When a Sore Throat Attacks the Brain

My child caught a cold and lost her ability to function. The fight to treat her illness, PANS, consumes my life.

Photo: Vanessa Heins for New York Magazine

Photo: Vanessa Heins for New York Magazine

Photo: Vanessa Heins for New York Magazine

One Friday morning in September 2025, my 8-year-old daughter, Rose, woke up with a sore throat. Since her toddler years, we have asked her to hold her hands apart to show us how bad something hurts. That day, she separated her palms four inches: medium. I held the thermometer to her forehead (99 degrees) and then got her cozy on the sofa with The Nightmare Before Christmas and a box of tissues. Over the weekend, she cheerfully stayed there, rotating through old Disney Channel shows, Labyrinth, and her favorite spooky cartoon, The Haunted House. By Sunday evening, she was asking if we could visit the splash pad in our Toronto neighborhood, and when she returned to school on Tuesday, my husband, David, her 1-year-old brother, Calvin, and I all seemed to have come down with the same illness. It felt like a minor cold.

But over the next few days, Rose started to change. First, it was her limbs. As she was falling asleep one night, her arms and legs suddenly and uncontrollably shot out in front of her, like she was imitating a zombie. If she tried to relax, her abdominal muscles would contract, forcing her to sit upright. This happened dozens of times over the course of an hour, so David took her to the emergency room while I stayed home with our sleeping baby. After Rose’s preliminary blood work came back normal, the doctors attributed the movements to an unusual viral symptom. But not long after, there was a new problem: Rose told us she felt like she was “vibrating inside.” We brought her to a pediatric emergency clinic but were given the same explanation. I called her pediatrician, who said that while he had never heard of a virus having this effect, he was unconcerned and asked me to call again if her symptoms changed. He said she was well enough to go back to school.

But as David drove Rose to drop-off three days later, she started to wail. In the rearview mirror, David could see her eyes transform, becoming both unseeing and manic. Arriving at school, she could barely speak. After he opened the door to the back seat so she could get out, she repeatedly tried to choke David and arched her back and kicked her legs.

David forced her back into her car seat and drove home. I asked her what she was feeling, and she could only repeat that she wanted to hurt us. She tore off her clothes and started to screech and wail.

I called our pediatrician and asked what we should do. He said that if we went back to the hospital, we would just be sent home again. He explained that sometimes a virus can cause surprising symptoms and gave the example of elderly people developing psychosis with urinary-tract infections. He offered to call in some Ativan to help her calm down while we waited for this to pass. To be safe, he initiated a referral to a psychiatrist.

As I left for the pharmacy, taking Calvin with me, I could hear Rose in our finished basement with David, kicking the walls and screeching. I said “hello” to a neighbor and felt like I had a secret, as if my life were suddenly different from theirs. After I returned with the medication, David and I struggled to place it under her tongue without her biting our fingers. After we succeeded, I set a timer on my phone to see how long it would take to kick in; once she was calmer, we could come up with a plan. But she didn’t improve. We gave her a second dose, then a third, and still she screamed and kicked.

It was almost impossible for me to communicate with David because her wails were too loud to speak over. She also couldn’t eat or use the toilet. Around 4 a.m., she fell asleep and David ran up to our bedroom to talk. But she was awake again by 4:30, and he was back downstairs holding her; on the way down, he hid the kitchen knives.

We tried to care for her at home through the weekend, but she screamed 16-to-18 hours out of every 24, and Ativan only slightly diminished the strength of her punches. Sometimes she exhausted herself and drank a little chocolate milk or hid under her favorite blanket, but mostly she screamed, arched, kicked, and bit. David was covered in bruises. I kept Calvin with me in the main bedroom, where I could put the most space between us and the noise. At some point in the chaos, I remembered a memoir I had read more than a decade earlier, Brain on Fire, by Susannah Cahalan, which chronicles the author’s battle with psychosis brought on by autoimmune encephalitis. Rose reminded me of Cahalan — and I wondered if she might have the same disease.

By Sunday, David couldn’t spend another night awake and we knew Rose needed to be hospitalized. As I knelt on her floor, packing her tiny T-shirts and her favorite Dory Fantasmagory book, I started to weep. The contrast between my daughter now and a week before was nearly impossible to fathom. When I closed my eyes, I could still see her dancing around the house singing made-up songs about Maleficent and Komodo dragons in her signature exaggerated vibrato.

At the hospital, David learned the pediatric psychiatric unit was full, so, if admitted, Rose would be held on the adult floor and would have a roommate. The psychiatrist said she had an “undefined mental illness” and she needed a referral to a pediatric psychiatrist for a more specific diagnosis. As a social worker familiar with the Diagnostic and Statistical Manual of Mental Disorders, I already knew her symptom progression did not match a recognized mental-health diagnosis. Over the phone, I asked him to check for seizures or a brain infection. He said that Rose’s presentation didn’t match those diagnoses but that he would page a pediatrician for a physical examination. The pediatrician looked in her ears and listened to her heart and then called me. “This is not medical,” she said. “As we have already told you, she needs a psychiatrist.” Rose was discharged with a higher dose of Ativan. When we brought her to an outpatient clinic to see a pediatric psychiatrist a few days later, she tried to jump from our moving car.

I don’t know how long this pattern of ER visits and outpatient referrals might have continued had I not texted a group of friends that evening to share Rose’s story. I was just looking for comfort, but one friend—a doctor—texted back an idea: “Have you looked into PANS?”

PANS, or “pediatric acute-onset neuropsychiatric syndrome,” is a form of brain inflammation caused by infection. Almost any description of its impact on a child comes across as hyperbolic to those who don’t know about it. The physical and emotional pain is so severe that 42 percent of children who develop it by the age of 10 discuss suicide. A survey of 161 patients with PANS found that 14 percent had attempted suicide, including several who were 7 or younger. One 8-year-old started urinating 30 times a day, stopped eating, and became so angry his parents were forced to hide all their scissors and knives. A 17-year-old told me that when she was 10, she woke up with intrusive thoughts. “I didn’t know what suicide was. All I knew is that I wanted to be dead,” she said. A 9-year-old developed uncontrolled blinking and rage and had to be carried out of class. A few PANS parents told me their children have attempted to jump from moving cars, just like Rose did. In fact, the PANS website for physicians mentions jumping from a car as a hallmark of severe disease.

The formal introduction of what would become known as PANS came from Susan Swedo, a National Institutes of Health researcher, in 1998. Back then, Swedo called it PANDAS (“pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections”) because the symptoms were tied only to strep throat. Doctors at Stanford and the NIH renamed it PANS in 2014 after they discovered that infections and viruses other than strep — Epstein-Barr, COVID, mycoplasma, Lyme, and influenza among them — can bring about a similar neurological response. (In one recent survey of 103 patients referred to a UCLA PANS clinic, only 3 percent of patients’ illness stemmed from strep and 77 percent traced the condition to another infection.)

After my friend’s text, I pulled up a list of the signs of PANS on my phone for the first time. An abrupt onset of OCD symptoms or food restriction; anxiety; emotional lability; irritability; aggression or severe oppositional behaviors; developmental regression; motor abnormalities; sleep disturbance; incontinence. I couldn’t believe it. The entire list matched what we were observing.

I called our pediatrician to share the breakthrough and was stunned when I was immediately met with skepticism. He told me that parents often blame PANS because they don’t want to come to terms with their kids’ mental illnesses and that he didn’t believe Rose had it. I got off the phone and called a local neurologist for a second opinion. He told me, as a rule, he does not treat PANS because it “isn’t widely recognized.” As I researched more online, I soon realized that for as long as PANS has been defined, there has been a vocal community of physicians actively railing against it. Their campaigning had created “bad buzz” for the diagnosis and led to a gaping chasm between doctors in everyday practice and academic centers like Stanford, Dartmouth, and Mass General that are actively researching and treating the illness.

I dug further and, in Reddit forums and Facebook groups, discovered countless families who seemed to have gotten trapped in that void — convinced their child had PANS and unable to find a physician who was willing to treat it or had even heard of it. Some, in their desperation, turned to alternative-medicine grifters pushing bizarre, poorly researched treatments like blood ozone cleansing, peptides, and anti-parasitics. These practitioners discredit the validity of the illness itself just through their association with it. Even well-resourced parents with direct connections to medicine seemed to struggle. One analysis of 11 children with PANS whose parents were doctors found their average time to diagnosis was eight months and, in that time, two of the children attempted suicide and five had suicidal ideation. A doctor I spoke to told me she once treated a patient who had visited Los Angeles emergency rooms 220 times before receiving a diagnosis.

I vowed to do anything in my power to save Rose.

Over the past 28 years, scientists at Columbia, Yale, and Harvard have made significant strides in revealing what happens to the brain of a child (and, in rarer cases, an adult) with PANS. To put it as simply as possible, when anyone gets sick, their immune system deploys white blood cells to attack the infection. For the unlucky few who develop PANS, some of these white blood cells, called Th17 cells, travel along a nerve in the nose into the brain, where they can disrupt the blood-brain barrier, allowing immune cells into the basal ganglia. There a cytokine (protein) called IL-17A causes inflammation and damages specific neurons that affect motor control and emotional regulation. Researchers do not yet know why brain inflammation develops after illness in some people and not in others, though they have found links to other autoimmune processes as well as evidence of a genetic predisposition. Some estimates put the risk of PANS at around one in 1,000 children; another study found that one in around 12,000 children will develop PANS every year.

A reliable test for the disease is still elusive, so diagnosis currently hinges on developing sudden-onset OCD or restrictive eating and at least two out of nine concurrent symptoms, which include aggression, motor abnormalities, and sleep changes. The research on treatments is more robust. When I realized that Rose likely had PANS, I was able to find study-backed treatment protocols from PANS clinics at Stanford and Dartmouth. In addition to psychotherapy, most scientific papers endorsed a course of antibiotics (many suggest azithromycin, which is commonly used to treat sinus infections and pneumonia, because it has a secondary benefit of reducing inflammation) and a separate oral anti-inflammatory like ibuprofen as a first step.

Our pediatrician eventually — albeit tepidly — ordered a short course of azithromycin for Rose. I convinced him there was no harm in trying, and he conceded she could have a lingering strep infection. About 24 hours after her first dose of the drug, plus liquid doses of children’s Advil, Rose slept through the night for the first time in a week. She was still in distress — barely speaking, unable to wear clothes, only drinking chocolate milk — but she stopped hitting and attacking us. David was finally able to leave her alone for a few minutes. The improvement indicated, to us at least, that we were on the right track. But our pediatrician was not convinced. He didn’t think it was necessary to extend her dose of azithromycin. So like many PANS parents, I found myself, someone who up until then had been a medical-rule follower, improvising in order to access care. I asked around in various PANS groups and found a nurse practitioner in another Canadian city who, for a fee, agreed to meet virtually with me and prescribe the azithromycin. The appointment felt strange and sad: Never in my life had I gone against my pediatrician’s advice or behind his back. I missed the comfort and trust of being with our normal doctor and getting care at our local hospital. But I was willing to take the risk to bring Rose relief.

Ten days later, we had a virtual appointment with a PANS specialist, a pediatrician in Chicago at Hinsdale Hospital whose name I had seen as co-author on a few medical-journal articles. He called Rose’s case “textbook” and suggested a longer course of antibiotics and naproxen (an over-the-counter anti-inflammatory) and told me that eventually oral steroids and IVIG — an IV immunoglobulin (antibody) therapy made from pooled plasma donations — might be necessary too. He said he could prescribe IVIG, but we would need to fly to Chicago to receive it, and I did not see how we could get Rose on a plane. IVIG is used to treat a number of immune-related conditions, including Kawasaki disease and Guillain-Barré syndrome. The current PANS treatment guidelines from the NIH and Stanford indicate that patients with moderate or severe PANS should receive IVIG monthly for up to a year. The dose is quite high and must be given slowly, commonly over one-to-two full days. In 2016, researchers at Yale and Harvard found that a single IVIG dose reduced symptom severity but failed to reach statistical significance after six weeks; however, 24 weeks after only two treatments, the severity of PANS symptoms had dropped by 62 percent. A 2021 multicenter study gave six infusions over six months and saw significant improvement across every measure with OCD scores falling by more than half.

We also called a small PANS clinic at the children’s hospital near our home in Toronto, but the first available appointment wasn’t until January 23 — four months from the start of Rose’s illness. In the meantime, her symptoms continued to improve but her life was far from normal. She no longer attended school, and five weeks into her antibiotic and naproxen treatment, she screamed for two-to-three hours a day instead of 16. She spent most of her time under a fuzzy blanket in the basement watching YouTube or playing Minecraft. (Before PANS, she’d had very little screen access.) She slept through the night about 60 percent of the time. She could not tolerate wearing clothes, keeping the lights on, leaving the basement, physical touch, or talking. Her diet remained limited: She could eat a short list of safe foods, but if the plating went awry — say, the pizza-sauce packet did not open in a straight line — the food became inedible to her.

In December, another PANS specialist in upstate New York whom I had contacted while searching for care closer to home, told us the time had come to try IVIG. She ordered one dose to be administered over two days by a nurse in an Airbnb in Buffalo, just across the border from Canada. This nurse would also monitor Rose’s vital signs throughout the therapy and give her medication to help with side effects like nausea and headaches. The treatment itself would be painless. We would pay $15,000 out of pocket. It was expensive, but if it worked, we would be able to advocate for the same treatment at home in Canada, where we wouldn’t have to pay.

David took the two-hour drive with Rose, and they spent three nights in the Airbnb. Friends set up a support network in Buffalo for the short visit, including an attorney and a social worker in case Rose’s distress led to issues at the border. After Rose returned from New York, she curled up in our basement under her blanket while we sat nearby, ready with a barf bucket. Within a few days, we started to see a shift. She asked to put on her favorite dress. She went to her room and found a book to read. She asked if we could watch Wicked while I styled her hair. She wanted to try a new food. After ten days, she started to sing.

It’s not uncommon for gains in medical research to take years, if not decades, to progress from laboratory discoveries to standards of clinical practice that are covered by health insurance. But when it comes to recognizing and effectively treating PANS, the biggest hurdle for the past 28 years has been disdain from wide swaths of the medical profession. When many doctors hear the word PANS, their automatic response is cynicism. This negativity stems in large part from opposition by a few prominent neurologists who believe PANS patients have one of another set of disorders, such as OCD. After Swedo published her research on the illness in 1998, these doctors, including Jonathan Mink, Harvey Singer, Robert Kurlan, and Donald Gilbert, very publicly criticized her research. In a series of commentaries and prospective studies, they argued that the strep-to-symptoms link had never been proved and that children with PANDAS symptoms often didn’t test positive for strep. Later, this claim bolstered the finding that PANS can arise from any number of infections and is not limited to strep, but at the time, the neurologists deemed the lack of correlation as an indicator that the illness was essentially bunk.  

Kurlan and Gilbert are both neurologists who treat Tourette’s syndrome, which has some overlapping symptoms with PANS. (In 2010, Swedo told Scientific American that she thought as many as 25 percent of children diagnosed with OCD and tic disorders could have PANS.) Between 2010 and 2020, Gilbert published one article every two years expressing skepticism about the validity of the PANS diagnosis and the evidentiary basis of Swedo’s work. He argued that efforts to find a definitive autoantibody have produced inconsistent results and that children with psychiatric-only symptoms are best served by the treatments studied in randomized trials for OCD. One of his most widely circulated articles is Inflammation in Tic Disorders and Obsessive-Compulsive Disorder: Are PANS and PANDAS a Path Forward? Further, Gilbert’s conflict-of-interest disclosures show that he has received honoraria and/or travel support from the Tourette Association of America and the American Academy of Pediatrics as well as funding to be a clinical-trial site investigator for a company developing a Tourette’s drug, ecopipam. At a talk at Cincinnati Children’s Hospital in 2018, Gilbert argued that physicians should “inoculate the family with education so they do not seek out a PANDAS/PANS clinic.” Gilbert declined to be interviewed for this article but did email me a PDF of his 2018 and 2019 articles.

In 2024, the American Academy of Pediatrics published an official report on PANS authored by a committee of doctors. In a breakthrough for advocates for the disease, the report states for the first time in AAP history that PANS is “likely valid.” But it stops short of legitimizing the treatments PANS clinics around the nation (and across much of Europe) have come to see as lifesaving. Instead, the paper states that PANS should be treated with the medications and behavioral therapies approved for obsessive-compulsive disorder and Tourette’s syndrome — namely, cognitive behavioral therapy and SSRIs — until additional research is completed. “Parent training should be offered to help the caregiver move the child back to normal sleeping arrangements and activities,” it adds.

The AAP PANS paper is unusual in that it is attributed to the board of directors as a whole and carries no named authors, individual institutional affiliations, or individual conflict-of-interest disclosures. I asked the AAP’s chief medical officer, Dr. Lee Savio Beers, why that is.

“We do this occasionally,” she said, “particularly when it is a topic where it just has great import for the field and we know there may be a lot of questions about it so we kind of want to be able to answer those questions as an organization.” Some of the foremost specialists from the handful of PANS treatment centers in the U.S. were not invited to contribute. When asked to provide additional clinical reports without named authors, the AAP supplied a short list of general literature on subjects like hate and equity, stretching back decades, rather than precise guidelines; the organization issued 16 clinical reports, all with named authors, in 2025 alone. There were no other clinical reports with unnamed authors.

The AAP paper warns against IVIG except in very rare cases, citing the need for a better understanding of PANS before clinicians pursue what the organization deems an expensive and unproven treatment. However, only one study on the behavioral therapy the paper does endorse — CBT — has been conducted on PANDAS. There were seven participants and no control group. Six of the seven participants had clinician-reported improvement but did not self-report improvement. Only three had clinician-reported improvement at the three-month mark. There have been zero studies on the use of SSRIs for PANS. While it is widely used to treat OCD, OCD symptoms are not present for every PANS patient, and they’re often the last to resolve in treatment. Psychiatrist Kiki Chang, who has been treating PANS for almost two decades, has found that antidepressants can make his PANS patients worse, especially if they’re experiencing inflammation.

Beers explained that the report’s treatment recommendations and warnings were limited by a lack of research, though, curiously, it cited none of the 36 PANS-related articles the PANDAS Physicians Network catalogued between 2020 and 2024 — including recent research on the efficacy of IVIG. When I asked Beers if she believes PANS is valid, she said it is “very real” but, regardless, the AAP would not be updating the language of the report to reflect that.

This is not merely an academic or a clinical issue. Insurance companies now cite the AAP’s document as a rationale to deny coverage for IVIG, antibiotics, and, in some cases, the initial diagnostic workup for PANS. One mother I spoke to whose son is being treated at Dartmouth has been trying to get insurance coverage for IVIG for almost a year as her son continues to cycle in and out of the hospital without it. Research shows that many parents whose children have PANS are forced to sell major assets, such as cars and houses, to afford treatment. I brought up the insurance denials to Beers. “That is a very real issue,” she responded. “I don’t want to minimize it at all for families.” But she laid the blame on problems with health-care financing — not with the report the insurance companies are citing. I told her the British Paediatric Neurology Association recently committed to replacing a similar report that recommended CBT and SSRIs for PANS patients after determining it was being used to deny other, potentially more effective treatment options. “The group stands behind the report as written,” Beers reiterated.

Sheilah Gauch is a social worker and school principal whose son, Ian, suddenly developed anxiety, rage, and symptoms of OCD when he was 5. Over the next few years, his decline continued and he had to leave his elementary school to attend a therapeutic day school, where he was often held in restraints. The police regularly visited Gauch’s house in the Boston suburbs for wellness checks spurred by Ian’s loud rage spirals, which her neighbors often noticed. Her relationships with them and with other friends grew increasingly distant as Ian’s well-being worsened. “When you have a kid with mental illness, it’s not like anyone comes to you and says, like, ‘Would you like a casserole?’” she told me. She tried every therapeutic modality she could find for Ian and cycled through multiple medications. None of it worked. “It was right around that time when I literally had just lost hope,” she recalled. “I thought I was going to lose him.”

When Ian was 11, six years after his initial symptoms began, a psychologist friend of Gauch’s told her about PANS. Gauch brought it up with Ian’s pediatrician, who ran labs and discovered high levels of strep and mycoplasma antibodies in Ian’s blood. Ian started on antibiotics and anti-inflammatories, and within two weeks, his rage abated and his OCD faded. He laughed for the first time in years. When his improvement stalled, his care team suggested IVIG. It was then that he experienced profound recovery. They went Christmas shopping at Kohl’s, which Gauch said felt like a miracle. Ian returned to his community school. He graduated from high school. He is now in college, where he is thriving.

This progression — years of distress, a PANS diagnosis, some improvement with antibiotics, and then profound improvement with IVIG — showed up often in my interviews with patients. In my interviews with doctors who treat PANS, a different pattern emerged: All of them struggled to fund their research and get insurance coverage for their patients, and most battled constant disdain and even humiliation from their peers. One PANS specialist at an Ivy League teaching hospital told me flat out, “It’s embarrassing to treat PANS.”

I spoke with one prominent PANS physician who said that medical skepticism about the condition is so pervasive it can be difficult to admit patients and get them care. For those who need treatment in the pediatric ICU, doctors must time their admission to line up with the rare physician who accepts PANS as a valid diagnosis. Patients who would best be cared for in a hospital receive their treatments in a clinic or at home instead. Chang, the psychiatrist, explained that the few physicians who treat and research PANS have their own network in which they figure out how to help their patients get insurance coverage and inpatient medical care. But sometimes it’s not enough. “I just end up berating ER docs until they admit my patient,” he said.

Rheumatologist Jennifer Frankovich has directed Stanford’s Immune Behavioral Health Program since 2012, treating PANS patients and spearheading research. She splits her time between patient care and research and travels around the country giving lectures on PANS. Her goal is to convert other physicians, but “what people learn in med school, in residency, they fixate on, and it’s really hard to change their belief system,” Frankovich explained. “We’re trying to flood the doctors in hopes that the tidal wave of science will convince them.” Williams, the lead author on the 2016 Yale and Harvard study, said the research is so robust now that the only question is whether it can “penetrate through to a general practitioner.” He contends that communicating information about an illness with psychiatric symptoms is rarely enough to shift perceptions of it.

Funding for PANS research is sparse. The NIH provided just $3 million for it in 2025. Frankovich’s research funding, in fact, comes mostly from families impacted by PANS. “I was fortunate that we have families that have donated to the clinic. That’s how we collected data,” she said. “It wasn’t the NIH.” At Dartmouth, Richard Morse, a pediatric neurologist, explained the research there has been partly funded by physician colleagues whose kids became sick with PANS.

Once Rose received her PANS diagnosis, I didn’t reconnect with any of the pediatricians or psychiatrists who’d had other explanations for her symptoms or labeled them as mental illness to tell them about her diagnosis and the treatments that had helped. I didn’t want to open myself up to being dismissed again. What parent would? Plus the system doesn’t have any process in place for this kind of follow-up. But if doctors never find out when they have been wrong, they are almost guaranteed to repeat their mistakes.

Advocacy groups, often led by parents, are leading multipronged efforts to improve care for those with PANS. Some are pursuing statewide laws that would require health insurance to cover IVIG once other treatments have failed. These mandates have already passed in 13 states. (When a recent effort failed in Washington, legislators cited the AAP’s PANS statement to defend their vote.) Angela Tang, an internal-medicine physician who works with Frankovich, helped advocate for a California law mandating IVIG coverage, which took effect on January 1, 2025. She called the legislative success “probably my life accomplishment.”

Some of the most ardent advocates for PANS research have become involved to honor their children who have died. Alex Manfull was a sophomore at Princeton when she developed mononucleosis and strep. The illnesses resolved, but in their wake, OCD appeared. She was sick for six more years with what she eventually learned was PANS. Shortly before her treatments were to begin, she died by suicide. Her parents, Susan and William Manfull, established the Alex Manfull Fund, which strategically promotes awareness, research, and education. They donated their daughter’s brain to Georgetown University, where the brains of others who have died from PANS have since been donated. Recently, the donations enabled a discovery: injuries in the basal ganglia as well as Alzheimer’s-like cellular changes in the brain.

After our six months of advocacy, filled with hundreds of phone calls to doctors and medical coordinators, Rose is now receiving monthly IVIG treatments at the children’s hospital near our home. She just finished her fourth dose. Our lives are still completely different from a year ago. She isn’t in summer camp. She didn’t attend school for all of last year. She leaves the house to visit a playground twice a month at most. I try not to think too much about the future or what will happen when she catches another virus.

For parents whose children develop PANS, the change we witness is terrifying. The babies whose doughy bodies we once rocked to sleep, whose grapes we once cut into quarters, now sob in the dark, unable to talk or eat. Before Rose was treated, my husband and I used to whisper to each other, “It’s like she’s been possessed. Our child has vanished.” She spent 90 days in so much agony she couldn’t tolerate my touch. My care for her became an engine driven by devotion but no longer fueled by connection.

Now, I hold on to tenuous hope. I try every day to notice the moments we couldn’t experience when she was at her sickest. Like the one on April 22, after her second dose of IVIG, when Rose did something that had been impossible for the seven months before: She walked up to me at bedtime and reached out her arms for a hug.

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