This week, I’m honored to have my first guest blogger ever, Mary McManus, MSW, the mother of 32 year-old Ruth Anne who has PANS. This story is an important one for raising awareness of PANS in adults because so many others, like Ruth Anne, have spent years pursuing psychiatric interventions to little avail, unaware they have a treatable medical condition…

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The Missing Piece of the Puzzle

Mary McManus, MSW 

What is more challenging than watching your adult daughter’s life fall apart before your very eyes? It was having been a social worker for 25 years and not being able to help her using “traditional methods” of intervention.

When our daughter returned home from a successful academic career at Middle Tennessee State University, her ability to keep it together, as she had through her Bachelor’s Degree, began to unravel. There were yellow flags letting me know that she wasn’t functioning as one would expect a 27 year-old to function after a successful academic career, graduating with honors, having balanced work and the world of academia.

Yet my daughter was, as some would say, a “late bloomer.”  She had lost a lot of weight while away from our home in Boston and had become very dependent on us with frequent need for contact through FaceTime. She often requested airline tickets to come home to get a break from her roommates and school. 

As Steve Jobs said, “You cannot connect the dots looking forward; you can only connect them looking backwards.”

There were fits of rage, and she was reluctant to get a job. She became obsessed with yoga, and one yoga teacher in particular. When she wasn’t filled with rage spewing venom at me, with phrases like, “You are a killer of souls,” she was filled with terror and a belief that “they” were going to put a barcode chip in her. There were several stressors that seemed to precipitate this behavior, and I thought perhaps she was suffering from Post Traumatic Stress Disorder. My husband and I did everything we could to get her professional help, but she refused. She said she would get a job, save up enough money to move out, and be on her own. She secured a retail job, rented a room in a house not far from where we live, and hired movers.

I kept encouraging her to please get professional help, and she refused. 

In April of 2016, she called me asking if we could meet. It was time to say goodbye.

I called the BEST Team, which is a crisis team here in Massachusetts. They gave me suggestions for how we could get her psychiatric help. Thus began a series of hospitalizations, stays at Crisis Stabilization Units, med trials, and diagnoses. She moved back in with us. There was a period of ten months in which I provided 24/7 care in our home while she attended a Day Treatment Program. We trained for and ran the Bermuda Half Marathon together in January of 2017, and right after we returned home, life began to unravel again for her and for us as a family.

There were times when we couldn’t speak to her lest we set off a rage. My husband and I decided we would live our lives as best we could, allowing the “professionals” to take over. She was a client of the Department of Mental Health and was being followed by the Police Department’s social worker because of the calls we had made to 911 and the need for a Section 12 on several occasions. 

We looked for alternative housing in a supportive living environment. Fortunately, there were none to be found. Despite the hell we were all living through, having our daughter on the track of a psychiatric patient would have been disaster.

We were on a wild roller coaster ride where, at times, our daughter seemed so rational, capable and competent. Nothing made sense from a psychiatric diagnostic perspective. 

I would periodically get involved with her care and kept urging the teams responsible for her care to please consider possible underlying conditions to explain her symptoms. To no avail, I pleaded with her to stay off of the internet because it triggered hallucinations as she was drawn into a world of yoga with recommendations for food restriction and fasting and religiosity.

I did not know her brain was on fire!

As a psychiatric social worker I did know that she was not schizophrenic and that she presented with what we used to call “an organic feel,” meaning that there was some organic brain syndrome going on.

But what was it?

Occupational Therapists suggested jigsaw puzzles as an activity to replace our daughter’s hallucination- and psychosis-inducing compulsion to go online. Oh, the irony that somehow we were missing the last piece of the puzzle for several of our puzzles. We found one puzzle piece in our car! The Universe was sending us a message.

In February of 2018, our once bright, beautiful, kind and gentle daughter took an overdose of pills declaring she could no longer stand the pain of being alive.

The inpatient social worker referred her to Harvard Vanguard for a new primary care provider and a psychiatrist along with a Partial Hospitalization Program. Conversations with our daughter focused on wishing there was hospice care for patients with psychiatric conditions for whom there was no hope.

She would present at Emergency Rooms or Urgent Care with physical pain and complaints of an ear infection and symptoms of UTI’s, but because of her suicidal ideation and wanting to “throw in the towel,” they would Section 12 her and not do anything to fully work up any physical complaints. They believed that they were part of her psychiatric condition. We were drawn into a vortex of crisis after crisis, and neither I nor her PCP or psychiatrist could keep up with what was happening. Nobody had heard about or considered PANS. One inpatient doctor even took her off of Zoloft believing that was the cause of the visual hallucinations! 

We needed a miracle! My friends prayed. We prayed. We prayed for relief and release from our daughter’s suffering. We didn’t want her to die but she had no quality of life. She was hospitalized 14 times from February of 2018 to August of 2019.

One of my friends posted on Facebook that he was so excited to have scored the music for the movie, My Kid Is Not Crazy, a movie about search for hope in the face of misdiagnoses. Another one of my friends posted asking for prayers for their 6 year-old daughter. We messaged each other. They had been incredibly supportive during the past three years, and my heart broke that they were going through a similar experience with their daughter.  She was diagnosed with PANS and being treated at Mass. General Hospital. We shared prayers and tears. 

I stopped dead in my tracks. 

I thought back to a moment in our daughter’s childhood after several bouts of strep, chronic ear infections, bladder infections, and after the surgery to remove her adenoids and place tubes in her ears. She was only 6 years old. Mrs. Crocetti, her kindergarten teacher, and the other two teachers in the Kindergarten wing at her school approached me when I as picking up our daughter and her twin brother.

 “What happened to Ruth Anne?” they asked. I was startled to say the least. They commented on how her behavior changed from a bright, sweet, kind and attentive child to one who would “space out” and have a hard time paying attention. We attributed it to the trauma of the surgery and having a hearing loss that fortunately was restored after a perforated eardrum.

In third grade, our daughter’s teacher cried at the Parent-Teacher Conference. She took out a sample of her work in yellow crayon with writing all over the page. It was barely legible. She referred her for testing and Ruth Anne was put on a 504 Ed Plan. We provided her with a lot of in-home support and hired a tutor. Mistakenly, we accepted the recommendation that she go on Ritalin to help with her ADHD, but you don’t know what you don’t know. 

Going into adolescence, she had more strep infections and a bout of pneumonia. She was diagnosed with Acid Reflux, taken off Ritalin and began food restriction. She had an angel of a high school teacher who provided her with one-on-one tutoring and made sure she graduated from high school despite the absences. She also suggested OT, which helped Ruth Anne with fine motor skills, organization, and experiencing some sense of mastery of tasks.

In mid-August of this year, I called the inpatient unit at St .Elizabeth’s Hospital, where my daughter had been admitted after telling them she could not live like this anymore. She was going to leave everything behind and go to a better place. She was going to take all of her pills. 

I told them to take her off her current med regimen and get her back on the combination which had worked best for her during the ten-month period of no hospitalizations. I told them they MUST do a urine test. I did not quite have the courage yet to put forth my diagnosis of PANS, but I did tell Ruth Anne. The inpatient team did taper her off of the meds that were toxic to her and re-instituted the med regimen I suggested, but what followed was a call from the social worker demanding a family meeting. They were suspect of us as parents and accused us of confusing Ruth Anne and causing these frequent hospitalizations. They also demanded that the Department of Mental Health get involved again. I thought I would have to be restrained. 

I turned to her primary care provider who was caring and compassionate as I laid everything out for him. He wasn’t sure if there was a need for long-term antibiotics given the negative cultures and that she had yet to complete a full course of high doses of an antibiotic, but he would certainly repeat her urine test after discharge. The inpatient unit discharged her before the results of the culture came back and before her meds were in therapeutic range. I called the Quality Assurance Team, but they never followed up with me.

Her psychiatrist was open to treating her symptoms and following my lead with adjusting psychiatric meds. Her primary care physician did as he promised, and her urine was loaded with infection even though the culture came back negative. He treated her with 500 mg ciprofloxacin twice a day for seven days. Following the med regimen of my friends’ daughter, I put Ruth Anne on ibuprofen. Her primary also referred Ruth Anne to a urogynecologist to address her chronic bladder pain. She was diagnosed with chronic interstitial cystitis and given a wealth of patient information about the condition along with ways to minimize inflammation.

Little by little, Ruth Anne returned to the woman we know and love.

She felt empowered by her diagnosis and the new med regimen that made life worth living again.  She returned to volunteering with Boston Cares, where she volunteered on and off since 2007, which offers various volunteering opportunities throughout Boston. We discovered a new volunteer opportunity at our local animal hospital that is providing training that could lead to a job as a Vet Assistant. She is on SSDI with a psychiatric diagnosis, so she does not have the pressure to return to work. I provide a lot of support and cuing to her throughout the day as needed, especially when the urge overwhelms her to go on the internet. We encourage as much independence as PANS allows. We stripped down her phone, put on parental controls and lock down our computers with passwords.

I accompanied her to her appointment with her psychiatrist who agrees with the PANS diagnosis and was heartened by her improvement but aware of how it “takes a village” to help her recover. He said that he was baffled by her presentation knowing that she did not fit any diagnostic category, but unsure how he could help until I came up with the diagnosis. He treated me with professional courtesy and made sure that referrals for a therapist and OT went through the Harvard Vanguard System.

Ruth Anne’s current med regimen is:

• Abilify 30 mg to keep hallucinations at bay
• Zoloft 200 mg as a mood stabilizer and to help with anxiety
• Ibuprofen 400 mg 3X/day
• Vistaril 25 mg taken in the morning and 50 mg at 3:30 for anxiety

She works with a chiropractor, therapist, and OT once a week and her psychiatrist once a month.

She does daily meditation using Dr. David Hamilton’s visualizations (www.drdavidhamilton.com/howtovisualize), the soundtrack from Heal Documentary, Dr. Bernie Siegel’s meditations (www.drberniesiegelmd.com), or Dr. Joe Dispenza’s Blessings of the Energy Centers II.

She is reading How Your Mind Can Heal Your Body 10th anniversary edition by Dr. David Hamilton and Bernie Siegel’s 365 Prescriptions for the Soul.

She does exercises from The Anxiety Worry Workbook by Dr. Beck and a Brain Exercise book recommended by the inpatient OT developed for athletes with concussion brain syndrome.

We subscribe to The Boston Globe so she has access to current events without going on the internet. We also do the Sudoku and Jumble together to help exercise her brain.

She found a wonderful AA group that she attends weekly. The members have embraced her and understand OCD and her addiction to the internet.

Before the diagnosis of PANS, we had no hope for recovery or that Ruth Anne would ever experience a good quality of life. We fired the Department of Mental Health, the police department social worker, and a previous therapist who was enabling Ruth Anne’s patterns of keeping secrets from us and going on the internet. We’ve been blessed to find caring, compassionate and competent professionals. Every day brings its challenges and joys. We embrace and celebrate moments of joy and dig deep to make it through the challenging moments.

I asked Ruth Anne how she feels about having lost five years of her life to misdiagnoses and hospitalizations. She smiled and said, “I can’t get that time back, but I’m planning to make up for it now!” She is slowly returning to her passion of running. She works so hard every day to reclaim her life, mind, body and soul, and to be, as she likes to say, “a loving member of the community.”

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