A long chain with Kolbe’s wedding ring — an ornate silver band — hangs close to Vocci’s heart, beside a locket engraved with Kolbe’s photo and fingerprint. Tattooed on Vocci’s forearm is a rainbow and a quote Kolbe liked: “There is a rainbow of hope at the end of every storm.”

“We called each other soul sisters,” said Vocci, her eyes glossy with tears.

In December, one day after Kolbe turned 35 and four months after she gave birth to her first child, she took her own life at her Long Island, New York, home. When Vocci got the call, she dropped to the floor and screamed so loud and for so long that her neighbors called police.

Before Kolbe died, she had been struggling with postpartum depression, a mood disorder characterized by persistent feelings of sadness, worthlessness, guilt and shame. The condition can cause new mothers to experience terrifying and unwanted thoughts about accidentally or intentionally harming themselves or their baby.

Postpartum depression is distinct from the “baby blues” — a mild and temporary form of depression experienced by most new moms that typically goes away within two weeks after they give birth. The mood disorder is more serious, and, while it’s less common, studies estimate that up to 15% of people who have a baby will experience it. Black women and those with a history of depression or bipolar disorder are especially at risk.

According to national and local experts, screening and treatment for postpartum depression remains lacking across the country. Until recently, there was no standardized strategy for collecting data on maternal deaths from suicide. Now, research suggests that nearly 1 in 5 maternal deaths in the country are due to suicide, making such deaths more common than those caused by postpartum hemorrhage or hypertensive disorders.

Lately, Vocci, of Towson, and her mother — Lisa Kolbe, who lives in Gaithersburg — have been pouring their grief into advocacy. Earlier this month, they both testified in support of a bill in the General Assembly that would connect at-risk pregnant women and new moms to their local health departments. Both the House and Senate have passed versions of the bill.

Lisa Kolbe doesn’t mince words when asked how she is doing. She is broken. But Andrea — pronounced ahn-DREY-ah — would want her to be happy, so she is trying to move forward. And she doesn’t want to keep how her youngest daughter died private.

“I’m open about it with everyone,” she said. “It can’t be hush-hush anymore. It can’t. We’ve got to protect women. We’ve got to get them proper care.”

Infrequent screenings

Under guidelines from the American College of Obstetricians and Gynecologists released last year, providers should screen women for depression and anxiety multiple times during their pregnancy and after they give birth. However, according to data from public and private insurance companies, that usually doesn’t happen.

For Medicaid patients in 2022, screening rates were 16% during pregnancy and 17% postpartum, according to data compiled by the nonprofit National Committee for Quality Assurance. The rates were even lower for people covered by private insurance — 9% during pregnancy and 11% postpartum.

At Mercy Medical Center and Greater Baltimore Medical Center — the hospitals that deliver the most babies in Baltimore and Baltimore County, respectively — doctors said they regularly screen pregnant women and women after birth for mental health concerns.

Across the country, however, the maternity care infrastructure is threadbare, said Joy Burkhard, executive director for the Policy Center for Maternal Mental Health. More than a third of counties are maternity care deserts, meaning they have no hospitals or birth centers offering obstetric care and no obstetric providers, according to a 2022 report from the March of Dimes.

Providers who deliver babies also don’t learn enough about maternal mental health in medical school, which makes it hard for them to identify and manage the conditions and teach their patients about them, Burkhard said.

“It’s a bit like the Wild West in terms of what kind of care someone might or might not get,” she said.

Last year, the policy center released report cards measuring each state’s success at screening for and treating maternal mental health conditions. Maryland received a C-minus — above the national D grade.

According to the report card, the state is doing some things well. Last year, the Maryland Department of Health announced that people eligible for Medicaid would be able to access benefits for their entire pregnancy and the 12-month postpartum period, regardless of their immigration status or any changes in income or household size.

However, the report card also noted that Maryland doesn’t require providers to screen for maternal mental health disorders or require Medicaid to reimburse for that. A report released in 2016 by a task force created by the General Assembly said the state should start requiring screening. But that recommendation — like most others in the report — has yet to be fulfilled.

Barriers to treatment

Even when a woman is screened for depression, she may not be forthcoming if she’s worried her baby will be taken from her, or her doctor will think she’s a bad mom. Despite being so common and treatable, maternal mental health issues remain draped in societal misunderstandings.

“It’s a terrible stigma,” Vocci said. “Like, if you don’t feel blessed and joyful to have a baby, then something’s wrong with you.”

Then, there’s what happens after screening: Research shows that less than a quarter of women who test positive for depression receive mental health treatment. Black women are even less likely to be screened and receive treatment than white women — even though they’re more likely to experience perinatal mood disorders, said Dr. Lindsay Standeven, clinical and education director of the Johns Hopkins Reproductive Mental Health Center.

There’s also a dire shortage of mental health workers, which has only gotten worse since the beginning of the coronavirus pandemic. Some providers are reluctant to screen women for postpartum depression because they know how hard it is to find help.

Many of the mothers who deliver at Mercy are from city neighborhoods where they grew up not getting enough to eat or being traumatized by other effects of poverty, Atlas said. That chronic stress can cause all kinds of complications in pregnancy, including preeclampsia, delivering babies preterm, and mood disorders like depression and anxiety.

Finding a therapist or psychiatrist also can be especially difficult for this population, since few mental health workers accept Medicaid — the plan that covers about 60% of Mercy’s patients, Atlas said.

But help doesn’t have to come from a therapist, Standeven said. She advocates for collaborative care models, where different kinds of providers work together to treat patients. An OB-GYN office, for example, may employ a social worker to help women navigate the mental health system.

“That kind of opens up the funnel that’s clogged right now for patients with more severe psychiatric illness to be seen in-person by experts in the area,” she said. “Right now, we don’t have offense or defense. We just are flooded.”

Making noise

Vocci’s home is usually filled with the clamor of three young boys, two cats and two dogs. But earlier this month, it was quiet as she stood in her kitchen in front of a shrine to her little sister.

Each day, Vocci lights a tall, milky white candle that sits before a framed photo of Kolbe. On the table, a vase is filled with seashells that look like tiny ballet slippers. Kolbe, a dance instructor, used to call them “slipper shells,” Vocci said. After her sister died, she collected them at New York’s Crescent Beach — one of Kolbe’s favorite places.

More than three months after Kolbe took her own life, Vocci and her mother are starting to accept that grieving the loss of her will be a lifelong journey. Sometimes, when Vocci is driving, her stomach will drop as she realizes again that her little sister is gone. Then, the tears come.

Vocci has always been keyed into local politics. Kolbe wasn’t so much — she’d tell her big sister to calm down when she was on a soapbox. With Kolbe no longer around to tease her, Vocci’s interest in policy has morphed into a powerful source of purpose.

Vocci hopes to start a Maryland chapter of Postpartum Support International, a nonprofit that aims to increase awareness about the emotional changes that women experience during pregnancy and after birth. And she’s starting a charitable organization named after her sister — Andrea’s Wish Foundation.

The foundation is in its infancy, but Vocci hopes that one day it will raise enough money to help train health care providers to better treat maternal mental health conditions and help women afford therapy and find support groups.

Kolbe left a large hole in the Long Island dance community, Vocci said. She worked at a dance center there and taught and mentored hundreds of little girls over the years. But Vocci wants to ensure that her sister’s legacy will shine far beyond New York.

“I am here to make some noise,” she said.

If you are a loved one are experiencing distressing or suicidal thoughts, help is out there. Call or text 988, the country’s free suicide and crisis hotline. Pregnant and new moms can also dial or text 833-852-6262, the maternal health hotline run by the federal government.

The research, published earlier this month in Frontiers in Pediatrics, analyzed the post-hospital quality of life for children previously diagnosed with COVID-19 or multisystem inflammatory syndrome in children — a rare condition associated with COVID where body parts like the heart, lungs, kidneys, brain, skin and eyes become inflamed.

Researchers found that 30% of the families participating in the study reported that their child had not fully recovered from COVID or the syndrome also known by its initials as MIS-C.

Of the children who hadn’t recovered following their hospital discharge, the majority — 87% — had neurological symptoms, the Kennedy Krieger Institute in Baltimore said in a news release this week. About three in five children continued to struggle with headaches and just under half experienced weakness.

These numbers “speak volumes” about the lasting effects that COVID has on some children, said Dr. Beth Slomine, co-director at Kennedy Krieger’s Brain Injury Clinical Research Center and one of the study’s co-authors.

“Our findings highlight the urgent need for better monitoring systems and care strategies to address the long-term effects that the pandemic made on pediatric health,” said Slomine, who is also Kennedy Krieger’s assistant vice president of psychology.

The study included 79 children from 12 medical centers across the country and lasted from January 2020 to July 2021 during the coronavirus pandemic. It is part of a global research effort to better understand how often people hospitalized with COVID experience neurological problems once they are released.

Other important findings from the study included that of the children who had not recovered from COVID, 40% had at least one return emergency visit and 24% were readmitted to the hospital. These children also had increased signs of inflammation when they were admitted to the hospital, compared to those whose parents reported them being recovered.

“More research is needed to better understand the relationship between pandemic-related social stress and prolonged symptoms,” Slomine said in the news release.

Also in the news release, Dr. Ericka Fink — lead author of the study and a critical care pediatrician at the UPMC Children’s Hospital of Pittsburgh – said the next step for researchers is to dig deeper into understanding factors that could help predict which patients are at risk for persistent symptoms.

In the future, she said, scientists may be able to develop a screening tool to help doctors identify those children more likely to require longitudinal, multidisciplinary care.

Most children diagnosed with COVID and long COVID — a collection of ongoing, returning or new symptoms experienced after an initial COVID infection — don’t require hospitalization, according to Kennedy Krieger’s news release. However, Slomine emphasized the importance of equipping families with information about the risks associated with the illness so they can make the best decisions for their children.

“As we continue to learn about COVID-19, education and awareness remains at the forefront at Kennedy Krieger and around the world,” Dr. Slomine said. “Collaborative endeavors such as these are pivotal in guiding our research and ensuring the best care possible for children affected by the virus.”

Jessie Buckley sighed, shifting a curtain of dark red hair from her face. Inside a small, windowless room on the University of Maryland’s campus in College Park, she glanced across the table at Katie Aveni, a speech-language pathology master’s student, who nodded encouragingly.

Again, Buckley sighed.

“I’m really sick of you doing that,” she said, injecting frustration into every word.

For the last six months, Buckley, a 26-year-old trans woman who lives in Annapolis, has been developing a new voice with the university’s Hearing and Speech Clinic. The voice is much higher than the voice she had after going through male puberty. It’s slower and smoother, and is sweet and warm, even when she’s feeling shy. It’s brighter now.

She’s still learning how to adjust it when she’s sad or angry — the skill she was working on last fall when she practiced saying she was “sick” of someone doing something. But for the first time in her life, she’s starting to feel like her voice reflects who she is.

While not every trans or nonbinary person needs gender-affirming voice therapy, experts say it’s necessary health care for some people experiencing gender dysphoria. That’s the condition defined by the American Psychiatric Association as a feeling of disconnect between a person’s gender identity and the gender they were assigned at birth.

It’s less physically invasive than other procedures, like chest masculinization or facial feminization surgery. But it can take months of consistent, sometimes emotionally painful practice for changes in a person’s voice to become a habit. Meanwhile, the patient has to go to work or school, make calls, and order from restaurants with one of the most visible signs of their gender in flux.

“You can choose how to dress on a given day, you can choose how you act on any given day. The voice is much harder to choose to be different,” Buckley said. “It’s a lot of effort to change a part of yourself that’s very impactful to how people perceive and interact with you.”

How to change a voice

Ask a voice expert to explain how humans produce sound and, sooner or later, they’ll bring up a musical instrument. Dr. Lee Akst, director of the Johns Hopkins Voice Center, chooses a guitar.

Your vocal cords are two muscular bands that sit in your larynx, above your windpipe. When you inhale, they open in a V shape, allowing air to pass between them and down to your lungs. When you speak, they close and vibrate together in the air flow created as you exhale.

And just like when you pluck a guitar string, Akst said, that vibration is the foundation for sound production.

Also like a guitar string, the thicker and larger a person’s vocal cords are, the deeper their baseline pitch is. That’s why people who go through male puberty typically have deeper voices than those who experience female puberty.

As a surgeon, Akst can adjust that baseline pitch for a trans woman by tightening or reducing the mass of the vibrating portion of her vocal cords. For trans men, he can relax their vocal cords, since thicker cords produce a lower-pitched sound. Those procedures are less common, since many trans men find that taking testosterone sufficiently lowers their voice.

While surgery can change the pitch, there are other elements that influence how someone speaks. There’s intonation: how their voice rises and falls; and resonance: the sound quality of their voice, which is influenced by how they shape their mouth and throat and position their tongue.

Voice therapy teaches people to manipulate these aspects, Akst said. Many trans and nonbinary people who see speech pathologists achieve their goals without surgery. A good candidate for further intervention is someone who has advanced in voice therapy to the point that they’re happy with their voice and are able to use it without strain, Akst said, but find they fall out of their new voice if they’re not always thinking about it.

Under Maryland’s Trans Health Equity Act, which went into effect Jan. 1, Medicaid covers gender-affirming voice therapy and surgery, among other services.

Ashley Davis, a Johns Hopkins speech pathologist who specializes in gender-affirming voice therapy, hopes the new law makes voice therapy more accessible to Maryland’s estimated 94,000 trans and nonbinary people. However, most commercial insurers, including Cigna — which Buckley has — don’t cover voice therapy. Buckley paid $1,400 for the therapy she received at the University of Maryland over the course of the fall.

To reduce barriers to care, Davis kept her telemedicine practice going after the pandemic so people don’t have to leave home for appointments.

“When someone achieves what they’re seeking, it’s such a rewarding moment,” she said. “I can’t imagine what that is like — other than having the feedback of people coming back to me and saying, ‘I never knew I had so much to say.’”

Coming out

Two years after the fact, Buckley’s fiancee, Brittney Keys, laughs when she remembers how Buckley realized she was trans. She’d dressed as Little Red Riding Hood for Halloween as a joke, but when she put the dress and heels on, it didn’t feel goofy. It felt right.

Looking back, Buckley said she lived in an almost constant state of dissociation before realizing she was trans. She’d look in a mirror and struggle to comprehend that she was the person staring back.

“It was probably just way too overwhelming of how bad I would feel, if I let myself feel bad,” Buckley said. “And so, I just wouldn’t let myself feel anything to stop that from happening.”

She found a therapist about three months after that Halloween and a few months later, she began taking estrogen. Within a week, she noticed something: For the first time in her life, she’d feel randomly happy, even if nothing special had happened.

But as she moved along in her transition, her voice started bothering her more. She tried to follow online videos posted by voice therapists, but wasn’t sure if she was doing the exercises correctly. She wasn’t much of a singer, so she didn’t have experience manipulating her voice.

In January 2023, she applied to receive gender-affirming voice therapy at the University of Maryland. She started sessions with Aveni over the summer.

Every trans and nonbinary person has different goals, but Buckley has always wanted a stranger’s first impression of her to be that she is a woman, rather than a trans woman. She’d like to choose whether to come out to someone.

She said she always knows when someone notices she’s trans. No matter what they do — whether they look at her with disgust and pull a child away from her, or if they smile as they walk by — to her, the first look is the same. And it hurts every time.

“Here I am, trying my best to present femininely,” Buckley said, “and clearly, it’s not working the way I wanted.”

Behind the glass

With 15 minutes left in one of Buckley’s voice therapy sessions, the conversation turned to phone calls — and Buckley’s distaste for them.

As an engineer for a Baltimore company, she doesn’t make many calls for work. It’s also rare for her to call a friend just to chat. But one of her goals is to be consistently gendered correctly on the phone, so she knows she has to practice.

“Can we prank call someone right now?” Aveni joked.

A few doors down from the practice room, Kristin Slawson watched a stream of Buckley’s session. Slawson, a certified speech language pathologist and director of clinical education in speech language pathology at the University of Maryland, supervises graduate students during their clinical hours.

The number of people interested in receiving gender-affirming care from the clinic has increased since Slawson started at the hearing and speech sciences department 12 years ago. Now, they almost always have a waiting list.

When a new patient starts, Slawson and at least one graduate clinician meet with them. They measure the person’s baseline vocal abilities and explain how adaptable voices can be. They also ask lots of questions, from what a person’s goals are to what their social support system looks like.

Although Slawson doesn’t require it, she prefers clients to have a therapist. While she and her students are trained to provide some counseling related to voice and communication, feelings related to those subjects often bleed into tricky areas, like family dynamics, relationship issues and body dysphoria.

“Voice is very core to who we are,” Slawson said. “I don’t think everybody appreciates that until you’ve cracked the can of worms.”

Nobody walks out of the speech clinic with a fully evolved voice. Instead, Slawson’s students help clients find the words to describe how they’d like their voice to sound, then give them the tools to make changes.

For many trans and nonbinary people, Slawson said, the hardest part isn’t figuring out how to adjust their resonance or raise their pitch without unnecessary tension. It’s learning to like a part of themselves that has distressed them in the past.

“Just because your voice changes doesn’t mean your thinking changes,” she said. “And that’s the hard part. It’s reconnecting with your voice. Bringing it back into the fold.”

Jessie in color

Thanksgiving was a turning point for Buckley.

When she came for her therapy session the next week, she couldn’t wait to play Aveni the recordings she’d made of her voice over the holiday. Before then, Aveni recalled, getting Buckley to say anything positive about her voice was like pulling teeth. The change seemingly happened overnight.

Buckley agreed. Before, she could tell her control over her resonance and pitch was improving. But it wasn’t until all of the elements of her voice clicked together that she was happy with how she sounded.

“I was very much holding myself to a quite high standard,” she said, of her earlier dissatisfaction. “And if I’m not reaching the standards that I’ve set, why would I be happy with it?”

During the next few months, Buckley plans to check in occasionally with Aveni, but they will no longer meet every week. She has the tools — the evolution of her voice is now in her hands.

Lately, Keys has noticed a distinct change in her partner’s confidence. When she compliments Buckley’s makeup or tells her she looks cute, Buckley scrunches up her face and replies, “I know.”

She’s more quickly frustrated than before she realized she was trans — back when she felt detached from life — but she’s more quick to laugh, too.

Buckley’s wardrobe formerly consisted mostly of gray and black T-shirts. Now, it’s full of color.

“She’s just,” Keys stopped and stared at Buckley, who stared back, eyes full of tears, “brighter now.”

“Another doctor and I were like, ‘No. That’s really sexist,’” said Gupta, who graduated in 2009 from the Johns Hopkins University with degrees in creative writing and psychology, and now lives in Boston.

Looking back, Gupta wonders what would have happened if she hadn’t dismissed the doctor’s idea. Maybe it wouldn’t have taken her so long to be diagnosed with premenstrual dysphoric disorder, or PMDD. It is a menstruation-related mood disorder that, before Gupta received treatment, caused her to have monthly depressive episodes where she hurt herself, thought about suicide and sometimes attempted it, and had vicious, explosive fights with her partner.

But Gupta has empathy for her younger self. Patients wait an average of 12 years to receive an accurate PMDD diagnosis, according to unpublished survey data from the International Association for Premenstrual Disorders, an advocacy and peer support organization. The disorder wasn’t added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders — the handbook that guides mental health diagnosing practices in the United States — until 2013.

When Gupta was diagnosed, her instinct was to avoid talking about it, despite her relief at finally understanding her monthly spirals. But stigma around the disorder and delays in diagnosis are why she instead ran in the opposite direction. She wrote a book about it.

“I could not believe that it had taken me until the age of 30 to get a diagnosis,” Gupta said. “I lost a relationship. I knew, probably, if I didn’t get help, I would probably end up losing another relationship, or at least severely damaging it.”

“I was just like, ‘I don’t know how many other people are going through the same thing.’”

Gupta’s book, “The Cycle,” will be published Tuesday by Flatiron Books, a division of Macmillan Publishers. It contains descriptions of self-harm, suicidal ideation and intimate partner abuse.

It tells the controversy-laden story of how PMDD became a legitimate diagnosis and includes testimonies from people living with the disorder and researchers studying it. In a searing description of what it is like to live with an undiagnosed mental health condition, Gupta also shares her experience with PMDD and her long road to diagnosis and treatment.

“The Cycle” is Gupta’s second book, and the first she wrote by herself. As someone who started dreaming about writing a book when she was a child growing up in Minnesota, Gupta said Hopkins’ creative writing program — one of the oldest in the country — gave her permission to take that goal seriously.

“I still remember the first day of class freshman year,” she said. “Our TA [teaching assistant] sat us down and he was like, ‘You may have been good writers in high school, but your competition now is T.S. Eliot.’”

While there are other books on the market about PMDD, “The Cycle” will be among the first from a major publishing company. It features interviews with Maryland experts, including Liisa Hantsoo at Johns Hopkins University School of Medicine and Dr. Peter Schmidt at the National Institute of Mental Health in Bethesda.

The psychiatric association’s manual lists criteria for the symptoms a woman must experience — including depression, anxiety and increased mood swings — to be diagnosed with the disorder. The handbook also requires those symptoms to be so severe that they cause a woman distress or interfere with her work, education or relationships. Doctors typically have women keep track of their symptoms for two menstrual cycles before they consider a PMDD diagnosis.

Researchers estimate that PMDD affects between 3% and 8% of those who menstruate and are of reproductive age. Even more people experience another menstrual mood disorder called premenstrual exacerbation, or PME, where menstruation worsens their existing mental health disorders, such as anxiety, depression or an eating disorder.

While a menstrual cycle can range from 21 to about 35 days and still be considered healthy, the average cycle is 28 days. It can be divided into two phases: the follicular phase, which begins when a woman starts bleeding to shed an unfertilized egg, and the luteal phase, which starts when her ovaries release an egg.

For both menstrual mood disorders, symptoms surface during the luteal phase, when the hormones estrogen and progesterone increase in the body to thicken the lining of the uterus, then decline if there’s no fertilized egg present. Women with PMDD see their symptoms disappear when their cycle returns to the follicular phase.

Researchers have found that women with PMDD typically have normal levels of hormones, but have abnormal mood reactions to those hormone changes that occur during the luteal phase of their menstrual cycle. Schmidt and other scientists are trying to understand why that happens.

While awareness of the disorder has improved, Schmidt said he still hears from patients who struggle to get a diagnosis or whose symptoms are dismissed by their doctors. In general, he said, the country has a long way to go in removing the stigma around mental health issues.

“Depression is probably one of the leading causes of morbidity and mortality in the world, but you don’t see a lot of press about depression as you would, say, cancer or heart disease or diabetes,” said Schmidt, who leads the National Institute of Mental Health’s behavioral endocrinology section and is one of the most prominent researchers in the PMDD field. “We all feel a little more comfortable when there’s a blood test or something physical, as opposed to involving the mind.”

Stigma, however, is just part of the story of why it took so long for PMDD to be included in the psychiatric association’s manual.

Since the 1980s, people have questioned the legitimacy of the diagnosis and wondered whether it is another example of the male-dominated medical field pathologizing women’s bodies. The mood swings some women experience while menstruating have long served as the butt of jokes and justification for why women shouldn’t hold political office or other powerful positions.

“The moment anyone’s going to say, ‘Periods are linked to mental health,’” Gupta said, “the knee-jerk reaction is, ‘No. This is the establishment making something up to hold women back.’ It’s completely understandable — except there’s a proportion of us who really do suffer and find treatment evidently beneficial.”

Hantsoo, an assistant professor of psychiatry and behavioral sciences at Johns Hopkins School of Medicine, said that if more doctors and medical professionals learned about PMDD and other women’s health conditions in medical school, it likely would be much easier for patients with the disorder to get diagnosed and treated.

Women with PMDD are sometimes misdiagnosed with other mood disorders like bipolar disorder or depression. This prevents them from getting the care they need, since the treatments for mental health conditions are different, Hantsoo said. Getting a diagnosis is also important for women to understand how PMDD has affected their lives.

“Finally having a name to put on it and saying, ‘OK, this is what this is,’” she said, “can be really helpful for people just in terms of their own processing of what they’re experiencing around these symptoms.”

For Gupta, it’s hard to overstate the power her diagnosis had on her life. Today, she wears a ring that measures her basal body temperature and tells her when she is ovulating. She takes fluoxetine — an antidepressant marketed as Prozac — from the first day she ovulates until her follicular phase begins.

She’s married to a man she adores. They have occasional arguments, but their partnership isn’t marked by the rage-filled battles of Gupta’s previous relationship. Overall, she feels like she now has more space in her brain. It’s easier to be present and laugh at little annoyances.

While she didn’t start writing “The Cycle” to process her experience with an undiagnosed mood disorder, that’s what it became.

“In some ways, writing the book for me was about narrating the story of the change, the shift in identity for myself,” she said, “of going from ‘bad person’ to ‘person who needs help.’”

She carries two in her laptop bag and another two in her purse. She’s taught all of her friends how to use one in case she’s experiencing a reaction so severe that she can’t do it herself.

Despite her caution, Pleasants — who has alpha-gal syndrome, an allergy to mammal meat caused by a bite from the lone star tick — estimates that since she was diagnosed in 2010, she’s experienced anaphylaxis about a dozen times. That’s a serious, potentially life-threatening, allergic reaction that can involve swelling in the throat, lips and tongue, shortness of breath, chest tightness and other symptoms.

So when Pleasants heard that the U.S. Food and Drug Administration had approved a medication to help people with food allergies avoid severe reactions, she was thrilled.

“It would change my life drastically,” said Pleasants, 52, who lives on Kent Island and works for an allergist in Bel Air. She added with a laugh, “All of my friends would actually want to go out to eat with me again.”

The FDA approved the medication omalizumab — co-developed by Novartis Pharmaceuticals and Genetech, and sold under the brand name Xolair — for use by some people with food allergies earlier this month.

While Xolair is the first FDA-approved medication for food allergies, it is not a cure. Someone with a peanut or wheat allergy, for instance, can’t start eating peanut butter and jelly sandwiches for lunch, even if they’ve been prescribed the drug. Instead, Xolair is meant to reduce the risk of allergic reactions that people may experience after accidental exposure to a food they’re allergic to.

It’s administered through regular injections every two to four weeks, with a frequency depending on a patient’s reaction to allergens and their weight. That’s a commitment, Pleasants acknowledged, but she’s still excited to try the drug.

“You also have to keep in mind that if you go to a restaurant and my chicken was cooked with your steak, then I’m not immediately going to die,” she said. “It’s going to give me a little extra layer of protection.”

The FDA approved Xolair to treat asthma in 2003, and later approved the drug to treat chronic hives and nasal polyps. Researchers have long suspected that it also might benefit people with food allergies, but the federal agency didn’t give doctors the green light to prescribe it until the recent completion of a study led by the Johns Hopkins Children’s Center.

In that study, scientists found that Xolair substantially reduced potentially life-threatening reactions in patients with peanut allergy and other common food allergies. After about 16 weeks, nearly 67% of the study participants treated with Xolair were able to tolerate 600 mg of peanut protein — an amount equal to about 2.5 peanuts — compared with 6.8% of participants who received the placebo.

Most participants treated with Xolair were able to tolerate even more peanut protein than 600 mg, the initial endpoint of the study. A majority could tolerate 4,000 mg of the protein, equivalent to about 15 peanuts, and nearly half were able to eat 6,044 mg of the protein, equal to about 25 peanuts.

Researchers in the study also found that Xolair significantly increased the amount of other allergens participants could tolerate, including tree nuts, milk, eggs and wheat. However, there was variability among participants; 14% of people treated with the drug could not even tolerate 30 mg of peanut protein.

Dr. Robert Wood, director of the division of allergy, immunology and rheumatology at the Hopkins Children’s Center and the study’s principal investigator, presented the data Sunday at the annual meeting of the American Academy of Allergy, Asthma and Immunology in Washington, D.C. The study’s findings also were published Sunday in The New England Journal of Medicine.

Wood, who identified the study as one of the most important done on food allergies during his 40-year career, said his team will continue to study the drug’s potential. That includes how it compares with Palforzia, an oral immunotherapy product approved to help mitigate allergic reactions in patients between 4 and 17 years old who are allergic to peanuts.

“We don’t expect the FDA is ever going to approve a label saying, ‘You can start eating the food,’” Wood said, “but there will be practice guidelines and things that are developed to talk about how the drug might be used differently in one patient to another.”

Stanford-led study offers relief to children with dangerous food allergies, leading to FDA drug approval

Between 6% and 8% of children and 2% and 4% of adults have a food allergy in the U.S. — percentages that have grown in the past few decades for reasons researchers don’t entirely understand.

People with food allergies produce a type of allergen-specific antibody called immunoglobulin E. When they eat, touch or inhale the food they’re allergic to, the allergen binds to those IgE antibodies attached to their immune cells, which in turn signals those cells to release huge amounts of chemicals, including one called histamine. This is what causes allergic reactions.

Xolair acts as an anti-IgE drug, which means it binds to the antibody and stops it from binding to immune cells. While it has some limitations — the effects wear off if patients don’t get regular injections, for instance — allergist Dr. Manav Singla predicts it will be greatly beneficial to the quality of life for people with allergies.

Palforzia, the other product that helps reduce the likelihood of an allergic reaction, comes with risks not attached to Xolair, said Singla, who practices at Allergy Asthma Specialists of Maryland, which has locations in Baltimore, Bel Air, Owings Mills and White Marsh.

“You can be doing this for six months, eight months, a year with no problem tolerating your daily dose. And then one day, you can actually have a reaction to your daily dose,” Singla said. “Another risk is that you have to be very compliant. If you miss a day or two, it can set you back really bad.”

Comparatively, Singla said, only a small percentage of people have a risk of experiencing an allergic reaction to Xolair.

However, it’s expensive — out-of-pocket, one vial of the drug costs about $1,200, and some people will require multiple doses per month. Insurance companies are currently drawing up coverage plans for the medication, which Singla estimates will be available in about three to six months.

Dr. Yemi Adebayo, associate chair of the emergency department at the University of Maryland Baltimore Washington Medical Center, said Xolair has the potential to be a “game changer” in the field of food allergies. If the drug is accessible and affordable, he expects it to help decrease the number of patients who come to the emergency department with allergic reactions.

He knows firsthand just how expensive it is to have a child with a food allergy. Two of his three daughters are allergic to eggs, and one of them was recently diagnosed with a tree nut allergy, too. With insurance, her junior EpiPen cost the family $140, Adebayo said. The cost of an adult EpiPen would be $240.

“Those are big numbers when it comes to families, especially in a day and age where people are clenching their wallets and trying to make cuts where they can,” he said. “We surely don’t want to put people in a position where they have to make a decision between helping their child or themselves and putting food on the table.”

In the study, which involved nearly 1,000 patients seen at the Baltimore Convention Center Field Hospital during a five-month period in 2022, researchers found that self-administered COVID tests rivaled those administered by clinicians in their ability to determine accurate positive and negative results.

Self-administered tests were 83.9% accurate in determining positive results — compared to 88.2% for clinician-administered tests — and 99.8% accurate in determining negative results, compared to 99.6%.

“We believe this is an important finding because it suggests physicians can feel confident prescribing treatment based on patient-reported, self-administered tests with positive results,” study senior author Dr. Zishan Siddiqui said in a Johns Hopkins news release on Tuesday. Siddiqui is an assistant professor of medicine at the Johns Hopkins University School of Medicine.

The study was posted online Tuesday in the American Society for Microbiology journal Microbiology Spectrum.

While polymerase chase reaction, or PCR, COVID tests are more accurate that rapid antigen tests, they must be administered by a skilled laboratory technician, require special equipment and take up to an hour or more to process.

Testing on a massive scale can only be done at a large, centralized testing facility, whereas rapid tests can be administered at home by anyone and provide results in about 15 minutes.

For the study, Johns Hopkins researchers worked with researchers at the University of Maryland School of Medicine and five other organizations. Together, they enrolled 953 participants between Feb. 12 and July 15, 2022, at the State Center complex in Midtown Baltimore.

The temporary testing site closed last year after opening in April 2020 to treat COVID patients during the pandemic and help relieve an expected surge that could overwhelm area hospitals. It also offered free COVID tests and, eventually, vaccinations.

Researchers conducted both a rapid and PCR test on study participants, and had them give themselves a rapid test and report their own results. The participant pool was 60.6% female, 58.6% white and 98.2% English-speaking, and their median age was 34, according to the Hopkins news release.

In an earlier Hopkins-led study at the Baltimore Convention Center Field Hospital, researchers demonstrated that rapid COVID tests had comparable accuracy to PCR tests.

“The first study suggested that a health care system can provide an equitable response to COVID-19, with [rapid antigen tests] making it possible to test all socioeconomic levels of a large population quickly and repeatedly,” Siddiqui said in the release.

“The new study bolsters that belief by showing comparable accuracy between self- and physician-performed [rapid antigen tests] and, therefore, helping build clinician confidence in patient-reported results from at-home tests.”

The rapid antigen test used in the study was the BinaxNOW COVID test manufactured by Abbott and supplied at no cost by the Maryland Department of Health.

Future studies “should look at an array of brands across a broader demographic spectrum so that our results can hopefully be confirmed and amplified,” said Mary Jane Vaeth, the study’s lead author, in the Hopkins news release. Vaeth was a clinical assistant at the now-closed field hospital.

In a study published last month in the peer-reviewed scientific journal Molecular Psychiatry, researchers focused on the potential of particles called extracellular vesicles to provide a window into what’s happening inside a person’s brain.

Extracellular vesicles are fatty sacs of genetic material that are released by every tissue in the body, including the brain.

Sarven Sabunciyan, an assistant professor of pediatrics at the Johns Hopkins School of Medicine and the paper’s senior author, compared them to rafts that travel between cells. They sometimes carry messenger RNA — a type of molecule also called mRNA that contains the instructions for how cells should make proteins.

“It’s basically a way of cells communicating,” he said.

The study, led by the Johns Hopkins Children’s Center, was inspired by a previous study by Johns Hopkins researchers, Johns Hopkins Medicine said in a news release Thursday. That study found that communication between cells is altered in pregnant women who go on to develop postpartum depression after they give birth.

In the new study, scientists first proved that mRNA from specific tissues are found in extracellular vesicles circulating in the blood. Then, using lab-grown human brain tissue derived from stem cells, scientists found that mRNA in extracellular vesicles released from brain tissues reflected mRNA changes happening inside those tissues.

According to the researchers, that means it is possible to gather biological information from hard-to-access tissues — like the placenta or the brain — by examining mRNA inside of extracellular vesicles circulating in the blood.

The study’s results suggest that mRNA in extracellular vesicles are likely an ideal biological marker for identifying brain disorders that involve mood, schizophrenia, epilepsy and substance abuse.

“This is very exciting, because right now, there isn’t a blood marker for disorders affecting the brain,” said Lena Smirnova, a co-author of the paper, said in the Hopkins news release about the study. Smirnova is an assistant professor in the Department of Environmental Health and Engineering at the Johns Hopkins Bloomberg School of Public Health.

Also in the latest study, researchers discovered 13 brain-specific mRNAs in the blood that were found to be associated with postpartum depression.

Using the lab-grown brain tissue, the researchers discovered that while cellular and extracellular mRNA levels are not identical, they do correlate, which means it is possible to figure out what’s happening inside the brain by looking at extracellular vesicles in the blood.

The team’s eventual goal, Sabunciyan said, is to create a simple blood test that could detect changes in levels of mRNA in extracellular vesicles linked to changes in the brain associated with mental disorders.

“One of the biggest obstacles — not just in psychiatric disorders, but in brain disorders — is, we don’t really know what’s happening in the brain,” Sarbunciyan said. “We can’t just do a blood test or take an X-ray.”

Moving forward, Sarbunciyan and his colleagues plan to conduct further research, including with people who have psychiatric conditions like bipolar disorder to identify how markers in their blood change as they fluctuate between periods of mania, depression and stability.

Besides forming the foundation of a new way to test for mental health conditions, scientists hope their research will lead to the “next generation” of prenatal tests, where doctors will be able to simply draw blood from the mother to screen her baby for a health issue, rather than conduct an invasive procedure like amniocentesis.

Other authors on the paper included Sergio Modafferi and Charlotte Schlett from Johns Hopkins; Lauren Osborne from Weill Cornell Medicine; and Jennifer Payne from the University of Virginia.

Between Dec. 1 and Jan. 23, the CDC has been notified of 23 measles cases, including seven “direct importations” by international travelers and two outbreaks with more than five cases each, according to a letter the federal agency sent to clinicians last week.

Most of the cases were among children and teenagers who had not been vaccinated against the virus, and nine of them were reported by the health department in Philadelphia — a city that is a two-hour drive from Baltimore. Additionally, the Virginia Department of Health notified people earlier this month that they may have been exposed to measles if they were at Dulles International Airport on Jan. 3 or at Ronald Reagan Washington National Airport on Jan. 4.

The outbreak may be scary, said Dr. Theresa Nguyen — chair of pediatrics at the Greater Baltimore Medical Center in Towson — but it’s important for parents not to panic.

Instead, she said, “the message is, ‘Get your children vaccinated.’”

The measles vaccine used today, MMR — which also protects people against mumps and rubella — was approved by the Food and Drug Administration more than 50 years ago. But the nationwide MMR vaccination rate has fallen by two percentage points over the past two school years, after sitting firmly at 95% for 10 years. In Maryland, the child vaccine exemption rate increased by 0.4 percentage points from the 2021-22 school year to the 2022-23 school year.

Measles, a very contagious viral illness characterized by a high fever, rash, cough, runny nose and pinkeye, hasn’t been endemic in the U.S. in more than 20 years. But in 1998, the progress made in convincing parents to vaccinate their children was jeopardized by the publication of a flimsy study that suggested getting the MMR vaccine may predispose a child to developing autism.

The journal that published the study has since retracted it, and Andrew Wakefield — the paper’s lead author — is now barred from practicing as a physician in the United Kingdom. But the vaccine hesitancy seeded by his research persists today, Nguyen said. And since the coronavirus pandemic, vaccine hesitancy has only grown, she added.

Nguyen recently sent a letter of her own to GBMC’s pediatricians, asking them to be aware of the increase in cases and to add measles to the list of viruses that may explain a child’s fever or cough.

It also needs to be easy for families to vaccinate their children, said Dr. Esther Liu, chair of the department of pediatrics at the University of Maryland Baltimore Washington Medical Center in Glen Burnie.

The hospital’s community outreach program is working with a local elementary school to help parents ensure that their children are caught up on their vaccines before an outbreak begins, Liu said.

The CDC recommends that all children get two doses of MMR vaccine. Children should receive the first dose when they’re 12 to 15 months old and the second dose when they’re 4 to 6 years old.

However, Liu said, it’s important for parents to know that their child can be vaccinated when they’re as early as 6 months old if they are planning to travel to a country where measles is common, their child has been exposed to the virus, or there is an outbreak nearby.

For parents who are nervous about vaccines, Liu recommended that they check out healthychildren.org — a parenting website run by the American Academy of Pediatrics. The website has easy-to-understand and well-researched articles about a number of topics, including the risks and benefits of vaccines.

Despite the recent measles outbreaks, the virus is much less common than it once was. Between 1989 and 1991, outbreaks — many of them clustered in areas where immunization rates were low — sickened more than 55,000 Americans and killed 123.

For comparison, between 2022 and 2023, 179 cases were reported to the CDC. Nguyen may have seen people with measles when she was a young child living in Vietnam, she said, but she certainly hasn’t seen any patients with the virus since she became a physician.

But the success of vaccines — considered to be one of the greatest public health advancements in history — can have some ironic consequences, Liu said.

“As parents, we want to protect our kids. That’s a very natural response,” she said. “Because we don’t see the devastation of these actual illnesses because we have better control in this country, I think it’s easier to fear the vaccine more than the illnesses.”

“I really tell parents,” she continued, “‘Make sure you understand what it is that we’re trying to protect your child from.’”

As a child with an overactive imagination who struggled to stay organized and to wait her turn, Edwards had a hard time learning as her classmates did. And her principal didn’t waste any opportunity to remind her — and everyone else – that she was “an unteachable dunce,” said Edwards, who now lives in Baltimore.

“Ninety percent of the scars on my body came from school — getting spanked because teachers deemed me so stupid,” she said. “Not because I was actually stupid, but because they didn’t have the training to teach me effectively.”

It wasn’t until Edwards was studying for her bachelor’s degree in her early 30s that she finally got an explanation for why she had to work so much harder than her classmates: She had attention-deficit/hyperactivity disorder, or ADHD.

The number of adults being diagnosed with ADHD — a neurodevelopmental psychiatric disorder characterized by inattention, hyperactivity and impulsivity — is increasing rapidly in the U.S. According to a 2019 study published in the Journal of the American Medical Association, such adult diagnoses are growing roughly four times faster than they are among children.

However, there are no U.S. guidelines for diagnosing and evaluating the disorder in adults, said Dr. David Goodman, an assistant professor in psychiatry and behavioral sciences at the Johns Hopkins School of Medicine. Instead, such guidelines only exist for treating the condition in children and adolescents.

Goodman and other ADHD doctors are optimistic that will change in coming years. The American Professional Society for ADHD and Related Disorders Association — better known as APSARD — recently launched a special committee, stacked with experts and clinicians from around the world, to write the first U.S. treatment and diagnostic guidelines for adults with ADHD.

The committee has a long road ahead before the American Psychiatric Association and National Academy of Medicine consider endorsing any guidelines it proposes, said Goodman, who is treasurer of APSARD.

It took the organization four months just to vet everyone on the committee for conflicts of interest, Goodman said. Next, committee members will complete an extensive analysis of existing adult ADHD research before they eventually draft a manuscript of selected assessments and treatments. Then they will present that draft for public comment, and incorporate any feedback into the guidelines before submitting them for peer review and publication.

“So has your head exploded now that you’ve realized this process?” Goodman said during a talk at the annual Children and Adults with ADHD conference in Baltimore in November.

Despite the complicated path forward, Goodman hopes the guidelines will be a sea change for diagnosing and treating adults with ADHD.

He believes they will encourage educational institutions to incorporate more information about adult ADHD into their curricula, to better equip clinicians and doctors to recognize and manage the condition. He also hopes the guidelines will influence insurance company decisions about whether to cover the treatment and evaluation of adults for the disorder, and make it easier for patients to access medications.

And, Goodman said, having clinical practice guidelines for adult ADHD will ensure a more uniform diagnostic and treatment approach across the country — the importance of which the pandemic made clear.

While some studies suggest that ADHD remains underdiagnosed and undertreated among adults, the prescription of stimulants — a kind of drug used to treat the disorder — increased by 45.5% in the country between 2012 to 2021, according to data from the U.S. Food and Drug Administration and the Drug Enforcement Administration. Prescriptions for stimulants jumped by more than 10% in some age groups between 2020 and 2021, according to data from the U.S. Centers for Disease Control and Prevention.

The boom of the telemedicine industry during the pandemic greatly improved access to mental health care. But Goodman worries it also led to some adults being inaccurately diagnosed with ADHD and mistakenly being prescribed stimulants like Adderall — a medication that has been in short supply for more than a year.

If a person without ADHD is prescribed a stimulant, they’ll likely tell their doctor that their mood, cognition and energy levels have all improved, said Dr. Max Wiznitzer, who serves on the board of directors for Children and Adults with ADHD, or CHADD.

“In other words, if you drink your cup of coffee, you begin to focus better for a short time,” he said.

“But for this population, they’re not at a normal level,” he said of those with ADHD. “They’re under-performing regarding attention. And what the intervention does is it brings them closer to the mean level that everyone else in the world is at, and that makes them more functional as a consequence.”

CHADD is working together with APSARD to ensure that its guidelines can be adapted to the needs of different medical and mental health specialists and patient populations, such as those with co-occurring diagnoses and conditions, Wiznitzer said during the November conference.

The consequences for adults who don’t have their ADHD diagnosed or treated can be dire, said Dr. Jill RachBeisel, psychiatry chief for the University of Maryland Medical Center and psychiatry chair for the University of Maryland School of Medicine.

They’re more likely to develop substance use disorders, experience unemployment, drop out of college and struggle with self-esteem, RachBeisel said. And, she added, they’re likely to have a hard time managing friendships and relationships, which can lead to loneliness and isolation.

She recalled how a teenager reacted when she started taking medication for her ADHD for the first time.

“She said to her mother, ‘This is the first time I have been able to have a thought and think about one topic without having 10 other topics bombard my thinking,’” she said. “I think that’s a nice visual of what it’s like to live with an ADHD brain.”

Kristine Streett, a 34-year-old living in White Marsh, nearly died before her ADHD was finally diagnosed. About six years ago, while she was going through a divorce and struggling with alcohol abuse, she tried to take her own life. It was an impulsive, out-of-character decision, and when she woke up in the hospital, Streett said, she knew she’d made a big mistake. In the weeks that followed, she was correctly diagnosed with ADHD, post-traumatic stress disorder and major depression — after being misdiagnosed as a teenager with schizophrenia.

The last few years have been hard. Streett’s mother died in 2019 and she was diagnosed with melanoma shortly after that. But she’s found a medication that works for her and created a system for remembering to take it. She does yoga and meditates every day. And she makes an ever-growing pile of to-do lists to keep herself on track, all while maintaining a sense of normalcy for her two small children, whom she co-parents with her ex-husband.

Streett still sees her ADHD diagnosis as a curse in some ways, but she’s starting to recognize how it also can be a blessing. She’s a champion multitasker, who wears an impossible number of hats — from a singer in a band to hairdresser to Etsy small business owner to volunteer with National Alliance on Mental Illness Metro Baltimore’s HelpLine.

And after nearly two decades of enrolling, then dropping out of college, Streett is about a semester away from graduating with a degree in criminal justice and police science from the Community College of Baltimore County in Essex. It’s the best she has ever done in school, she said.

“Nobody’s perfect and it’s really difficult — it is still a challenge every day — but it’s something that you have to work towards to make it work for you,” she said.

Edwards also has found ways that her ADHD diagnosis can benefit her career. She works in the human resources department of a real estate company in Baltimore, where she advocates for the inclusion of neurodivergent people in the workplace.

As for her elementary school principal? She has him to thank for the title of her dissertation, which she defended in November to earn a doctorate in human rights education, with a focus on disability justice and inclusion: “The Re-education of the Unteachable Dunce Student.”

She remembers sitting in an examination room as a middle schooler, watching her mother cry as a nurse practitioner asked her if she wanted her daughter to die. At that point, while Slick’s weight was considered obese by the body mass index, she already had been dieting for about four years and practiced karate every week.

“It used to be that if I had a doctor’s appointment in the day, I wouldn’t eat or drink anything until I had gone to the doctor — whether or not that appointment was at 10 a.m. or if that appointment was at 3 p.m.,” she said. “I just wanted to be as small as I could going into the doctor’s office.”

When Slick, a 31-year-old Baltimore resident, heard about the American Academy of Pediatrics’ new guidelines for treating childhood and adolescent obesity, she shuddered.

The guidelines, released in January by the country’s leading pediatricians group, advise primary care doctors to offer families a variety of treatments early for childhood obesity. “Watchful waiting” to see if children with obesity developed into average weight adults — the group’s previous recommendation — would no longer cut it.

The guidelines became an immediate subject of controversy, triggering backlash from nutritionists, eating disorder clinicians and people like Slick, who know what it’s like to live in a larger body.

They worry a focus on weight loss will trigger or worsen disordered eating in children with larger bodies, exacerbate weight stigma in doctor’s offices and lead physicians to overlook the diets and exercise routines of children whose weights are — according to the body mass index — average or low.

Especially controversial was a guideline that doctors consider prescribing weight loss drugs to children as young as 12 and referring 13-year-olds to be evaluated for weight loss surgery.

The guidelines use the body mass index, or BMI, a measure calculated from a patient’s weight and height. While controversial, BMI remains widely used by physicians to determine whether a patients’ weight is healthy.

Supporters of the guidelines say surgical treatment options wouldn’t be offered in isolation. The recommendations also emphasize the need for ongoing lifestyle and behavioral treatments, such as proper nutrition and physical activity.

“This is nothing that pediatricians can or should force on families,” said Dr. Sarah Hampl, a lead author of the guidelines and a pediatrician in Kansas City, Missouri.

Research dating back decades has documented weight stigma among medical professionals. Primary care physicians may be less likely to show empathy, concern and understanding to patients whose bodies the doctors consider overweight or obese, while such patients have reported being mis-diagnosed and may even avoid going to a doctor.

The American Academy of Pediatrics’ guidelines explicitly recognize the role weight stigma historically has played in medical care.

At Kennedy Krieger Institute’s Weight Management Program, patients work with their doctors to create unique treatment plans, said Dr. Anton Dietzen, a pediatric physiatrist with the institute’s Fit and Healthy Clinic.

“Every one of these cases is so different,” Dietzen said. “There are so many complex biopsychosocial issues going on — a lot of multigenerational households, and parents working two jobs, and issues of food insecurity, and patients who are eating two of their three meals a day at school.”

But no matter the circumstance, Dietzen said, it’s important to offer early and intensive treatment for childhood obesity.

The condition is a chronic disease, and its effects pile up over time, he said. The longer a child’s weight is elevated, the more likely it is they’ll develop serious diseases like cardiovascular health problems and Type 2 diabetes, he said.

Colleen Schreyer, an assistant professor at the Johns Hopkins School of Medicine who serves as the director of clinical research for the Johns Hopkins Eating Disorders program, has complicated feelings about the guidelines.

“I see the need for treatment of obesity,” Schreyer said. “I also think we need to be thoughtful about how we implement those treatment interventions to prevent the onset of disordered eating.”

Some researchers say people whose weights are considered obese by the BMI can still be healthy. But Schreyer said patients with a BMI above 30 are more likely to have conditions such as high blood pressure, elevated cholesterol levels, chronic pain and limited mobility.

Schreyer said bariatric surgery can alleviate some of those conditions. She said before adolescents undergo surgery at Johns Hopkins, they receive six months of a behavioral weight loss intervention and meet for six months with a psychologist to identify and treat mental health concerns such as eating disorders, depression and anxiety. Hopkins offers the surgery to adolescents as young as 16.

The guidelines recommend that doctors consider referring children to be evaluated for the surgery if their weight is 120% above the 95th percentile, according to the BMI. Schreyer said her typical adolescent patient weighs well above the 99th percentile for BMI — some around 400 pounds — and typically have other medical issues like high blood pressure and limited mobility.

Deborah Kauffmann is a nutrition counselor who practices a non-dieting approach to weight management and is the former director of nutrition services at The Center for Eating Disorders in Towson. She said the BMI is an inaccurate measure of health.

“Many people are born with a high number of fat cells and that doesn’t determine health,” Kauffmann said. “Even if the BMI did account for body composition, it would still be pretty meaningless and not be an indicator for your health in any way.”

Dietzen said BMI is a useful tool when it comes to screening patients for potential weight management intervention, but doesn’t capture the complete picture.

“Just like anything in medicine, you have to look at the individual and not the numbers,” he said.

Kauffmann strongly objected to the guidelines’ suggestion of considering weight loss surgery consultation for teenagers as young as 13. She said bariatric surgery comes with short and long-term complications, which she’s seen in patients she’s worked with after surgery who have digestive and nutritional issues.

Schreyer defended weight loss surgery as a long-term solution. One option involves removing up to 80% of a patient’s stomach, allowing them to feel full after eating significantly less food.

“We know that 95% of people who start a behavioral weight loss intervention will regain the majority of their weight,” Schreyer said. “Around 60-65% of patients who undergo bariatric surgery keep their weight off five to 10 years later.”

A bigger issue with the guidelines, Kauffman said, is that they treat obesity alone as an elevated health risk. Instead, Kauffman said, physicians need to pay attention to sudden, drastic weight loss or gain, which could be indicative of issues such as eating disorders or insulin resistance.

“To assume that a child isn’t healthy because of a higher weight is just wrong,” Kauffmann said. “There’s no way around it — scientifically and morally, it’s wrong.”

Jane Zeltser, the practice manager for the Eating Recovery Center’s east region, said weight loss surgery is like “butchering” children “just so they can fit a mold of looking a certain way.”

Still, Zeltser, 38, said that when she was a teenager struggling with an eating disorder, she would have jumped at the suggestion.

“I would have done anything and everything to make myself smaller,” Zeltser said.

At 4 years old, Zeltser immigrated with her family from what is now Kyiv, Ukraine. She said that while she couldn’t control her secondhand clothing or her accent, she could reject her hometown foods that set her apart from other students.

By the time she got to high school, that restriction morphed with a desire to occupy a smaller body, leading Zeltser to take weight loss pills. She experienced worrying symptoms: an elevated heart rate, insomnia, headaches and even hallucinations.

But because Zeltser never fell into the “underweight” category, help was hard to come by, especially from Zeltser’s pediatrician.

“He would say, ‘Well, you’re in the 75th percentile. So actually maybe you could stand to lose some weight,’” Zeltser said. “I was hospitalized because of the effects of these diet pills on my body.”

According to the National Association of Anorexia Nervosa and Associated Disorders, fewer than 6% of people with eating disorders are medically diagnosed as underweight.

Hampl said the American Academy of Pediatrics is working with eating disorder organizations to develop better tools to help doctors check their patients for the warnings signs of disordered eating, regardless of their weight.

Research shows that kids who try to lose weight through fad diets are more likely to have an eating disorder, Hampl said. But kids who have a caring medical provider trying to help them “achieve a healthier weight” through a structured program are less likely to develop such disorders, she added.

“There’s really no benefit in trying to pit the eating disorders community against the weight management community. That’s really counterproductive,” Hampl said. “Both of these issues are highly stigmatized. They’re often interrelated.”

Schreyer said that, in her experience, obesity specialists are not primarily interested in making their patients skinnier.

But Zeltser said her pediatrician constantly told her to eat less.

“He fueled my eating disorder,” Zeltser said.

Zeltser said she was sick to her stomach when she read the pediatricians’ new guidelines.

“Children should be able to be children. And I feel like these guidelines are taking away from their childhood,” Zeltser said. “I didn’t even have a childhood because of my eating disorder.”