated for the judicious use of medical imaging, often citing that less can be more when it comes to good patient care," she told Fox News Digital.

"The recent study linking the ionizing radiation from CT scans to an increased risk of cancer underscores what many in the medical community have understood for years: while imaging is a powerful diagnostic tool, it is not without risk."

Saphier said the study may even underestimate the total number of cancers attributable to medical imaging.

"Many cases of medical intervention-induced cancers may go unrecognized due to long latency periods, the complex interplay of contributing factors and the fact they omitted radiation from image-guided procedures, x-rays and other forms of medical radiation from this study," she noted.

"As imaging use and medical interventions continue to rise — especially in younger populations — the cumulative radiation exposure over a lifetime becomes an increasingly important consideration."

That said, Saphier went on, CT scans and other medical imaging modalities — which are "fast and cheap" — save lives every day.

"The key is balance. Physicians must remain vigilant in weighing the benefits against the risks, and should always explore alternative modalities when appropriate, such as ultrasound or MRI, which do not use ionizing radiation," she said.

Informed decision-making is essential for both clinicians and patients, according to the doctor.

"We must continue to refine our protocols, limit unnecessary imaging and ensure we are using the lowest possible doses without compromising diagnostic quality," Saphier concluded.

"This is not a call to avoid CT scans — it is a call to use them wisely."

https://www.foxnews.com/health/common-medical-test-linked-cancers-study-suggests-use-them-wisely

Fremanezumab for prevention of episodic migraine in children and adolescents

Fremanezumab (Ajovy)—a calcitonin gene-related peptide agonist (CGRP)— is safe and effective for prevention of episodic migraine in children and adolescents as young as 6 years old, according to findings presented at the AAN 2025 Annual Meeting in San Diego.

The multicenter, double-blind, parallel-group, phase 3 study—led by headache medicine specialist and child neurologist Andrew Hersey, MD, PhD, FAAN, endowed chair and director of the division of neurology at Cincinnati Children's Hospital Medical Center—randomized participants aged 6–17 years, with a migraine diagnosis for ≥6 months and history of ≤14 headache days/month, 1:1 to monthly fremanezumab (<45kg, 120 mg; ≥45kg, 225 mg) or placebo for 12 weeks.

“The primary endpoint was a mean change from baseline in average monthly migraine days (MMD), with secondary endpoints including mean change from baseline in monthly headache days of at least moderate severity (MHD) and proportion of participants achieving a ≥50% reduction in MMD," the investigators wrote in their abstract.

Over three months, fremanezumab significantly reduced MMD vs. placebo (-2.5 vs -1.4, p=0.0210). The reduction in MHD was significantly greater with fremanezumab versus placebo (–2.6 vs –1.5; p=0.0172), as was the 50 percent response rate (47.2 percent vs 27percent (p=0.0016).

The trial also included subgroup analyses conducted by age (6–11 and 12–17 years) and sex. In all subgroups, mean changes from baseline in MMD favored fremanezumab over placebo: age (6–11 years: – 3.4 vs –1.7; 12–17 years: –2.7 vs –1.8) and sex (male: –3.5 vs –2.2; female: –2.3 vs –1.5).

The proportion of participants reporting more than one adverse event was similar across treatment groups and the proportion of participants with serious adverse events (less than 3 percent) and adverse events leading to discontinuation were low at less than 1.0 percent.

“These findings demonstrate the efficacy, safety, and tolerability of fremanezumab in children and adolescents with episodic migraine," the investigators concluded.

“This is extremely significant," said Jessica Ailani, MD, clinical professor of neurology at MedStar Georgetown University Hospital and director of the MedStar Georgetown Headache Center in Washington, DC. “This is the first readout of study results for any of the anti-CGRP treatments for migraine prevention in the pediatric population, and as a field we've been holding our breath hoping for an effective treatment. This data is positive, and I'm extremely encouraged."

“While we have real-world evidence showing that these anti-CGRP treatments, especially the monoclonal antibodies, are effective in the pediatric population, that real-world data has been focused more on patients who are refractory to other treatments," Dr. Ailani said. “So it is useful to have trial data in groups of patients who aren't necessarily refractory, and in an age range that includes fairly young patients."

She also praised the trial's breakdown by sex. “There has been some controversy about whether anti-CGRP preventive treatments are equally effective in women and men," she said. “They broke that down, and it looked like maybe it was about a quarter of a day more effective in the male population than the female, but overall, it looked to be very effective in both sexes."

Dr. Ailani noted that in the pediatric population, especially with injectables, there are often a lot of dropouts because of adverse events, so the low dropout rate was impressive. “But I'd like to see if the actual adverse event profile resembled the adult studies, where we didn't really see much other than injection site reactions."

A headache therapy outperforming placebo in the pediatric population is a significant achievement, Dr. Ailani said. “In migraine, we have really struggled to show efficacy compared to placebo, even for acute treatments that we know work really well," she said.

“If we get these patients on track early with migraine-specific treatments, is it possible that they can grow up and not develop chronic migraine?" she asked. “I would love to see long-term data on these types of treatments, and what the headache freedom response rates look like over the course of a year for patients who remain on treatment. Could we see rates of chronic migraine go down over time? That's a really exciting possibility."

Disclosures: Dr. Hershey has nothing to disclose. Dr. Ailani received consulting fees from Abbvie, Eli Lilly, Lundbeck, Satsuma, Pfizer, Gore, Ipsen, Merz, Scilex Dr. Reddy, Linpharma, Vectura, and Aeon. Dr. Ailani serves on a scientific advisory or data safety monitoring board for Abbvie, Linpharma, and Aeon. Dr. Ailani's institution has received research support from Ipsen, Parema, and Lundbeck.

Efficacy and Safety of Fremanezumab for the Preventive Treatment of Episodic Migraine in Children and Adolescents: A Phase 3, Randomized, Double-Blind, Placebo-Controlled Study
Andrew D. Hershey1, Christina L. Szperka2, Piero Barbanti3, Patricia Pozo-Rosich4, Petra Bittigau5, Steve Barash6, Sally Garnett6, Juline Bryson6, Yoel Kessler7, Yael Carmeli Schwartz7, Xiaoping Ning6
1Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA, 2Children’s Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA, 3Headache and Pain Unit, IRCCS San Raffaele, Rome, Italy, and San Raffaele University, Rome, Italy, 4Headache Unit and Research Group, Vall d’Hebron Hospital and Research Institute, Universitat Autonoma de Barcelona, Barcelona, Spain, 5Charité-Universitätsmedizin Berlin, Berlin, Germany, 6Teva Branded Pharmaceutical Products R&D, Inc., West Chester, PA, USA, 7Teva Pharmaceutical Industries Ltd., Tel Aviv, Israel

Objective:

The SPACE study (NCT04458857) evaluated the efficacy, safety, and tolerability of fremanezumab in children and adolescents with episodic migraine (EM).

Background:

Fremanezumab is a calcitonin gene-related peptide pathway monoclonal antibody approved for preventive migraine treatment in adults.

Design/Methods:

In this multicenter, double-blind, parallel-group, Phase 3 study, participants aged 6–17 years, with a migraine diagnosis for ≥6 months and history of ≤14 headache days/month, were randomized (1:1) to monthly fremanezumab (<45kg, 120 mg; ≥45kg, 225 mg) or placebo for 12 weeks. Primary endpoint: least-squares (LS) mean change from baseline in average monthly migraine days (MMD) during the double-blind period. Secondary endpoints included LS mean change from baseline in monthly headache days of at least moderate severity (MHD) and proportion of participants achieving a ≥50% reduction in MMD. Subgroup analyses were conducted by age (6–11 and 12–17 years) and sex.

Results:

Of 237 randomized participants, 234 (6–11 years, n=63; 12–17 years, n=171; male, n=105; female, n=129) were included in the efficacy analysis (fremanezumab, n=123; placebo, n=111). Fremanezumab significantly reduced MMD versus placebo (–2.5 vs –1.4; p=0.0210) over 3 months. LS mean changes from baseline in MMD favored fremanezumab over placebo in subgroups stratified by age (6–11 years: –3.4 vs –1.7; 12–17 years: –2.7 vs –1.8) and sex (male: –3.5 vs –2.2; female: –2.3 vs –1.5). The reduction in MHD was significantly greater with fremanezumab versus placebo (–2.6 vs –1.5; p=0.0172), as was the 50% response rate (47.2% vs 27.0%; p=0.0016). The proportion of participants reporting ≥1 adverse event (AE) was similar across treatment groups (fremanezumab, 55%; placebo, 49%). The proportion of participants with serious AEs (≤3%) and AEs leading to discontinuation (<1%) were low.

Conclusions:

These findings demonstrate the efficacy, safety, and tolerability of fremanezumab in children and adolescents with EM.

Children with peri-optic neuritis treated with intravenous steroids followed by oral steroids

Children with peri-optic neuritis, a rare disorder involving inflammation of the sheath surrounding the optic nerve, had generally favorable outcomes after treatment with intravenous steroids followed by oral steroids, according to a single-center case series presented at the AAN Annual Meeting in San Diego.

“We had both a neuro ophthalmologist and a neuroradiologist who were noticing that more cases of peri-optic neuritis seemed to be occurring at our institution," said the lead author Nicholas Benjamin, MD, a neurology fellow at the University of Pittsburgh.

“We looked into the literature and found very little in pediatric cases specifically," he told Neurology Today At the Meetings. “We decided to search for all the cases [occurring between January 2017 and March 2024] we could identify within our center."

To find potential cases of pediatric peri-optic neuritis, Dr. Benjamin and colleagues searched the ICD-10 codes for diagnoses including perineuritis, optic neuritis (ON), optic papillitis, retrobulbar neuritis, other ON and unspecified ON. For all cases, they reviewed documented interpretations of MRI brain/orbit imaging by radiology. They then reviewed imaging with a neuroradiologist to confirm the diagnosis.

“We began by looking at all patients with peri-neuritis on imaging and then went backwards to look at treatment they received," Dr. Benjamin said. “Many of these cases also demonstrated optic neuritis as well on imaging concurrently, so they were dual treated for these, as the primary teams were more often treating the optic neuritis picture, as they are more familiar with this etiology. As a result, a number of our reviewed cases did not mention peri-neuritis on imaging reads, but upon our look, clearly had peri-neuritis present."

Dr. Benjamin and colleagues ultimately identified 20 cases, nine of whom were females, with a median age at diagnosis of nine years.

Seventy five percent of the patients presented with changes in vision, headaches (45 percent), or painful eye movements (40 percent).

The most common diagnoses after review of imaging were idiopathic ON (in 35 percent), myelin oligodendrocyte glycoprotein (MOG)+ ON (in 35 percent), and inflammatory P-ON without ON (in 10 percent).

None of the patients was diagnosed with either multiple sclerosis of NMO. “I found that a little surprising and unexpected," Dr. Benjamin said. Seventeen of the 20 patients were tested for myelin oligodendrocyte glycoprotein antibody disease (MOGAD), seven of whom (41 percent) were positive.

Initial treatment for 18 of the patients was intravenous steroids, followed by oral steroids.

“Adults with isolated peri-optic neuritis can sometimes get away with receiving only oral steroids," Dr. Benjamin said. “Our findings suggest that kids seem to do well when they receive IV steroids followed by an oral course." However, many cases in this study had concurrent ON and perineuritis present at the same time, and received treatment for both of these conditions.

Only two of the patients required therapeutic escalation to plasmapheresis or the immunosuppressant drug rituximab.

Four patients experienced documented relapses. At follow-up, ranging from three to 10 months, all 16 patients with available data had stable or improved visual acuity.

“This is just a case series, “but it shows that IV steroids followed by oral steroids may be a good regimen for the pediatric population," Dr. Benjamin said.

Stronger evidence for the best treatment options would require a randomized trial, but doing so would be unlikely for a single institution due to the condition's rarity, Dr. Benjamin said.

“It could be done, but it would likely take multiple institutions collaborating," he said.

A neuroimmunologist familiar with the study said she was glad to see its focus on pediatric cases but hopes that larger studies will eventually be available.

“It's a small case series from a single site," said Jennifer Olson Graves, MD, PhD, professor of neurosciences and division chief of neuroimmunology at the University of California, San Diego, as well as director of the Rady Children's Pediatric MS Center in San Diego.

“Consistent with the adult literature, there were no MS cases with perineuritis," she said. “I teach people that if you see peri-optic neuritis, it's never MS."

She was surprised that only seven of the 17 cases tested for MOGAD were positive, and that only one-third of the cases were positive for MOG.

“We need to think of this as a frequency series in a tertiary care hospital, not a population-based study," Dr. Graves said. “It may be referral bias that most of their cases weren't MOG. I would be curious to know whether the ones who had to escalate were MOG positive or not. I would expect the MOG cases to be responsive to steroids."

Dr. Graves said that in her experience, “kids with MOGAD have about a 50 percent chance of relapse. For the idiopathic cases, it's hard to predict. It's possible that it would be a one-time event and never recur."​

Disclosures: Dr. Benjamin had no disclosures.​

https://journals.lww.com/neurotodayonline/blog/NeurologyTodayConferenceReportersAANAnnualMeeting/pages/post.aspx?PostID=213

Children with Peri-Optic Neuritis Have Favorable Visual Outcomes After Steroid Treatment: A Singe-Center Pediatric Case Series
Nicholas Benjamin1, Srikala Narayanan2, Catalina Cleves1, Levi Shelton1
1Children's Hospital of Pittsburgh of UPMC, 2Texas Children’s Hospital

Objective:

To determine baseline characteristics and outcomes in pediatric patients presenting with peri-optic neuritis (P-ON).

Background:

P-ON is a rare inflammatory disorder leading to inflammation of the nerve sheath. Most literature addresses adults, with little information on the pediatric population.

Design/Methods:

We conducted a single-center retrospective study of patients presenting to UPMC Children’s Hospital from 01/2017 – 03/2024. We used ICD-10 codes (optic neuritis (ON), optic papillitis, retrobulbar neuritis, other ON, unspecified ON) to identify potential patients with P-ON. For identified patients, we reviewed documented interpretations of MRI brain/orbit imaging by radiology. For patients with interpretations suspicious for P-ON, we reviewed their imaging with a neuroradiologist to confirm the diagnosis. For those patients, we collected baseline characteristics and outcomes.

Results:

We identified 20 cases of P-ON. The median age at diagnosis was 9 years, and 9 patients (45%) were female. Most patients presented with vision changes (75%), headaches (45%), and painful eye movements (40%). Initial ophthalmologic findings included disc edema (55%) and disc pallor (30%). The most common diagnoses (all with confirmed P-ON on imaging) were idiopathic ON (35%), MOG+ ON (35%), and inflammatory P-ON without ON (10%). No patients were diagnosed with MS or NMO. Of the 17 patients tested for MOGAD, 7 (41%) were positive. Eighteen (90%) patients initially received intravenous (IV) steroids, followed by oral steroids. Two (10%) patients had escalation of therapies to plasmapheresis or Rituximab. Four (20%) patients had documented relapses. Steroid therapy produced stable or improved visual acuity at follow-up (ranging from 3-10 months) in all patients (100%) with data present (n=16).

Conclusions:

MOG+ status was common among patients with P-ON, along with ON cases. Regarding visual outcomes, all patients either had stable or improved visual acuity at follow-up, showing that the regimen of IV to oral steroids may be a good treatment option in the pediatric population.

Alobar holoprosencephaly redux

 Anonymous donor paid $47K for baby's medical bills, family says

A Florida baby who was given just weeks to live is thriving today — and it wouldn’t have been possible without the generosity of an anonymous donor who covered her medical bills.

When Bill and Meg Longhenry welcomed their second child, Millie, in August 2023, they were told she had no hope of survival due to a rare and severe congenital brain disorder called alobar holoprosencephaly (HPE).

HPE affects about one in 10,000 live births, and most infants do not survive beyond the first week, statistics show. Millie was born with the most severe form of the disease.

"We found out that she has a rare brain malformation where part of her brain didn't develop, and the other part didn't develop correctly," Meg Longhenry said in an on-camera interview with Fox News Digital. 

"So there's no division between the two hemispheres and the middle is hollow."

Doctors told the parents that "Millie should have been a miscarriage or a stillbirth," her mother said. "She should have died moments after birth."

"They told us over 95% of patients with this diagnosis don't survive past the first few months … and anyone who survives past that requires an enormous deal of medical care, like feeding tubes and breathing tubes," said Bill Longhenry. "Usually they have no brain function."

After spending two months in the hospital, Millie was sent home on hospice care with four to six months to live — but the Longhenrys weren’t ready to give up.

"God had something else in mind," said Bill Longhenry. "God had a different plan, and only God was able to really make that decision."

"Millie should have been a miscarriage or a stillbirth," doctors told the baby’s parents.

A friend recommended that Millie’s parents connect with Dr. Brandon Crawford, a functional neurologist at the NeuroSolution Center of Austin, who specializes in using non-invasive techniques without drugs or surgery.

Upon reviewing MRIs and examining Millie, Crawford said he saw "huge potential."

While much of her brain is missing, he said, the higher portion is "relatively intact and functioning well," he told Fox News Digital.

"I started to get the idea that this kiddo is really trying — she's not on the decline, she's actually really fighting to live her life in this world."

Defying the odds

Under Crawford’s care, Millie began a treatment plan that included laser light therapies, acoustic wave therapy that uses sound waves to stimulate natural healing processes, and primitive reflex integration, which "retrains" the brain-body connection and helps babies learn to better control their movements.

Dr. Marcella Madera, a neurosurgeon who serves as NeuroSolution’s medical director, also collaborates on Millie’s treatment to ensure safety and efficacy.

"It’s this combination of regenerative medicine, developmental functional neurology, and photobiomodulation that’s sparking and fueling her brain development and building neuroplasticity," Crawford told Fox News Digital in a separate interview. 

"For example, she can clearly see and she responds to visual cues — yet she doesn't have the majority of those visual pathways developed in her brain," he went on. "That means her brain has rewired and remapped the ability to see, and that's the amazing part, that the brain is able to do that."

Bill Longhenry describes the treatment as "combining physical therapy with neural functions."

Today, Crawford said, Millie is not only surviving, but thriving — something that is very rare for this condition.

"She continues to grow and develop and is getting stronger," he said. "We're working on crawling with her right now — that's unheard of for this. Her joint attention continues to improve, even her ability to eat."

Millie is also starting to vocalize, Crawford said, saying "Mom" and "Dad" and communicating with her big brother, Theo.

"She's got a spunky little personality, and it's amazing," he said. "Honestly, if you look at her and interact with her in person and then look at her MRI, you wouldn't think it's the same kid."

Millie is smiling, laughing and responding to her name. She also understands people’s speech and is using sign language. 

"Millie would not be here today if we weren't doing the different things to help her brain, to help her rewire," added Meg Longhenry.

Answered prayers

Last month, Millie’s family faced the possibility of canceling her intensive neurological therapy due to financial constraints.

Meg Longhenry had recently let Crawford know they would have to cancel their next treatment due to lack of funds — but he told her to come in anyway.

"I said, don't worry about it, just come. There's no way I'm dropping care with Millie — we've come too far."

On the morning of March 27, as Crawford’s team was about to perform another regenerative medicine procedure with Millie, they prayed for divine intervention, he told Fox News Digital.

"A couple of hours later, we got the random phone call," he said. "It was another patient who has been following Millie's story, and she said, ‘I feel like I'm supposed to donate something for Millie’s case, and my front desk said, well, that would be amazing."

The donor offered to cover the total outstanding balance for Millie’s treatment — more than $47,000.

"It's just impossible to understand that level of generosity from a stranger," said Bill Longhenry. 

"We have to pursue this treatment, but it's not covered by insurance, so we're just doing whatever we can to make it work."

Ultimately, the Longhenrys did find out who covered the medical expenses — a previous patient of Dr Crawford’s. They were able to call her and thank her for the donation.

While this anonymous gift clears a major financial hurdle, Millie’s journey is far from over, the family shared. 

She will require follow-up therapy every four to six months, specialized home equipment and travel for continued care, which insurance does not cover.

"I think the finances are always really scary for us … but there's not a price that I could put on her life," Meg Longhery said. "I'll continue to fight and do what I need to do so she can have the best life that she can."

"There's not a price that I could put on her life."

The family also relies heavily on their faith, believing that Jesus worked through Dr. Crawford to help save Millie’s life, according to her mother.

"We serve such a big God that he is greater than our biggest fears — he is the greatest physician, and he aligns us with where we need to be and who we need to be," she said.

"And it's so encouraging to see the growth that we were told repeatedly we wouldn't see."

For more information about Millie’s journey and progress, people can visit MovingMountainsForMillie.org or @movingmountainsformillie on Instagram.

https://www.foxnews.com/health/baby-fatal-brain-disorder-saved-anonymous-47k-donation

Pelletier/Gottesfeld updates

Justina Pelletier is Focusing on Her Personal Growth Today

Once Justina returned home, she underwent a few more surgical procedures to help cope with her symptoms. Her parents also consulted doctors regarding potential spine-related problems which have hampered her walking. In 2020, Justina testified in court for a lawsuit her parents had filed against the BCH for medical malpractice. She alleged that the hospital staff disallowed her to speak to her parents and were sometimes cruel to her. Justina further insisted that her pleas to return home were ignored. She said, “They didn’t believe [my pain], and they hurt me so much,” Pelletier said. “I kept getting weaker.”

Since her discharge, Justina has engaged in art therapy and horseriding and graduated high school in 2020. She now still leads a private life in her parents’ home in Connecticut, where she feels happy and safe in their constant care. Now 23, Justina continues receiving treatment for her mitochondrial syndrome. Sadly, in 2021, she experienced a stroke, drastically impacting her health, verbal communication, and energy levels.

https://thecinemaholic.com/where-is-survivor-justina-pelletier-now/

Lou and Linda Pelletier Are Focusing on Justina’s Health Now

Though the Pelletiers gained significant support from religious groups, parent groups, and media outlets, Justina was shifted to Wayside Youth and Family Support Network, a residential facility in Framingham, Massachusetts. Seeing no other way to get back their daughter, Linda and Lou mildly complied with the BCH’s treatment plan for her, and in June 2014, the court finally dismissed the child protection case against them. Thus, Justina was finally reunited with them and taken back to Connecticut.

Linda and Lou were relieved to bring Justina home, but their troubles were far from over. The teenager was unable to walk and was still having multiple health complications. Deeply hurt over the trauma they and Justina had faced for around 16 months, Linda and Lou filed a malpractice lawsuit against Boston Children’s Hospital for sending her to the psychiatric ward. The couple’s testimony divulged how their daughter secretly passed them notes during their hospital visits, complaining of the staff’s misbehavior and her desperate wish to go home.

Not just that, Justina herself testified the same in court in 2020, but ultimately, the jury found BCH not negligent in her care. Despite losing the lawsuit, Lou refused to give up his fight for his daughter and helped pass the bill for Justina’s Law. It prohibits the use of federal funds to conduct or support treatment or research involving a ward of the state in which the individual’s health is subjected to greater than minimal risk with no or minimal prospect of direct benefit.

Lou and Linda still live in their Connecticut home and are dedicated to caring for Justina round-the-clock, as she is back on her medications for mitochondrial disease. The Pelletiers faced another setback in 2021 when she had a stroke, affecting her daily functions. Nevertheless, her parents took every measure to nurse her back to health and now hope she can walk again someday. Linda shared how traumatized she still feels about everything and how hard it is for her and Lou to put what happened behind them. We sincerely hope the family gets the strength to heal from their pain and have a peaceful future ahead.

https://thecinemaholic.com/lou-and-linda-pelletier-where-are-justinas-parents-now/

Marty Gottesfeld is Now Making the Most of His Time As a Free Man

Marty was sentenced to ten years in prison and was subsequently incarcerated in a few different federal prisons across the nation. According to his wife, there was even a time a high-security facility kept him in solitary confinement for 22 hours daily, and he was allowed only two fifteen-minute calls weekly. Dana divulged in the documentary that Marty’s communication were heavily monitored. Yet, he continues to support social causes and voices his opinions on government policies by corresponding with media organizations through her.

As per the documentary, the hacktivist’s projected release date was April 11, 2024, and he already had a job offer from a progressive publishing house to work as a web developer. However, he was released early, around November 2023, and has since happily reunited with his loving wife Dana. “Words fail me, because you’re out in public again,” he once said upon being asked what it was like to be free. “Like, they just put you on a greyhound bus; when I was released, it’s like, they just drop you off at the bus station, and you’re out in public again, and you can talk to people.” We should mention he did walk away with 210 lbs of legal documents he’d created while incarcerated, and he is determined to continue down the path he once created to help Justina and others like the once-teen. The Somerville, Massachusetts, resident is now a full-fledged human rights activist as well as a writer for many platforms; plus he has a blog of his own.

https://thecinemaholic.com/marty-gottesfeld-where-is-hacker-and-social-activist-today/

Schizophrenia is associated with an aberrant immune response to Epstein–Barr virus

Faith Dickerson, Lorraine Jones-Brando, Glen Ford, Giulio Genovese, Cassie Stallings, Andrea Origoni, Colm O’Dushlaine, Emily Katsafanas, Kevin Sweeney, Sunil Khushalani, Robert Yolken, Schizophrenia is Associated With an Aberrant Immune Response to Epstein–Barr Virus, Schizophrenia Bulletin, Volume 45, Issue 5, September 2019, Pages 1112–1119, https://doi.org/10.1093/schbul/sby16

Abstract

Background

Epstein–Barr virus (EBV) is a highly prevalent human herpesvirus capable of infecting the central nervous system and establishing persistent infection.

Methods

We employed solid phase immunoassay techniques to measure immunoglobulin G (IgG) class antibodies to EBV virions and defined proteins in 432 individuals with schizophrenia and 311 individuals without a history of a psychiatric disorder. Western blot testing was performed to document reactivity to specific EBV proteins. Polygenic risk for schizophrenia was calculated from genome sequencing arrays. Levels of antibodies between the groups were compared by multivariate analyses incorporating clinical, genetic, and demographic measures.

Results

Individuals with schizophrenia had marked elevations in the levels of antibodies to EBV virions as compared to the control population. Further analyses indicated increased levels of reactivity to EBV-viral capsid antibody (VCA) but not to EBV nuclear antigen-1 (EBNA-1) or to other human herpesviruses. Western blot analysis confirmed increased reactivity to VCA proteins in the group of individuals with schizophrenia and documented a lack of increased levels of antibodies to EBNA-1. Genetic analyses indicated an additive effect of increased levels of antibodies to EBV virions and genetic susceptibility to schizophrenia, with individuals with elevated levels of both type of markers having a greater than 8.5-fold odds of a schizophrenia diagnosis.

Conclusions

Individuals with schizophrenia have increased levels of antibodies to some but not all EBV proteins indicating an aberrant response to EBV infection. This aberrant response may contribute to the immunopathology of schizophrenia and related disorders.
_____________________________________________________


New research from Johns Hopkins Medicine and Sheppard Pratt Health System shows that people in the study with schizophrenia also have higher levels of antibodies against the Epstein-Barr virus (EBV), a herpes virus that causes infectious mononucleosis, so-called mono.

Researchers proposed two explanations for the association of heightened immune responses in patients with schizophrenia and EBV infection: schizophrenia might alter the immune systems of these patients and make them more susceptible to EBV, or EBV infection might increase the risk of schizophrenia.

The article was published online Nov. 20 in Schizophrenia Bulletin.

“We are interested in the role of infectious agents such as Epstein-Barr virus in schizophrenia and other serious psychiatric disorders, so we did this study to look at the associations,” said Robert Yolken, M.D., the Theodore and Vada Stanley Distinguished Professor of Neurovirology in pediatrics at Johns Hopkins Children’s Center and senior author of the study. Yolken cautioned that the study wasn’t designed to determine cause and effect.

Schizophrenia is a mental disorder where patients have distorted thinking, perception, emotions, language, sense of self and behavior. According to the World Health Organization, schizophrenia affects more than 21 million people worldwide.

While schizophrenia has some genetic associations, genes that have been found to date explain only a portion of the disease risk. Environmental exposures, including to some infectious agents, have also been identified in previous studies as increasing the risk for schizophrenia.

EBV is a common virus and research suggests it infect approximately 90-95 percent of the world’s population. However, most people never show symptoms of infection and the vast majority of people never have complications. EBV initially causes fever and swollen lymph nodes, and is commonly transmitted through oral contact such as kissing. In severe cases, it can spread to the central nervous system and cause persistent infection. Researchers wanted to see the relationship between this EBV infection and schizophrenia.

The researchers conducted a study among 743 people—432 with a schizophrenia diagnosis and 311 without a history of a psychiatric disorder to serve as a control group. Around 55 percent of the participants were men.

The researchers first measured levels of antibodies against components of EBV by comparing antibody levels in healthy people with those of people who have schizophrenia. They looked at the odds of having these antibodies in the 50th, 75th and 90th percentiles and found that people with schizophrenia were 1.7 to 2.3 times more likely to have increased levels of some EBV antibodies compared with people without schizophrenia.

Then they measured the antibodies to other related viruses such as varicella/chicken pox or herpes simplex type 1/cold sore virus, and didn’t find an increase of antibodies against these viruses in people with schizophrenia. These findings suggest that only EBV was associated with increased risk of schizophrenia.

After that, the researchers sequenced a portion of the participants’ DNA to determine their genetic risk for schizophrenia. Results from the analysis showed that people who had both evidence of increased genetic risk for schizophrenia and increased antibody levels to EBV had a more than eight times higher chance of being in the schizophrenia group as compared with controls. Approximately 10 percent of the individuals with schizophrenia had increased levels of both antibodies and genetic risk as compared with slightly more than 1 percent of the controls.

“We found that individuals with schizophrenia had an unusual response to Epstein-Barr virus,” said Yolken. “This indicated that the prevention and treatment of Epstein-Barr virus might represent an approach for the prevention and treatment of serious psychiatric disorders such as schizophrenia.”

Currently, there are no treatments available for EBV approved by the Food and Drug Administration, but a number of compounds that may prevent or treat replication of the virus are under investigation. The researchers considered the development of these approaches a high priority so that people with schizophrenia or other disorders associated with susceptibility to EBV could use them. In the meantime, researchers recommend preventing EBV transmission through good hygienic practices such as hand-washing and avoiding oral contact, such as kissing, with infected people.

https://www.hopkinsmedicine.org/news/newsroom/news-releases/2019/01/schizophrenia-linked-with-abnormal-immune-response-to-epstein-barr-virus