Read this amazing story about a family trying to make the right choice between conventional medicine and alternative methods to help their daughter diagnosed with schizophrenia live a normal life.
Crystal Kelley felt like she’d been sucker punched.
Alone in an unfamiliar city, the 48-year-old Overland Park woman closed her eyes in her parked rental car and began to cry. This couldn’t be happening. Not after all she’d been through.
But by all indications, she and her 28-year-old mentally ill daughter, Caresa Vance, had flown a thousand miles from Kansas City to Phoenix for nothing. They made the trip after a social worker assured them that Vance could transfer from Osawatomie State Hospital to the state hospital in Arizona — only to be turned away.
It was supposed to be Vance’s happy ending, the first step toward alternative treatment that held out hope for a full recovery from schizophrenia.
Now that was in question.
“Mom!” her panicked daughter blubbered. “I can’t go back to Osawatomie. I’ll kill myself!”
“You’re not going back,” Kelley said, resolutely.
Brave words. But Kelley knew if her daughter returned to Kansas, she’d have to go back.
Kelley couldn’t let that happen. Still, she didn’t know a soul in Phoenix. And while Vance wasn’t hallucinating at the moment, it was only a matter of time before the witches’ brew of psychotropic drugs swirling in her brain again would cause her to hear voices and see demons. Doctors meant well. They just didn’t realize that the drugs that had helped countless other schizophrenics only made Kelley’s daughter worse.
Kelley put her arm around her shaking daughter.
“My God,” she thought. “What am I going to do now?”
In the wake of mass shootings come louder calls for better mental health care. But there are no easy answers. And when common solutions backfire, looking for help can be lonely, exhausting and expensive.
A former Marine gunnery sergeant for 21 years, Kelley was anything but weak. But even she had her limits. Raising a daughter with schizophrenia had taken everything she had.
Too often she felt overwhelmed by a problem that didn’t seem to have an answer. The medical community disagrees on what approach is best. The majority, the traditionalists, favor medications and often see alternative methods such as special diets, megavitamin therapy and removing heavy metals from the body as quackery.
Alternative practitioners say traditional doctors are too quick to prescribe drugs and need to open their minds to other methods. Those do work and should be covered by insurance, they say.
When Vance was young, her problems were minor — wheezing, coughing, ear infections, food allergies, constant runny nose.
Then things got worse. In middle school she became paranoid and began misbehaving. School officials insisted she be evaluated and possibly be put on strong medications.
Kelley resisted. She never felt comfortable giving her daughter drugs. But when the school got an injunction, she had no choice. Doctors diagnosed Vance with attention deficit hyperactivity disorder and put her on Ritalin, a depressant. After she became severely depressed, they added Wellbutrin, an anti-depressant.
Kelley hoped for the best. But months into the treatment she couldn’t help feeling the medications were making her daughter worse. But who was she to argue with doctors? They assured her that they were following standard medical procedure and that Vance would be far worse without the drugs.
It’s a familiar problem for families of the mentally ill. Rick Cagan, executive director of the Kansas chapter of the National Alliance on Mental Illness (NAMI), said mental illness is not a one-size-fits-all problem.
“Quite often folks who are living with serious mental illnesses such as schizophrenia benefit from taking psychotropic medications,” Cagan said. “Having said that, NAMI does not endorse any one particular therapeutic intervention. … What works for you may not work for me. Everybody has to weigh the costs and benefits. (But) there are many cases where individuals are walking around who are taking way too much medication where providers are not paying close enough attention to the debilitating side effects.”
Kelley saw those side effects. Whenever her daughter took psychotropic medications — especially at high levels — she grew increasingly psychotic and paranoid. She stopped eating and wound up in a hospital at 98 pounds. After doctors added antipsychotic medications to her growing list of pills, the teen began talking nonstop and having paranoid delusions. She convinced herself that severely disabled people were doing inappropriate things to her.
“He’s touching me!” she’d say. “Did you see that?”
A roller coaster of other medications followed, but never any improvement. As the years passed, Kelley and her husband, Michael, looked on helplessly as they saw Vance balloon to nearly 300 pounds, go in and out of hospitals and slip farther and farther away from them.
That changed in 2008. At a party, Kelley met Karan Baucom, a doctor and restorative medicine specialist who founded the Baucom Institute in Overland Park. Baucom urged Kelley to try alternative treatments.
“I told her if I were her I would have her daughter tested for food allergies and get her neurotransmitters measured,” Baucom said.
Kelley never knew there were options for treating schizophrenia. It renewed her hope.
After researching alternatives she found Health Recovery, a Minneapolis treatment center that offered a six-week program. Only one problem: It cost $15,000.
Kelley didn’t care. She said a prayer, got a loan and signed Vance up.
Health Recovery’s founder, Joan Mathews-Larson, has a doctorate in nutrition and uses “orthomolecular” medicine to help her patients. Nobel Prize winner Linus Pauling coined the term to mean “the right molecules in the right amounts.”
Among other treatments, orthomolecular practitioners use high doses of vitamins and supplements to help balance brain biochemistry. Some traditional doctors consider it medical malarky and cite studies that show that giving some food supplements in high doses can be dangerous.
But, says Mathews-Larson, “The idea of just writing prescriptions when you have no idea what is underlying the symptoms is crazy. Rather than using foreign chemicals to fix the brain, we try to identify what’s missing or needed. And we found a lot of things.”
Tests revealed high levels of mercury, histamine and other substances in Vance’s brain.
Histamine fires the brain’s neurotransmitters.
“If you have abnormal amounts of histamine in the brain it’s like the Fourth of July,” Mathews-Larson said. “It’s hard to stop your mind from racing, and it’s hard to sleep.”
Various treatments countered severe allergies, detoxified Vance’s brain and restored its biochemical balance, Mathews-Larson said. High levels of vitamins C and B, given through IVs, supported her immune system, boosted her energy and helped flush out the effects of the psychotropic drugs. Organic vegetables, protein shakes, fresh air and regular exercise became daily habits.
Kelley, who rented an apartment in Minneapolis during Vance’s treatment, didn’t see any significant changes in her daughter in the first two weeks.
Then, in the third week …
“The voices are gone!” her daughter announced one day.
Other things were back — joy, dreams, determination. Her weight dropped from 293 to 250.
“Something’s happening,” Kelley told her husband. “This girl’s got energy galore!”
When Michael Kelley saw the new Caresa he shook his head.
“This is nothing short of a miracle,” he said.
Vance wrote a testimony for her church titled “Miracle Wall” that described her recovery.
Back home Vance continued natural treatments with several local doctors. Adam Boender, a Leawood chiropractor, treated her for a systemic Candida yeast infection and several other conditions. Proper nutrition and exercise helped her continue to lose weight.
After more improvement, she shared her story at one of Boender’s monthly dinners with patients.
“She stood in front of 60 people and read her testimony,” Boender said. “Half the room was in tears.”
Kelley couldn’t wait to move Vance to a residential treatment program in Sedona, Ariz., to try to make the improvements permanent. Finally, everything seemed to be falling into place.
Until it fell apart.
To this day Kelley doesn’t know what happened.
In May she and Michael left for a 10-day trip to Everett, Wash., to visit their son, Emerson, who was serving in the Navy. It was a “Tiger Cruise,” a rare opportunity to sail with him aboard his ship. Normally they wouldn’t have left home. But Vance was doing so well. Kelley left money and detailed daily instructions for Vance and workers from Johnson County Mental Health, who came regularly to check up on her.
Everything should have been fine.
Mental health workers said Vance went downhill rapidly. Seeing no other option, authorities moved her to a local hospital. Doctors put Vance back on high doses of antipsychotic drugs — the same drugs the treatment center worked hard to reduce.
Vance began spiraling out of control again.
“She said demons were running around in her apartment and that the people upstairs were coming through her walls (and) threatening to kill her,” Kelley said. “It was horrible!”
After several days Vance returned home. Kelley tried to get her back on her natural regimen, but her condition grew so bad Kelley had to rush her back to the emergency room.
Vance began throwing things at people before being forcibly subdued.
On July 17, authorities determined she was a danger to her herself and others, and committed her to Osawatomie.
Vance became frustrated with doctors who rarely listened when she explained that antipsychotic medications hurt her daughter.
Osawatomie officials declined to comment on the case.
But Barry Liskow, vice chairman of the department of psychiatry at the University of Kansas Medical Center, said while antipsychotic medications are very helpful, they’re not perfect.
Studies show that 70 percent of patients are helped by the drugs, while 30 percent don’t get better or could be made worse by serious side effects.
“These medications don’t cure schizophrenia, they help control the intensity of the symptoms, including hallucinations, delusions and sometimes inappropriate, aggressive or unusual behaviors,” he said. “You can’t use them casually, and you can get into problems with them. But if used properly they are very helpful. They have given large number of patients with schizophrenia the ability to function more normally in the community, rather than having to spend their lives in mental hospitals.”
But Vance was miserable. The miracle in Minnesota seemed light years away. Fearing her daughter would be trapped there forever, a desperate Kelley mounted a campaign to get Vance out of Osawatomie.
She wrote letters and handed out fliers on the Country Club Plaza and elsewhere. She called the Kansas chapter of NAMI and a Johnson County public defender.
Months went by. Then, after meetings and pressure from the Kansas governor’s office, hospital officials agreed to look at Vance’s treatment records from Minnesota and work with Kelley.
“They told me if I found another hospital they would be willing to transfer her,” she said.
Later, a social worker at the hospital even told Kelley she had arranged it so Vance could be transferred to the state hospital in Arizona. Once established as an Arizona resident, Vance could move to the alternative center in Sedona when she was stable.
Kelley would have loved to have kept Vance closer to home. But neither Kansas nor Missouri had an in-patient center that offered the kind of alternative diet and megavitamin therapy that had helped her daughter before.
The social worker gave her a contact name and directions and even helped her book a flight. When the big day came, an excited Kelley flew with Vance to Phoenix. But when she tried to put Vance in the state hospital, a receptionist gave her the bad news.
“We can’t transfer her,” she said. “She’d have to be committed.”
It was a Catch-22. Vance could only be committed if she was a resident of Arizona. But in her present state she could only be a resident of Arizona if she was committed.
Alone in an unfamiliar city, Kelley walked back to her rental car and began to cry.
“My God,” she thought. “What am I going to do now?”
With nothing to lose, she called the Alternative to Meds Center 100 miles away in Sedona and pleaded her case.
Steve Woodring, an intake specialist, answered the phone.
“Get a place to stay tonight, then bring her in tomorrow and we’ll see if we can put her in the program,” he said.
It was the answer to her prayers.
“Oh, thank you!” she said.
Kelley drove Vance to the center the next morning. It soon became clear her daughter couldn’t stay. Still deeply medicated and in psychosis, she had both suicidal and homicidal thoughts. The center arranged for her to be put in a private psychiatric hospital in Phoenix that resumed her natural treatments, combined with very low doses of psychotropic medications, until she improved.
Soon, she was stable enough to return to Sedona.
Today, Kelley said, Vance is back again. She is happy and no longer hearing voices.
But at $20,000 a month, Vance’s treatment doesn’t come cheap. And while antipsychotic drugs are covered by her insurance, the alternative treatments are not.
Kelley does not know how many months it will take to help her daughter be completely well. But she is committed to doing whatever it takes — whatever the cost.
Since 2006 Kelley has worked for the Department of Homeland Security. Recently she got a promotion. Her husband is still looking for permanent employment after being laid off from Sprint.
A charity has been set up in Vance’s name to help pay for her care (caresashope.org). And Kelley is now writing a book called “Caresa’s Hope.”
Now both of them are dreaming of miracles again.
“Our bishop at our church tells us to speak positive,” she said. “Don’t doubt. … And so we’re saying that Caresa is going to be made whole. She is going to be able to go to school, work a job, get married, have children and drive a car.”
But mostly, Kelley hopes, Vance’s story can be an inspiration.
“People have come up to me and said, ‘We were considering medicating our child, but now we know to try something different,’?” she said.
Cagan said Kelley stands as an example to others.
“People have the right to pursue any type of treatment they think will be helpful to them,” he said. “They have to be heard by their provider and not to be dictated to based on some cookbook solutions that might have worked for everybody else. … If we have a different strategy we want to pursue, we need to speak up for ourselves. And that’s just what she did.”
Also, see this page: Drug Abuse Recovery Program