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What's wrong with Brooke?

With the combination of a disability, trauma and a medical mystery, Mississippi didn't know what to do with Brooke. Now she's slipping away.

Three years ago, Brooke Conner walked into her parents' bedroom in the middle of the night and fell into the large brown leather armchair next to their bed, writhing like a snake.

"I'm dying," she told them.

"And I thought she was," Brooke's mom, Lisa Conner, said.

Earlier that day, Lisa had followed a doctor's instructions and taken her then 34-year-old daughter off a drug called Topamax, medication she was taking to relieve migraines.

Brooke has intellectual disabilities, paired with a childhood trauma, and had lived up to that point a mostly sheltered life with her parents, Lisa and Thomas, in their Dixie home in Forrest County. She'd never experienced anything like this.

The episode spawned a series of events — including a stint at a mental hospital where the family alleges Brooke was neglected for days, a claim the attorney general's office found unsupported — leaving her virtually unable to walk or communicate today.

The Conner family has faced countless roadblocks in the last three years as they've tried to navigate the local hospitals and mental health system.

The Medicaid-provided in-home care has been ineffective. Calls to the Community Mental Health Center's Mobile Crisis Team have gone unanswered. A state attorney general investigation into Brooke's care met a dead end. The most recent hospital discharge attempt resulted in a car accident after Brooke had been poorly restrained.

And they have yet to achieve a diagnosis.

Brooke, a pretty, petite 37-year-old with child-like expressions, is an artist. Her paintings contain confident, dark lines resembling stained glass pieces, with whimsical yet somber-faced subjects.

Artwork painted by Brooke Conner adorns walls of her family home. (Photo: Justin Sellers/The Clarion-Ledger)

She has two pet birds that live in a cage in her empty bedroom; even more live on the tree next to the window. Brooke loved to spend afternoons bird watching on her family's large, wooded property outside Hattiesburg.

She also sings — Norah Jones a favorite.

Even after she became sick, Brooke could make anybody laugh. There's a video of her bouncing up and down in her bed during one hospital stay, laughing and playing the air guitar to "Walk Like an Egyptian."

Sometimes still, little bits of Brooke appear. Like last December, when she remembered the words to the 2002 song "Don't Know Why" and delivered it perfectly.

"Her mind is in there," Lisa said.

Two parakeets in a cage in Brooke Conner's bedroom stare out the window at a bird feeder. (Photo: Justin Sellers/The Clarion-Ledger)

But she's mostly different now, confined to a hospital bed and often behaving erratically. Her condition, not fully understood, manifests in a movement disorder, causing awkward, repetitive motions, like swinging her hands back and forth.

Other times she hits, kicks and screams curse words at those trying to care for her.

"My daughter was sunshine. She was never like this. She should have never wound up where she wound up," Lisa said. "I'm not saying that this might not turn into some rare disease that was degenerative, but I honestly think if the system hadn't failed her at every step of the way, I don't think my daughter would be like this today."

Brooke's story highlights current shortcomings in the crucial relationship between the mental health system and general health care providers — hospitals, clinics and primary care doctors.

Brooke was rushed to the hospital after that first fainting episode on March 6, 2015, after quitting Topamax cold turkey, which can cause severe withdrawal symptoms. Lisa says now that, if she had known the side effects, she wouldn't have allowed Brooke to take the medication in the first place.

Forrest General Hospital doctors diagnosed Brooke on a Saturday with chest pain and fainting caused by low blood pressure and sent her home. But the attack occurred again the following night.

Lisa and Thomas Conner sit in their home outside Hattiesburg Monday, Jan. 8, 2018, and talk about the series of events that led to their daughter being hospitalized. (Photo: Justin Sellers/The Clarion-Ledger)

When the AAA Ambulance technicians arrived this time, Lisa said, they refused to take Brooke back to the hospital. Brooke continued to deteriorate, so Lisa took her to Forrest General two days later. The ambulance service did not return calls for comment.

Lisa said Brooke's emergency room doctor barely examined her directly and that she was only given the option to see a neurologist or a psychiatrist, not both.

"You're this or you're that. You can't be both," said Brooke's father, Thomas Conner. "If you're sick and crazy, you're screwed."

Forrest General officials said they were prohibited from commenting on Brooke's case, citing patient privacy laws, and would not agree to any interviews for this story, even if they received permission from the parents.

In the emergency room Monday, Brooke hallucinated and talked about suicide. Hospital officials wanted to place her in a psychiatric facility, but Lisa said even the admissions adviser knew she was in no medical condition to go.

In the mental health field, it is a general rule that patients must be medically stabilized before being placed in psychiatric treatment. Medical records say Brooke was medically cleared but refused to go to Pine Grove Behavioral Health & Addiction Services.

Experts also stress intervening on someone in psychiatric crisis within 24 hours, because the more quickly a person is stabilized, the less likely the person's condition will worsen or result in permanent damage.

Brooke continued to fall through the cracks.

Doctors diagnosed her with insomnia and sent her home again. In the following days, Brooke saw a new neurologist, who prescribed her Xanax, resulting in a paradoxical reaction so severe, Lisa said, "by Friday, she is running around the house; she's bonkers."

Pine Grove Behavioral Health, Hattiesburg, Miss. Monday, Jan. 8, 2018. (Photo: Justin Sellers/The Clarion-Ledger)

Despite her family's concerns about her medical stability, and without a psychiatric diagnosis, they followed the hospital's direction to go to Pine Grove, a mental hospital and extension of Forrest General.

Thomas and Brooke's brother Brian Conner drove Brooke — who was hostile but mobile — to Pine Grove on a Friday.

It was the last day her family would see her walk.

Brooke's relatives were shut out of her care during her voluntary five-day stay at Pine Grove, which ended abruptly after Brooke had become violent, catatonic and required medical attention. Limited contact with patients initially is common in mental hospitals, but Lisa said she never even got a chance to tell Pine Grove doctors her daughter is allergic to chocolate.

Brooke was rushed back to Forrest General.

"I got in through the (Forrest General) emergency room door and then got into the trauma room. I couldn't believe my eyes," Lisa said. "She was under the sheets like a wild animal. She did not know who I was. She looked sunburned. Her ears were, like, red; the tops of her joints, her fingers, they were red ... She was severely dehydrated. They told me she was eating and drinking, but she was not."

Lisa Conner looks at a photo of her daughter Brooke and her grandmother taken Feb. 24, 2015, just two weeks before a reaction to changes in medication landed her in the hospital. (Photo: Justin Sellers/The Clarion-Ledger)

Her parents believe a combination of medications given to Brooke in Pine Grove, including Ativan, an anxiety medication, and Zyprexa, an antipsychotic, worsened her condition.

Records from Pine Grove indicate Brooke was a "limited historian," confused, refusing to eat or drink and could not communicate beyond a nod. Records also said the risks and benefits of the psychotropic drugs they gave Brooke "were discussed with the patient."

Brooke was transferred from Forrest General to Oschner Medical Center in New Orleans in April, and by June, her full list of diagnoses included more than a dozen problems including brain disease, malnutrition, catatonia, an abnormal brain MRI and she required a feeding tube.

"Of all the different experiences in the last three years we could talk at length about, the most pivotal, important part of the story is how she fell through the cracks when she was trying to raise the alarm bells, when she first started having this reaction to her medication," Brian, the brother, said. "I think we would really be in a different situation today had she not gone to Pine Grove."

Pine Grove officials also would not comment on Brooke's case.

Lisa Conner sits on her daughter Brooke's bed and talks about the psychiatric ward where she's currently living. (Photo: Justin Sellers/The Clarion-Ledger)

Pediatric geneticist Dr. Brian Kirmse, who has tested Brooke in hopes of finding a genetic answer to her condition, acknowledged the significance of her time at Pine Grove and that "the person Brooke was afterward was very different from who the parents described."

Brooke has an intellectual disability, which may have a genetic component and may trigger symptoms of a mental illness, Kirmse said, but she's not a straight behavioral health patient.

"But she went to Pine Grove nonetheless. It's indicative of a disjointed mental health and health care system," he said.

Lisa asked the state attorney general to investigate her daughter's care, primarily at Pine Grove.

Jeff Cook, Forrest General vice president and general counsel, and Debbie Sanford, Pine Grove administrator, said they were unaware of any probe into Brooke's care by the attorney general's office, nor did anyone visit the campus. The hospital officials only discovered after an inquiry that investigators had pulled Brooke's medical records.

A report in the attorney general's case file said investigators reviewed the records and a year later concluded "there is no evidence identified of willful neglect by prescribing physician or Pine Grove … It is recommended that this case be closed with no further action taken."

The family thinks Brooke may have experienced neuroleptic malignant syndrome, a life-threatening reaction to antipsychotic drugs, and she's been tested for porphyria, a disorder affecting the protein that carries oxygen in the blood and which can be drug-induced.

The medical phrase "diagnostic odyssey" describes what patients, and often whole families, go through to address rare diseases. One GeneAdviser blogger emphasized the toll of "seemingly endless hospital visits, unexplained illnesses and in some cases outright dismissal by medical professionals who can't find answers."

Lisa Conner has taken copious notes as she's cared for her daughter through endless hospital visits. She "lives by the calendar" in her kitchen, which has dozens of appointments scrawled on its pages. (Photo: Justin Sellers/The Clarion-Ledger)

The "odyssey" affects more people than one might think: Nearly one in 10 people will be affected by a rare disease in their lifetime.

On average, it takes eight years and countless trips to multiple doctors to receive a diagnosis for a rare disease. This March, Brooke is three years in.

"We'll probably exhaust our technological capability before we give up on trying to find an answer," Kirmse said.

Brooke's sister Jennifer Coursey said Brooke's care in the last three years has lacked continuity because each medical specialist has worked in silos, ignoring the effect of the body on the mind and vice versa.

Coursey, who lives in New Orleans and recently took over guardianship of Brooke, said she's had to tell Brooke's "life story" to countless doctors. They always want to know: "What's her baseline?"

"My sister, who cooked spaghetti and sang Bruno Mars in her bedroom and spent a ridiculous amount of time doing her makeup to go to Walmart — that is baseline," Coursey said. "It's a stupid question. It's always like they want to know, 'What's the minimum we have to get to before we can send her on her way?'"

Brooke Conner's stuffed animal goat lives on her bed at home in Mississippi while she's in the psychiatric ward at Ochsner Medical Center in New Orleans. (Photo: Justin Sellers/The Clarion-Ledger)

"I don't think anyone ever paid attention to the fact that she was actually a functioning person," she said.

Brooke spent several months in the hospital following her initial episode. For two years after that, her parents took care of her as she bounced between home and hospitals. The last three months, she's been in the psychiatric ward at Ochsner Medical Center in New Orleans.

Some days are better than others as doctors attempt to find the appropriate medication combination for Brooke. Recently, she's strung together phrases better than she has in months, giving her family hope she might improve.

Brooke's room in the family home outside Hattiesburg is painted yellow, her favorite color, and a goat stuffed animal lives on her twin hospital bed. Christmas gifts and cards sit unopened on her dresser. Lisa thought maybe they'd celebrate a late Christmas when she returned, but now she's not sure her daughter will be back.

The last time she was supposed to come home, at the end of December, Oschner discharged her to Thomas. He planned to drive Brooke home to Hattiesburg after the hospital told him she didn't qualify for an ambulance.

They didn't get very far.

Just after getting on I-10 headed to Slidell, a restless Brooke managed to unhook her restraints, which ended up wrapped around her neck. Thomas reached over to untangle her and in the struggle, his car swerved from the middle lane to the left, causing a wreck with two other vehicles.

Both of them ended up back at Oschner, Thomas now hospitalized with injuries to his back and arm. Their only car was totaled, leaving the parents with limited transportation to see their daughter after that.

Now two months later, Lisa faces the unbearable thought of allowing the hospital to find a facility to place Brooke, where she can receive the specialized care she needs, but which may be far away. Because she is in Louisiana, and they've found nowhere for her to go in Mississippi, her parents have had to give up guardianship of Brooke to her sister Jennifer to place her out of state.

"Nobody knows, to today, where she needs to be," Lisa said.

Mississippi has a program, called DETECT, dedicated to improving the health of folks with developmental disabilities by educating health care professionals about how to best care for them in the community.

The state also operates five facilities for folks with developmental disabilities, but the concern is that Brooke is now too medically ill to live there. Besides, she's never been evaluated by the state to determine if those services are appropriate.

Lisa said before the 2015 episode, you'd have to sit and have a long conversation with Brooke before knowing she was developmentally delayed.

Christine Keiper, associate director of the Library of Hattiesburg, said Brooke was what she calls an "independent library user." Brooke visited the library with her mom nearly every week before she became sick.

"She had that smile that lights up a room," Keiper said. "Honestly, I did not know she had a disability until she was sick and wasn't able to come to the library."

Still, Brooke's parents viewed her disability as insurmountable. She didn't actually graduate high school, never worked and never participated in any programs outside of her parent's supervision. They feared she was too vulnerable, partly because of her PTSD-like symptoms, which they believe resulted from a past sexual abuse.

When Brooke was 10, her family learned she had been molested by a neighbor close to her age. She received some counseling from the local Community Mental Health Center, Pine Belt Mental Healthcare Resources. Her brief history with Pine Belt is one reason the family believes Brooke may have been inaccurately characterized as having had a history of mental illness.

Developmental disabilities and mental illnesses, while distinctly different, are often confused. But they can also co-occur.

Experts have estimated that roughly one-third of folks with intellectual disabilities also have a mental illness.

"Social isolation and exclusion with no hope of change, combined with already-existing brain differences, set the stage for mental illness," wrote Maria Quintero and Sarah Flick in a 2010 issue of Social Work Today.

Brooke Conner sketches the outline for a painting during a trip she took in her 20's to visit her brother in Chicago. (Photo: Special to Clarion Ledger)

Brooke's parents worried her obedient nature would always make her a target for abuse, so when she got older, she didn't participate in any of Pine Belt's programs for folks with developmental disabilities or any other vocational programs. Most of her socialization revolved around her parents, like visits from Lisa's artist friends.

"It was the safest situation for her, where she was most loved," Brian said. "I'd be lying if I said it didn't cross my mind if that was what's best ... Is that the best for her to progress and pursue happiness?"

Renee Brett, director of the Department of Mental Health's Bureau of Intellectual and Developmental Disabilities, said some state services she oversees consist of simply helping folks participate in the community — taking them out to eat or to a movie.

"It's important for people to be able to experience life just like you and I do, and I think that's our goal," Brett said.

Brett also stressed the importance of employment opportunities. "They need to be able to use their skills and abilities just like anybody else," she said.

The effect of these opportunities on a person's overall health cannot be understated.

But even beyond concerns of abuse, the family didn't generally have much confidence in the system. In one vocational program early on, Lisa said, Brooke was going to be expected to work in a box factory.

In her school days, Brooke was separated into special education courses, often with students at much lower learning levels. Her eighth-grade teacher in home economics, one of the only classes she had with all the kids her age, said Brooke "had a special greeting every morning for everyone in the room."

"She was just a wonderful example of someone who's truly happy," said teacher Martha Williams.

But she was never challenged, Brian said.

"Just like in the medical system, she fell through the gaps in the educational system back then," Brian said. "I think she was sheltered, but I think her being sheltered was a natural response to some failings of the system at large."

The "gaps" are many. Since 2015, sheriff's officers or volunteer firefighters have made seven visits to the Conner home for Brooke's medical emergencies, during which she tends to become violent.

Local law enforcement has a relationship with Pine Belt's Crisis Intervention Team, which aims to quickly connect folks in crisis to counselors and psychiatrists. But they've never collaborated to assist the Conner family.

Thomas said he's called the Mobile Crisis Team hotline as recently as December and had to leave a message. There was no call back.

Lisa Conner has taken meticulous notes while caring for her daughter Brooke since 2015. One note reads: "Called — no call back. 12-6-17. Crisis # 888-330-7772." (Photo: Justin Sellers/The Clarion-Ledger)

Psychologist Rita Porter, who oversees the division responsible for the crisis teams at Pine Belt, said the crisis hotline is supposed to be accessible at all times. She couldn't explain why Thomas didn't get a call back but promised to look into it.

Porter also said the center is still working through multidisciplinary teams to educate all agencies about their services.

While they've been working with the sheriff's office for at least a year, "I can't say every single sheriff's officer is aware of the mobile crisis teams."

This is a struggle for virtually all of the 14 Community Mental Health Centers across the state. The crisis teams, operating on state grants, are managed differently and have had varying degrees of success.

The focus of recent efforts to strengthen Mississippi's mental health system, currently the subject of litigation by the U.S. Department of Justice, has been the relationship between state mental hospitals and community providers. Federal authorities have cited the state for relying too heavily on institutionalization, something the Department of Mental Health has recently acknowledged with first-ever plans to divert funds from hospitals to the community.

When anyone in Mississippi leaves a mental hospital like Pine Grove, the Community Mental Health Centers are supposed to help facilitate what's called a "warm handoff."

Coordination and communication are essential to ensure anyone managing a mental illness is given support when they return to the community.

Pine Belt Director Jerry Mayo acknowledged his center's relationship with Pine Grove, a private entity, is not as strong as it is with the state hospital.

While a patient should receive materials about Pine Belt's services when they leave Pine Grove, the two don't necessarily communicate about discharges so that the community center can proactively locate the patient.

It didn't work in Brooke's case.

With little help from state or other services, Lisa and Thomas have tried in the last three years to care for Brooke, through mental and physical decline, violent episodes and constant trips to the hospital.

"It's like our whole life stopped," Lisa said.

In the fall of 2015, Brooke started receiving services through Medicaid's Elderly and Disabled Waiver, which provides in-home care similar to that offered in a nursing facility.

Unopened Christmas presents sit on a dresser in Brooke Conner's bedroom on Monday, Jan. 8, 2018. (Photo: Justin Sellers/The Clarion-Ledger)

"It has helped somewhat. I would say it's a broken system. You get a lot of diapers and wipes and lotion," Lisa said. "It basically comes down to diapers, wipes and lotion."

The Conners said the contracted staff was ill-equipped to handle someone in Brooke's condition, let alone provide actual therapy. Some workers, Lisa said, were unable to safely lift Brooke. Thomas found the arrest mugshot of another online.

The Department of Mental Health does administer a community-based waiver program specifically for folks with intellectual and developmental disabilities, but a funding cap imposed by the Legislature resulted in the program's frozen enrollment. Proposed legislation would remove the cap for the coming year.

Still, it takes, on average, seven years from the time a person applies for the program for them to start receiving services.

And more than 1,650 Mississippians with developmental disabilities are on the waitlist today.

Have your own medical story to tell? Contact Anna Wolfe at 601-961-7326 or awolfe@gannett.com. Follow her on Twitter.

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