Mystery illness fells young man
School had just started for the year and Cole Haakana
could hardly sit still in his fifth-grade classroom. Today, he was going to a friend's house and they were going to walk into town and get ice cream.
But when school let out later that day and the two boys walked the winding neighborhood roads that follow Lake Minnetonka's shoreline, Cole needed to stop and rest. The 10-year-old boy—who spent nearly all his free time riding his BMX bike, fishing, and playing baseball—suddenly felt weak.
He was wracked by a cough so scary that his friend's mother called Cole's mom.
Carrie Halvorson wasn't worried at first. It was September 2005, the kids were back in school, and Cole had probably just picked up some type of bug. They'd wait it out over the weekend.
Fall was the time of year that Halvorson, then a vice president at Sunrise International Leasing, could relax and watch the neighborhood prepare itself for winter. It had been a hectic summer. The family had just finished remodeling their Shorewood home overlooking the lake and celebrated with a trip to Yellowstone National Park. It was time to go back to work.
But when Monday came around and the cough had turned into a bark, Cole's father brought him to the doctor. The M.D. diagnosed him with "croup-like" symptoms and prescribed Prednisone, a steroid-based asthma medication.
The next day, Cole awoke screaming, thinking his throat was closing. Soon after, his parents took him back to the ER. Cole was admitted on the spot. For the next five days, he was treated at the hospital for breathing difficulties and pneumonia. He left the hospital with instructions to continue antibiotics and two steroid-based asthma treatments, more Prednisone and a prescription for Advair.
Cole returned to school, but didn't seem like himself. The lifelong B-student was doing things that just didn't match the responsible, hard-working kid his parents say they raised. Cole and some friends left an obscene message on their gym teacher's answering machine, and he got detention after stuffing a lunchroom baked potato down the toilet.
Cole had gained some 20 pounds since starting the steroids and was getting teased; his parents chalked his behavior change up to the stress of starting middle school. It wasn't until Cole starting getting violent that they knew it was time to take him back to the doctor.
Just days after his 11th birthday, Cole was prescribed antidepressants. It was December, Christmas was right around the corner, and Halvorson was sick with anguish. Cole told his doctor he wanted to die. He said he thought about hanging himself and stabbing himself with scissors. The M.D. referred Cole to a psychiatrist.
"He was 11," Halvorson says, swallowing back tears. "We didn't even know he knew what suicide was."
The depression had taken a physical toll on Cole. Besides the weight gain, the life had drained from his normally joyful, energetic face. Cole's smile was gone and his lips seemed stuck in a strange, twisted frown.
One day, Cole stood in front of his mother in their home's spacious kitchen and stared at her with an intense gaze unlike anything she had ever seen before. "His face didn't look like himself at all," Halvorson recalls. "In his eyes, he just looked like he was gone. It was scary."
Without saying anything, Cole abruptly turned around and left to go outside. It was January, you could see your breath in the cold winter air, and Cole didn't even stop to put on his coat.
"I knew I had to follow him to see what was going on," Halvorson remembers.
No time to grab a jacket of her own, the mother slipped on her shoes and ran after her son. She found him in the garage standing on a white bucket propped on the cold cement floor. The boy had strung a rope over the rafters and was adjusting a noose around his neck.
"I screamed, 'Oh my God! Cole! What are you doing?' And I ran over there and grabbed him. And hugged him. Something was really wrong."
Collapsing into his mother's arms, Cole sobbed as she gently removed the rope from his neck. "He said he didn't know what he was doing, that he didn't know what was going on," Halvorson recalls.
Later that night Cole told his parents that he was hearing voices. Inside his head, God and the devil were fighting for his attention, telling him to do things. The devil had told him to hang himself.
In a matter of months, his parents and doctors watched as Cole regressed from a healthy 11-year-old into a big kid with the mentality of a four-year-old. Cole forgot how to ride his bike. He mumbled nonsense, and broke into psychotic rages, screaming with terror. His parents bought Play-Doh and blocks that kept him captivated for the better part of a day. Sometimes Cole spun around in circles for hours.
When a neurology report came back in February 2006 with no significant medical findings, doctors began to suspect that Cole suffered from a rare form of steroid-induced psychosis. It was a stretch, but what else could explain Cole's befuddling behavior? By April, when it became evident Cole wasn't responding to anti-psychotic medication and was becoming physically sick with frequent nosebleeds, headaches, and night sweats, his psychiatrist gave up. The next month, Cole was referred to the Mayo Clinic with urgent need of admission.
"We were so happy," Halvorson says. "We were going to the Mayo. The Mayo. They had to be able to do something. We told Cole we were taking him to the best place in the world."
IN ORDER TO GET Cole into treatment sooner, Halvorson had her son admitted into the Mayo's pediatric psychology ward. Upon seeing that Cole would be in the same hall as depressed teens dealing with suicide and eating disorders, Halvorson almost left the hospital. The lockdown rules and random checks for razor blades were horrifying for the mother and her son. Cole couldn't even wear hooded sweatshirts because of the drawstring around the neck.
But doctors convinced them to stay. They even altered the rules, allowing him to come and go with his parents, just so the family felt more comfortable.
And if there was an answer to Cole's mysterious ailment, it was likely to be found here in Rochester. The Mayo Clinic is one of the largest hospitals in the world, with doctors from every medical specialty. More than 3,300 physicians, scientists, and researchers work at three sites, treating some half a million people each year.
On the second day of Cole's stay in May 2006, a team of doctors led by Dr. Nancy L. Kuntz came into Cole's room looking panicked, Halvorson recollects. They had reviewed his earlier neurology work and were shocked that someone had told the family that Cole's brain was fine.
"'Who told you Cole checked clear from neurology? I thought you said the tests came back normal. This isn't normal,'" Halvorson remembers Kuntz saying.
Doctors at the clinic were quick to doubt earlier assumptions that Cole suffered from steroid-induced psychosis and instead focused on the hypothesis that his symptoms were caused by a compromised immune system from too high a dose of steroids, allowing an infection to spread to the brain.
When he was sick in 2005, hospitalized for his breathing and pneumonia, Cole was prescribed 60 mg of Prednisone daily, totaling 14 days on the drug in a 17-day period, Halvorson told them. "We were never told to wean him off the drug."
Cole reminded the Mayo doctors of a previous case involving a young girl who had been brought to the hospital years earlier, Halvorson recalls. Like Cole, she presented psychological symptoms, but it turned out she was suffering from untreated meningitis, an infection in the brain that can manifest a wide range of symptoms, including fever, headache, and mental confusion.
Cole was discharged from the Mayo one week later. He was told to follow up soon with Kuntz, a pediatric neurologist at the clinic. By then, his family was informed, the results of a battery of tests should be in.
• • • • •
COLE'S HEALTH STARTED TO DETERIORATE almost as soon as he returned home. After a trip to the ER when Cole's breathing worsened, Halvorson followed the instructions in Cole's prescribed asthma action plan and gave him Prednisone.
"I was so nervous, but it was like a miracle, like he woke up from a coma. He just woke back up after five months of being away," Halvorson remembers.
But when she called Kuntz with the good news, the doctor said there was nothing more she could do. The tests they'd run had failed to identify anything wrong with Cole. In a medical note, the doctor wrote that despite Halvorson's concerns that Cole "cannot focus, concentrate and is having deterioration in his mental facilities, I am not able to provide a medical or neurological explanation for that."
Halvorson couldn't believe it. Even Cole's psychiatrist at the Mayo, Dr. Lloyd Wells, thought Cole had a medical problem. She turned to the Mayo's division of patient affairs and demanded that a new doctor review Cole's case. After weeks of waiting, Halvorson was told that the head of pediatrics, Dr. Philip Fischer, would meet with her.
Halvorson cried as she and her husband listened to Fischer, a specialist in pediatric tropical disease, gently tell them that there was nothing more that could be done. Cole's problems were likely psychological in nature, Fischer wrote in a medical note. Because there was no clear diagnosis, Halvorson would have to stop giving Cole the Prednisone.
Halvorson was helpless. Suddenly, Cole had no doctor and no medication. She called the Mayo Clinic 72 times that month, demanding medical records and an appointment with a new physician, but says she hardly received any calls back.
Paranoia set in: Why on earth didn't anybody want to treat her son? Did the family do something to offend the Mayo? Did she ask too many questions?
Halvorson decided to start taping everything doctors told her regarding Cole's care. She started to document everything, saving email conversations, demanding medical records, and typing phone transcripts.
On June 16, Halvorson fired off an email and faxed a letter to the CEOs at Mayo, copying it to the Attorney General's Office. She argued that the nation's premier medical establishment, the Mayo Clinic, had abandoned her son. She believed that if she expressed her concern to the appropriate people, somebody would do something to help.
"That's what I thought would happen; I didn't realize it was the opposite and I made the situation worse."
• • • • •
AT 5:05 P.M. THAT SAME FRIDAY, Fischer filed another medical record, reiterating that Mayo medical staff had told the family numerous times that there was "no evidence of an active organic/medical problem that would require treatment.... She told our nurse that she disagreed with our diagnostic conclusions and would keep trying other physicians...."
By Monday, Dr. Lara Jaradat, who was doing her residency at the Mayo and whom Halvorson says she only met once, filed a medical report noting that Cole's mother may be suffering from Munchausen's Syndrome by Proxy, a delusional disorder in which a person inflicts illness on another to get attention. Jaradat wrote that she would be reporting Halvorson to Child Protective Services for giving her son steroids without medical advice and for doctor shopping. (Jaradat left the Mayo soon after and did not return calls seeking comment.)
On July 14, 2006, Child Protective Services completed an investigation of the family. CPS dismissed the case, finding no maltreatment.
"It sounds like you've been getting different messages and you're just trying to leave no stone unturned and who wouldn't, you know?" said a county investigator who contacted Halvorson to tell her the charges were dropped.
But that brought little relief. Cole needed help. His physical symptoms were intensifying. He had developed lesions all over his skin. Cole's rage had become uncontrollable. He screamed for hours at the family's home, frightened of doctors and of his own hallucinations. The 11-year-old had resigned himself to sleeping in his parents' bed.
"You couldn't describe a horror movie that would be anything like the horror coming from Cole," says Halvorson. "It was complete terror and there was nothing you could do to comfort him because you were a part of the hallucinations."
With an incomplete set of medical records and a CPS complaint against her, Halvorson had little luck finding anyone to take on Cole's case. After months of doctors discounting her son's illness, Halvorson finally secured an appointment with a pediatric rheumatologist at the University of Minnesota. It was August 2006, and as Halvorson puts it, "the red carpet was about to roll out."
• • • • •
BY THE MIDDLE OF AUGUST, Cole had cycled through a team of specialists at the University of Minnesota Children's Hospital, Fairview. Doctors were intrigued by the boy's mysterious illness—one even asked for photos of Cole's skin to share with his colleagues. Countless tests were done.
The next month, Dr. Ashish Kumar took a special interest in Cole's case. "He has had an extensive workup which so far has not confirmed a diagnosis, but does suggest systemic mastocytosis," wrote the pediatric hematologist in a medical note.
Systemic mastocytosis is a rare cell disorder that can result in symptoms like Cole's. All the tests so far suggested the disease, but a bone marrow biopsy could tell for sure, the doctor reported. In the meantime, Kumar put Cole on additional medications to relieve his symptoms.
The young doctor didn't hide his disappointment when tests discounted his working hypothesis. "This lack of mast cells in the bone marrow does not rule out the diagnosis of systemic mastocytosis," wrote Kumar a week later. "[Cole] may have mast cells in other organs such as his liver or spleen that we cannot see at this time. The rest of his history does fit with systemic mastocytosis although his neuropsychiatric symptoms are more severe than have been previously described."
Halvorson took Cole to Dr. Ralph Shapiro, the director of the Midwest Immunology Clinic. Tests Shapiro ran indicated an "autoimmune encephalopathic picture" in Cole.
Fresh out of training from his residency at the Mayo Clinic, Kumar responded favorably to Shapiro's findings. In a medical note dated October 5, 2006, he wrote, "I agree with Dr. Shapiro's statement that Cole's illness is most likely an immune dysregulation. This likely led to an autoimmune process attacking portions of his brain causing the neurological and psychiatric symptoms.... This immune dysregulation was likely started by some infection, likely his pneumonia from last September."
The antibodies that usually fight off infection had gone haywire in Cole's brain, Kumar explained in a taped conversation with Halvorson. Cole's immune system had become overactive, continuing to fight off an old infection that was no longer a threat. "Overactive doesn't mean it's protecting Cole against infections more than it usually does," the doctor said. "No, it's actually causing more problems."
No one could finalize a diagnosis for Cole, but everyone seemed to agree that something was medically wrong with him. Kumar and Shapiro continued to search for a cause, telling Halvorson to take Cole to other U of M specialists to investigate a possible throat disorder as well as parasitic and fungal infections.
Both doctors prescribed Cole more drugs, Kumar giving him Prednisone while Shapiro recommended antibiotics. Later, Kumar suggested an even more aggressive therapy—intravenous steroids—but Halvorson was reluctant and wanted to stick with the Prednisone.
By mid-October, Halvorson and her husband met Dr. Edward Kaplan, an infectious disease doctor at the U of M whom Kumar had recommended. The nervous parents were immediately calmed by the doctor's confident voice. Finally, someone was taking charge of Cole's care.
Kumar, Halvorson recalls, had seemed so young and inexperienced, jumping from diagnosis to diagnosis. Kaplan, on the other hand, was a much older man with an impressive résumé. He promised to consult with colleagues at Johns Hopkins and Yale about Cole's illness. He would be the "informed traffic policeman" in Cole's care, the go-between for the parents and the medical establishment.
"I will promise you that we will help as much as is humanly possible," Kaplan told the family in a taped conversation.
• • • • •
ALMOST EXACTLY ONE MONTH LATER, Halvorson received word that she was again being investigated by Child Protective Services. This time, CPS was concerned about the welfare of both Cole and his younger sister, court documents maintained. The complaint accused the mother of "doctor shopping," taking Cole from facility to facility, forever looking for an illness that simply wasn't there.
"...Cole has had multiple evaluations and been seen at the Cleveland Clinic, the Mayo Clinic, and by various specialists and sub specialists at the University of Minnesota and in the metro area," court documents note, summarizing the complaint. "...[N]one of the medical practitioners have identified a disease, syndrome, or infection to account for Cole's difficulties, but the mother appears to be becoming more extreme in her efforts to prove that there is medical illness and not a behavior disorder.... [T]he mother has become convinced that she, her children, and her husband are all suffering from a parasitic infection."
When CPS investigators showed up at her door in December, Halvorson was at a loss for words. She kept telling the investigators to talk to Dr. Kumar; surely he could provide CPS with documentation of the doctors' medical concerns.
It was only after she began fighting the case that Halvorson learned it was Kumar who had filed the complaint in the first place.
"We thought he was our friend. We thought he was concerned for and cared about Cole," Halvorson says, remembering the day she learned of Kumar's betrayal. "All of it was like a never-ending movie, like a fictional movie you could never think up. Constantly these unbelievable things were happening."
Kumar suggested the children be taken from the home temporarily and put in a foster home where he and others would supervise their care. Cole needed to be "...removed from the chaotic environment that he is in so that he could undergo a psychological evaluation and begin behavior therapy that will allow him to live in this society again. The precise duration of the evaluation and the therapy cannot be made at this time but we might begin with a window of at least six months."
The family gave CPS what documents they had, played them recordings of Kumar expressing his own suspicion that the illness might be caused by a parasite, and provided them with the October prescriptions for the medications. But it wasn't enough to convince the agency. One month later, CPS returned a finding of "maltreatment determined." The family was instructed to go to court to make their case for keeping custody of the kids.
Telling her children that she might lose them was the hardest part for Halvorson. "Can you imagine telling your kid that when he's sick? They were devastated."
• • • • •
IN ORDER TO PREPARE her defense for the court hearing, Halvorson was granted access to all her son's medical records. She soon received a package from the county with medical documents from the Mayo that Halvorson had never seen before.
Dr. Shapiro confided to Halvorson that he didn't suspect her of Munchausen and that internal hospital politics might be to blame. "I understand how it goes," Shapiro said in a taped conversation. "...That's why I left the university; I didn't like to get caught up in all that garbage. I liked to look at what we can do and what we can't do and if we can do something, we'll do it, and if we can't, we won't." (In an interview with City Pages, Shapiro backed off his statement about hospital politics. "I don't know what happened. I don't want to judge people based on hearsay," he says. "She had a difficult time dealing with a lot of different situations, which always makes me wonder. As far as her dealings with me, I didn't have any problems with her on my end.")
When a report from a mastocytosis expert at the University of Michigan requested that Cole get an infectious disease review, the judge allowed Halvorson to get one more medical assessment. On the advice of the court, the family took Cole as far away as possible: Stanford University in California.
In April 2007, Cole and his family were admitted to the university's Lucile Packard Children's Hospital. They'd been there for just days when results from a skin test came back with a surprising result: positive for tuberculosis.
Halvorson was ecstatic. Finally, a diagnosis! With an identified disease, doctors could soon begin treatment and Cole might finally recover.
By June 20, 2007, upon assessing the findings at Stanford, the audio tapes, a January test finding Cole positive for Blastocystis hominis—a common single-cell parasite that infects the gastrointestinal tract of travelers—and documents noting that Cole had prescriptions for all the drugs he was on, the court reversed Halvorson's status to "maltreatment not determined."
"Clearly there is a political agenda in all of this," a county social worker told the family in a taped conversation. "Your son is not well and you don't know why and the people you expected to help you, you feel like they shafted you and so who else now can you trust that has the knowledge to get your son better?"
• • • • •
BACK IN MINNESOTA, Halvorson started doing what now seemed routine: brainstorming new ways to find help. On the phone, a Stanford physician told her that the skin test done on Cole in California was a false positive. They were saying that it was unlikely Cole really had TB, she remembers.
Now suspicious of everyone in the medical community, Halvorson brought Cole to a local clinic for a repeat test. Cole again tested positive for TB.
Upon receiving the news, Stanford recanted its earlier statement. Cole's initial test was indeed positive. Stanford promised to help her son.
Other tests had come back confirming a likely diagnosis of limbic encephalitis, an infection causing a swelling in the limbic portion of the brain, the area that is involved in a person's memory and other cognitive functions such as emotions and feelings. This, in addition to the TB, could explain Cole's drastic behavior changes.
According to the experts at Stanford, Cole was going to need specialist care to figure out how to balance treatment for the two conditions, to understand if the TB and the encephalitis were related, and to figure out which came first and when. Cole should be hospitalized. He should go to the Mayo.
Halvorson was shocked. There was no way she could go back there. She had no choice but to tell the Stanford doctor her story from the beginning. Much to her surprise, Stanford's response was in stark contrast to that of previous doctors and nurses. As Halvorson explained why she didn't want to go back to the Mayo, Cole's doctors seemed sympathetic.
"Your situation is not unusual," Dr. Jennifer Frankovich told Halvorson in a taped conversation. "...[I]t's horrible, absolutely horrible. Without even questioning, even for a second, I don't doubt you for a bit...you guys are just being good parents by using the system and trying to get answers and asking for more.... [W]e have proof that there's something going on and there's nothing you or your husband or your family or anyone could have done to make this happen. You know his body made it and there's no questioning that."
Halvorson told Frankovich about her letter to the Attorney General's Office. The doctor told her about "risk management."
"Unfortunately, once the word 'lawyer' or 'attorney general' or anything comes up, then suddenly everything gets dictated by the risk management group. So, it could have been the risk manager at Mayo that said, 'No, you guys are better off not seeing this child anymore,'" Frankovich said in the taped conversation. (In an interview with City Pages, Frankovich explained that she was just trying to persuade Halvorson that the Mayo wasn't out to get her. "I was just throwing ideas out there, to get her trust.")
Regrettably, litigation has changed the medical world in many ways, says Laurie Zoloth, director of the Center for Bioethics, Science, and Society at Northwestern University in Chicago, who hasn't reviewed Cole's records. Some doctors refuse certain procedures for fear of lawsuits, and the number of medical students wanting to go into the more complex specialties has declined because aspiring doctors fear the ramifications of medical mistakes and rising insurance costs.
In June of 2004, an Associated Press investigation found that some doctors were refusing to treat family members of trial lawyers or lobbyists against tort reform. That same year, there was uproar in the medical community over an online database that listed plaintiffs in medical malpractice suits. The website, DoctorsKnowUs.com, was shut down just days after a New York Times article claimed it was blacklisting patients.
Two years later, in June of 2006, the Wall Street Journal reported that an offshore website listed Florida residents who had filed medical malpractice lawsuits, allowing local doctors to screen out potentially troublesome patients.
To restore Halvorson's faith, Frankovich had a Mayo physician who didn't know anything about Cole look at his medical records.
"He felt that Cole's case was consistent with having limbic encephalitis and feels there's potential for dramatic improvement!" Frankovich eagerly explained on Halvorson's answering machine.
• • • • •
HALVORSON HAD A LOT TO THINK ABOUT, but first she had to find someone to treat her son for tuberculosis.
With the Mayo and the University of Minnesota out of the question, Halvorson went to Children's Hospital for the required therapy. In June 2007 she met Dr. William Pomputius, an infectious disease doctor assigned to Cole's care.
"He's been traveling in Mexico.... He very well could have been exposed back then," Pomputius told Halvorson. "I mean, it's not like this kid who grew up in Minnesota had never been anywhere, in which case it would be hard to explain. He's been out and about more than enough.... I'd have to say given what I've seen so far...it's much more likely a possibility of a real TB infection."
Doctors began to suspect that Cole had central nervous system tuberculosis, a form of TB that targets the brain, not the lungs as is most commonly associated with the disease. While not contagious, it is the most serious complication of TB in children and can cause devastating neurological damage and often death, according to the U.S. Centers for Disease Control.
"From what you've told me, I would treat him with the full course of TB therapy," said Dr. Gerald Mazurek, a TB expert with the CDC, who called Halvorson to discuss Cole's case. Mazurek never formally reviewed Cole's medical history, but offered to speak with his doctors on Cole's behalf. "It sounds like your son went for a relatively long period of time without treatment." (Mazurek declined to be interviewed for this story.)
Nonetheless, Pomputius later became unsure if the TB was actively causing an infection in Cole and put him on a single drug treatment. For nearly three months he treated Cole for latent tuberculosis. He based his reasoning partially on the negative results of a QuantiFERON-TB test—the same test Pomputius had earlier discounted as not being very reliable. "It's not that great of a test," he said on tape. "...You can still have active TB and still a negative QuantiFERON."
Knowing what was at stake and fearing her son could develop resistance to the drug, Halvorson turned to Pomputius's boss, Dr. Phil Kibort, the vice president and chief medical officer at the hospital. In an emotionally charged meeting, Kibort listened as the parents told their story. When they were finished, he reassured them that Pomputius wasn't denying the medication because of political reasons, but because of a genuine belief that Cole didn't need a multi-drug treatment. (Pomputius and Kibort declined requests for interviews, despite the parents' willingness to sign a release.)
"I believe you," Kibort said. "Listen, I understand you got into a cycle with that child abuse and maltreatment that it's hard to get out of.... I accept that's all fraudulent."
Kibort told the family about another clinician, Dr. Dean Tsukayama, who was a TB specialist with Hennepin County Public Health and worked primarily with refugees. If the family agreed, Tsukayama would treat Cole with the full course of anti-TB drugs.
• • • • •
FINALLY ABLE TO CATCH HER BREATH, Halvorson sat down to read. She had yet to fully go through the documents sent to her from the county. She had yet to read Cole's complete story from beginning to end. When she did, she couldn't believe what she found.
Doctors at the Mayo had suspected a brain disease all along. "Cole's history is concerning for an underlying metabolic/medical process," wrote Dr. Jayne R. Wilkinson in a May 11, 2006, medical note. Wilkinson went on to list possible encephalopathies and infectious etiologies that could be present in Cole, and suggested several more brain scans and tests, some of which Halverson claims were never done.
Another physician at Mayo, Dr. Siobhan Pittock, seemed to share Wilkinson's suspicions, noting on May 12, 2006, that it was doubtful that Cole suffered from any steroid-induced psychosis, but "it would be important to check a paraneoplastic autoantibody screen as several autoantibodies are associated with encephalopathies which can present with psychosis."
For the last two years Halvorson had been desperately trying to find someone to figure out what was wrong with her son, and it turned out doctors had been on the right path years before. All the symptoms were there: a lung nodule found at the Cleveland Clinic, the flushing of the skin, the headaches, the night sweats. Halvorson had told the doctors of the family's travel history—how could they miss the diagnosis?
The University of Minnesota claims in a written statement that it acted properly. "We're sorry the family of Cole Haakana has been through such a difficult experience. Our thoughts and concerns are with Cole and we hope for his continued recovery. Our recommendations regarding Cole were made with his and his family's best interests at heart. Our risk management team plays no role in the medical management of patients in our hospitals. Physicians and other providers make all treatment decisions in consultation with patients and family."
For its part, the Mayo Clinic refuses to discuss the case. "In this particular instance we don't have anything more to add to the story other than what the patient already has," says Mayo spokeswoman Priscilla M. Russell.
• • • • •
SINCE UNDERGOING the multi-drug treatment for suspected central nervous system tuberculosis, Cole feels like a new person. The now 13-year-old boy smiles sheepishly, tracing his foot on the floor and petting the family dog as he talks about riding his bike this summer and maybe playing on some sports teams again. Cole is glad he's getting better and hopes the doctors continue to take care of him.
Halvorson is less optimistic. While the rage and violent outbursts have subsided, Cole still suffers from amnesia and confusion. Cole's primary physician has ordered several more tests to monitor the swelling in the boy's brain, but Halvorson says she can't find anyone to interpret the results. Cole and his parents have traveled from neurologist to neurologist in the Twin Cities, but say the case is consistently turned away.
"The doctors say Cole's case is too complex, that they don't know how to deal with it, or that all tests have come back negative," she says. "Everyone else points us to neurology but we can't get a neurologist."
Even Stanford can't do anything more. Although doctors at Stanford initially thought Cole's illness might be limbic encephalitis, three follow-up tests at Mayo ruled it out, says Frankovich. "We can't treat him without a positive diagnosis."(Halvorson disputes that the additional testing was done and says she's never seen any documentation of the results.)
Out of desperation, the family is turning their private medical records over to the public in hopes that a doctor familiar with central nervous system tuberculosis will look past the politics and help their son.
Today, Halvorson has stopped working and spends 12 to 16 hours each day researching diseases and searching for medical care overseas. Boxes of medical paperwork and tapes clutter a corner breakfast nook in her half-million-dollar home. The family has cashed in their 401k and is preparing to sell a summer lot they own in Spooner. "The next thing is the house, but what do you do? Money doesn't matter. This has never been about money. We'd give everything away and live in a trailer if this could stop," Halvorson says. "It's like our son is drowning and people are just standing around on the shoreline watching, and so are we, but our hands our tied and nobody else will help."
A Note on Sourcing:
All of the doctors named in this piece were notified that City Pages would be using taped conversations they had with the Halvorson-Haakana family and were given the opportunity to comment. In all cases, the family was willing to sign release forms allowing medical staff to discuss Cole's case publicly. Unless otherwise noted, the doctors either did not return our phone calls requesting interviews or they declined to comment. The family provided the recordings and medical documents used in this article to City Pages.
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