MOORHEAD — Amy Aasen says that moment in October 2010 when she got the phone call was both “surreal” and a “blur.”
“It was like one minute, I went from everything is normal and thinking about some important meetings that were happening that week, to my whole life spinning out of control,” she said.
Aasen had just returned home from a work-related dinner when she got the call from the principle of Discovery Middle School, where her daughter Dani was a sixth grader. The principal told her another parent called and said her son mentioned Dani told him she might not be around much longer. Then a second call came from another friend’s mother saying the same thing. Dani was hinting at killing herself.
Dani, now 20, says it was true.
“I had started hearing voices telling me not to live any longer,” she says. “I didn’t know the voices weren’t real.”
Dani even started giving away her prized possessions.
“I had just gotten an iPod Touch, and I gave it to my friend one day,” she says.
Amy says she and husband Dan knew they had to act right away.
“He and I made a plan to take her to Prairie (St. John’s) for a needs assessment right away the next morning. At the urging of some other knowledgeable people around me, I also scheduled an appointment with her pediatrician that day,” Amy said.
That’s when the story takes an even more surprising turn.
The Aasens told Dani’s pediatrician, Dr. David Blehm, that they while they were surprised to learn of Dani’s suicidal thoughts, they had noticed some obsessive compulsive tendencies and some repetitive moments.
“I would twitch and do weird things with my eyes,” Dani says. “My mom says the first thing she noticed was my handwriting changed. I didn’t even realize that.”
“I believed them to be the result of her being pre-teen going through lots of physical and emotional changes,” Amy says.
But Dr. Blehm thought it might be something else. He ordered a blood test for Pediatric Autoimmune Neuropsychiatric Streptococcal Associated Syndrome (PANDAS), which is the sudden appearance of obsessive compulsive disorder symptoms or tics following infection with strep throat.
Dani had just gotten over a pretty severe case of strep throat, missing school for nearly three weeks.
Dr. Jane Gaffrey, Sanford Health child psychiatry physician, says PANDAS is rare.
“The symptoms come on like a switch, and patients and families can usually give a specific date that symptoms first occurred or dramatically worsened,” she says.
That was the case for Dani, who now says she doesn’t remember having any symptoms of anxiety, including OCD symptoms, before her bout with strep throat.
“I credit Dr. Blehm for saving her because if he had not had knowledge of PANDAS symptoms and ordered the blood test for it, her psychological symptoms would have likely worsened,” Amy says.
Following the diagnosis, Dani was put on a high-dose antibiotic for several weeks, and she remained in Prairie’s partial hospitalization program as well. She went there during the day, where she’d learn coping strategies for anxiety but was able to sleep at home at night. She was also connected to a therapist, Dr. Eileen Stone, who Amy says “thankfully” remains her therapist today.
“After one month on the antibiotics, they re-ran the test and found the bacteria to be back to a normal level. She returned to school after three weeks,” Amy says.
Amy says they’ve navigated many ups and downs over the past nine years.
“As is typical, her anxiety heightens whenever things in her world feel to be out of her control. She also suffers from debilitating migraines,” Amy says.
Because of the migraines, anxiety and the frequent school absences, Dani’s guidance counselor was able to set up a more flexible way for Dani to learn, including taking online classes, which both Amy and Dani say was a great fit because the self-motivated Dani was able to work at her own pace and be in control.
“I commend Dani's high school counselor,Vanessa Boehm, for being willing to provide alternative school opportunities without having to send her to an alternative school,” Amy says. “ I think that this is critical for students who struggle to follow the traditional sequence of accumulating credits and experiences.”
Dani was able to graduate from high school early and will also graduate from college early. But it hasn’t all been easy. While the tics and suicidal thoughts are gone, she still battles anxiety symptoms, which she manages through a combination of medication and therapy and a few calendars and planners.
“I’m a control freak. I have to plan everything. If something messes up, it throws me off. I would get these planners from Target, but if I messed up a word, I couldn’t look at it. Now I have a binder, so if I mess up I can just put a new page in, but I have come a long way,” Dani says.
Dani says she has one more internship to do following graduation from Concordia this spring. She eventually wants to work in long-term care or hospital administration.
“How cool would it be to help people who are in my shoes and show them that it does get better?” Dani says.
While Amy would certainly not want to go back to that awful day when her phone rang, she does say Dani being diagnosed at such a young age has actually benefited her in that she has accumulated a wealth of coping skills.
“She still is impacted by stressful situations, but they are not debilitating anymore. She has also become an advocate for erasing the stigma around mental health issues,” she says.
Dani is very open with classmates, friends and even the public about what she’s gone through.
“PANDAS is something a lot of people don’t know about until they know someone who is diagnosed,” she says. “I think it’s important that stigma around it is reduced. My anxiety wasn’t caused by anything I did or anything anyone around me did. It was just my body reacting the way it did.”