Caregivers of children with mental illness are struggling. What can be
done to help?
by Sheilah M. Gauch
Posted September 20, 2023 | Reviewed by Devon Frye
KEY POINTS
- Caregivers’ mental health is suffering as much as their children’s.
- Multiple barriers to key systems make accessing care challenging.
- Ongoing stress can cause chronic inflammation and physical illness.
In my last two articles, I discussed chronic sorrow and the trauma caregivers of children with mental illness experience and how we might support them. As the youth mental health crisis worsens, this group gains more attention as a critical component of their children’s care.
Harvard recently published a report entitled “Caring for the Caregivers: The critical link between parent and teen mental health.” In an accompanying summary, the authors write, “It would be just as right to sound the alarm about parents’ mental health as about teens’ mental health.”1
Let’s ask ourselves why caregivers’ mental health is suffering and explore what we could do differently. When we understand the complexity of this type of caregiving (the chronic sorrow, trauma, isolation, otherness) we can team with them—not vilify them—revolutionizing how we help them, and their children.
Historical Blame
The history of how we have viewed these caregivers—and mothers specifically—as being to blame for their children’s illnesses has forever warped the lens through which we see this group. When we could not discover why mental illness occurred, from a medical standpoint, we built a foundation to try to understand what was happening. Without clear answers, many people, even apparent experts, pivoted to blaming caregivers.
Hysteria was first conceptualized around 1900 BCE as an affliction impacting women. It later evolved to describe emotional mothers who were unable to nurture their children.2 Then there were “schizophrenogenic mothers,” a term coined by Freudian analysts in the 1940s, assigning mothers, particularly domineering ones, responsibility for their children’s illness.3
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Dr. Leo Kanner, who published a landmark paper on autism in 1943, suggested that parents were a likely cause. He saw the mothers of these children as cold and distant (hence the later term “refrigerator mothers”) and the fathers inept, unaware of their child’s needs.4
Largely, these terms have been debunked by brave caregivers who demanded better for themselves and their children. Dr. Kanner publicly apologized to caregivers in the Autism Association; parents from NAMI (National Alliance on Mental Illness) demanded schizophrenia be treated as an organic illness; and hysteria was finally removed as a formal diagnosis in 1980.2,3,4
Still, the qualitative data I have from countless caregivers shows that caregiver blame persists. Caregivers report they are often given unsolicited advice by family, friends, and even strangers, detailing how they could change their behavior to alleviate their child’s suffering. Maybe they need to discipline more, maybe they need to be calmer, or maybe they are too overbearing. The message for caregivers throughout time is clear: If your child is suffering from a mental health issue, you may be to blame.
Case Managers
In addition to the weight of these historical narratives, caregivers I work with describe the experience of becoming de facto case managers of their children’s care. Tasked with finding providers, accessing insurance, and identifying appropriate therapies, they navigate complex systems of care with little to no training.
The educational, mental health, behavioral health, substance abuse, medical, and insurance systems all have different “languages.” Caregivers of children with mental illness must learn both the written, and unwritten, language of these systems to access care, often moving between multiple systems, desperately seeking answers and relief for their children.
Additional barriers make these systems virtually inaccessible to some groups. Racial disparities prove to be a formidable barrier, with African Americans, Latinx, and Asian Americans accessing care at rates 50 to 70 percent lower than white Americans.5 Cultural differences challenge access when providers miss critical nuances of a client’s background that could assist in care.6 Socioeconomic barriers are a primary reason that some people don’t access care, with research indicating many can not afford the cost of treatment or insurance doesn’t cover enough mental health services.7
The Impact of These Barriers
Even with my professional training in mental health and education, I quickly became overwhelmed caring for my children’s mental health needs (OCD, separation anxiety, behavioral dysregulation). The support my children required (supervision, appointments, etc.) led us to decide one caregiver would stay at home to ensure they received care. Down one income, we struggled to find affordable therapy. Providers who specialized in the treatment of their specific needs, and accepted insurance, were nearly impossible to find.
Adding to this stress, our children were not regaining health. Regardless of what treatment we tried, they got sicker. We now know this was because they had underlying medical causes to their mental illness (they have PANS/PANDAS) but we were unaware of this for most of their childhoods. As their illnesses worsened, we became more isolated, fearing others must see us as to blame. Blame was easy to accept; I was their mother and seemingly powerless to help them.
Acknowledging the Whole Person
Caregivers take on historical blame, barriers to care, chronic sorrow, and trauma without hesitation. Their children are who matter most; helping them often leads to forgetting to help themselves. Providers may also be so focused on the child, they miss asking about caregivers.
The Centers for Disease Control tells us that 61 percent of adults have had at least one adverse childhood experience (ACE) and 16 percent had four or more types of ACEs.8 This means many caregivers now supporting children with mental illness have previous experiences that may complicate how they support their children’s illness.
Providers who recognized me as a whole person, with life experiences that impact how I support my children, were critically important to my family. They took the time to learn the history of serious mental illness in my family and how I fought to stay healthy and avoid this fate, only to develop acute depression and anxiety in college.
These were then the professionals who could support me when the horror of being unable to stop my child’s pain, combined with first-hand knowledge of how awful mental illness is, intensified my stress reaction. If you didn’t know this, you could have mistaken my intense fight response as “challenging,” “angry,” or maybe even “hysterical.” Those who took the time to understand and care for me were who I trusted to teach me the skills to regulate my own stress response, making it easier for me to access care for my children.
Why This Matters and Why Healing Is Essential
Learning about this stress response and how to manage it is essential for caregivers’ health. Recent research details stress as an inflammatory event that causes a myriad of illnesses, confirming what trauma therapists have known for years: stress and trauma impact physical health.9Longitudinal ACE studies previously linked multiple ACEs to chronic health problems, mental illness, and substance misuse in adulthood.10
A dear friend of mine, who is a single mother of two children with mental illness, recently said to me: “I am up all night trying to get them to bed and then can’t sleep worrying about how to help them.” Her physical health has begun to suffer. With her doctor’s appointments taking up more of her time, the worry compounds.
My friend’s mental health impacts her physical health—creating a closed loop that sustains illness. How will she keep her job if she needs to miss work for both her and her children’s appointments? Her ultimate fear is that if anything happens to her, there is no one to care for her children.
Shifts in Practice
My friend deserves to heal; her children need her and she is worthy of healing. Understanding these health implications as well as the historical blame, barriers to care, chronic sorrow, and trauma must lead us to change how we view and work with this group. At the therapeutic day school I help oversee, we worked hard to do this—creating what I call our MTSS (multi-tiered system of support) for caregivers.
Our entire staff team is trained to lead with empathy, compassion, and understanding for our caregivers. We offer a trauma group to teach tools to care for themselves and seek support from each other. We offer them coaches who assist in establishing services outside of school. We developed an intensive intake process that allows clinicians to listen to caregivers, understand their experiences, and build trust critical if we hope to help them and their children.
How can we innovate, look for new ways to support this group, and avoid history repeating itself? My own children’s mental health journey has led me to wonder: Is my family history with mental illness really a family history with complicated medical issues? I have also found healing from my own depression and anxiety as an adult through learning about this medical connection. Let’s revolutionize how we view mental illness and how we help people—children and caregivers alike.
References
1. Making Caring Common. (2023). Caring for the Caregivers: The Critical Link Between Parent and Teen Mental Health https://mcc.gse.harvard.edu/reports/caring-for-the-caregivers
2. Meek, Heather. “10. Motherhood, Hysteria, and the Eighteenth-Century Woman Writer”. The Secrets of Generation: Reproduction in the Long Eighteenth Century, edited by Raymond Stephanson and Darren Wagner, Toronto: University of Toronto Press, 2015, pp. 238-257. https://doi.org/10.3138/9781442666924-015
3. Harrington A. The fall of the schizophrenogenic mother. Lancet. 2012 Apr 7;379(9823):1292-3. doi: 10.1016/s0140-6736(12)60546-7. PMID: 22489328.
4. Dolnick, E. (1998). Madness on the couch: Blaming the victim in the heyday of psychoanalysis. Simon & Schuster.
5. Cohut, M., PhD (2020, July 3). Racism in mental healthcare: An invisible barrier. https://www.medicalnewstoday.com/articles/racism-in-mental-healthcare-a….
6. Cham CQ, Ibrahim N, Siau CS, Kalaman CR, Ho MC, Yahya AN, Visvalingam U, Roslan S, Abd Rahman FN, Lee KW. Caregiver Burden among Caregivers of Patients with Mental Illness: A Systematic Review and Meta-Analysis. Healthcare (Basel). 2022 Nov 30;10(12):2423. doi: 10.3390/healthcare10122423. PMID: 36553947; PMCID: PMC9777672.
7. The United States Government. (2022, June 17). Reducing the economic burden of unmet mental health needs. The White House. https://www.whitehouse.gov/cea/written-materials/2022/05/31/reducing-th…
8. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
9. Liu YZ, Wang YX, Jiang CL. Inflammation: The Common Pathway of Stress-Related Diseases. Front Hum Neurosci. 2017 Jun 20;11:316. doi: 10.3389/fnhum.2017.00316. PMID: 28676747; PMCID: PMC5476783.
10. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
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Updated: December 14, 2023 by bmanfull@comcast.net
The Alex Manfull Fund welcomes distinguished scientists to Inaugural Medical and Scientific Advisory Board
LIFESTYLE
Portsmouth Herald
Published 2:00 p.m. ET Dec. 13, 2023 | Updated 2:01 p.m. ET Dec. 13, 2023
PORTSMOUTH — The Alex Manfull Fund, a leading nonprofit combating infection-associated immune-mediated neuropsychiatric disorders like PANDAS and PANS, has announced the formation of its inaugural Scientific and Medical Advisory Board.The Board is comprised of leading scientists and clinicians from institutions including Stanford University, Georgetown University, Massachusetts General Hospital, Tufts Medical Center, and Dartmouth Hitchcock Medical Center.
The 14-person, multi-disciplinary Scientific and Medical Advisory Board will advise The Alex Manfull Fund (TAMF) on advancing understanding of the causes, underlying mechanisms, and best treatments for patients with these serious disorders. The Board will also serve as a link between TAMF and the medical and research communities.
“Many members of the board are pioneers in this relatively new field and have conducted seminal research to understand and define PANDAS and PANS,” said Dr. Susan Manfull. “We are thrilled that they’ve chosen to dedicate themselves to realizing TAMF’s vision of a world without PANDAS and PANS.” Manfull and her husband William founded TAMF in 2018 following the death at age 26 of their only child, Alex Manfull, as a result of PANDAS/PANS.
The Board brings together professionals with expertise that includes neurology, neuropathology, immunology, psychiatry, rheumatology, pediatrics, gastroenterology, epidemiology, neuroethics, and the microbiome, reflecting the multi-disciplinary nature of the causes and treatment for PANDA/PANS
It is co-chaired by Juliette Madan, MD, MS and Richard Morse, MD from the highly respected PING (Psychiatry, Immunology, Neurology Group) Clinic at Dartmouth Hitchcock Medical Center. A complete list of the board’s members is below.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal Infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) are complex, debilitating conditions typically triggered by common infections that primarily impact children but also adolescents and adults. These disorders present like mental illness, but the causes are different, and the types of treatment required for lasting recovery are different.
Research is accumulating to show that infections such as strep, Lyme, mycoplasma pneumonia, and even COVID can lead the immune system to dysregulate and attack healthy brain tissue, setting the stage for inflammation to occur. PANDAS, first described by researchers at the National Institute of Mental Health in the 1990s and now subsumed by a broader category of neuropsychiatric disorders called PANS, is still frequently misdiagnosed by pediatricians and other physicians.
“It often takes many years and many doctor visits to get a diagnosis and proper treatment. People should not be suffering when there is hope for healing,” says Sheilah Gauch, LICSW, MEd, who is a Board Member of TAMF and Principal of Dearborn Academy, a therapeutic day school in Newton, Massachusetts.
The Alex Manfull Fund’s Scientific and Medical Advisory Board
Juliette Madan, MD, MS
PING (Psychiatry, Immunology, Neurology Group) Clinic at Dartmouth Hitchcock Medical Center.
Richard Morse, MD
PING (Psychiatry, Immunology, Neurology Group) Clinic at Dartmouth Hitchcock Medical Center.
Mark Pasternack, MD
Unit Chief, Pediatric Infectious Disease, Massachusetts General Hospital
Julia Zhang, MD
Pediatric Rheumatologist, Tufts Medical Center
Juliette Madan, MD, MS
PING (Psychiatry, Immunology, Neurology Group) Clinic at Dartmouth Hitchcock Medical Center.
Richard Morse, MD
PING (Psychiatry, Immunology, Neurology Group) Clinic at Dartmouth Hitchcock Medical Center.
Mark Pasternack, MD
Unit Chief, Pediatric Infectious Disease, Massachusetts General Hospital
Julia Zhang, MD
Pediatric Rheumatologist, Tufts Medical Center
Kyle Williams, MD, PhD
Director, Pediatric Neuropsychiatry and Immunology Program in the OCD & Related Disorders Program, Massachusetts General Hospital
Melissa McCormack, MD, PhD
General Practice Pediatrician in private practice
Beth Latimer, MD
Pediatric Neurologist in private practice
Pawel Kiela, DVM, PhD
Professor, Associate Director for Basic Science Research, Associate Professor, ImmunobiologyUniversity of Arizona
Brent Harris, MD, PhD
Co-director, Georgetown University Brain Bank Co-Director
Jennifer Frankovich, MD, MS
Director of PANS Research Program & Co-Director of the Immune Behavioral Health Clinic
Stanford University
Scott Dylla, PhD
Independent Biotech Angel Investor, Advisor and Entrepreneur
James Giordano, PhD, MPhil
Professor, Departments of Neurology and Biochemistry; Chief of the Neuroethics Studies Program; Co-Director, O’Neill-Pellegrino Program in Brain Sciences and Global Law and Policy
Georgetown University Medical Center
Peggy Chapman, PNMHCS
Clinical Nurse Specialist in private practice
Shannon Delaney, MD
Private clinical practice
Updated: November 17, 2023 by bmanfull@comcast.net
Commentary: Here’s why Memorial Bridge will be lit green for PANDAS/PANS Awareness Day
Susan Newman Manfull | Guest Columnist
Published October 7, 2023
Portsmouth’s Memorial Bridge will be illuminated green Monday night in recognition of PANDAS/PANS Awareness Day. In our state and across the nation, Oct. 9 is designated to call attention to this little-known group of medical disorders with peculiar acronyms that belie their horrific qualities. As proclaimed by Governor Sununu, this is the day for New Hampshire to realize that “it is imperative that there be a greater public awareness of this health issue, and more must be done to increase activity at the local, state, and national levels so that children can be more quickly diagnosed and treated.”
My daughter Alexandra “Alex” Manfull died at 26 years old from complications due to PANDAS/PANS and I hope that part of her legacy will be that no other young adult or child will suffer as she did.
We are grateful to Governor Sununu for signing this proclamation and affixing the Seal of the State of New Hampshire to the scroll-like document. The document includes a good definition of these disorders and acknowledges that PANDAS/PANS is often misdiagnosed and undertreated. This is critically important information – lives depend on physicians, nurses, mental health workers, teachers, and legislators knowing this information − but proclamations are only as effective as we are in amplifying their message. Maybe people will ask why the bridge is green and you can explain after reading this letter.
What is PANDAS/PANS? Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal infection (PANDAS) was first recognized in the 1990s. When it became apparent that, in addition to strep, there were other triggering infections (bacteria such as mycoplasma pneumonia, Lyme, bartonella and viruses like Epstein-Barr virus, Coxsackie, and coronavirus) that could lead to neuropsychiatric symptoms, a broader category, PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) was created which subsumes PANDAS. Symptoms are varied but always include obsessions and compulsions. Other cardinal symptoms include severely restricted food intake and motor or vocal tics as well as elevated anxiety, sleep disturbances, hyperactivity, sensory issues, school avoidance, deterioration in handwriting and math skills, explosive rage, extreme impulsivity, self-injurious behavior, and suicidal ideation.
Over time, it also became apparent that the disorders were not limited to pre-pubescent children. Although PANDAS/PANS occurs more frequently in children, it also occurs in adolescents and young adults.
Research suggests that, in some people, infections trigger the immune system to dysregulate and begin producing autoantibodies that attack healthy brain tissue, leading to neuroinflammation. The symptoms can be difficult to distinguish from those seen in traditional psychiatric disorders, but the cause is fundamentally different and hence the effective treatments that can achieve lasting success are different. Treatments typically include antibiotics (for any infections); over-the-counter anti-inflammatory drugs such as Motrin and Aleve and corticosteroids (for possible neuroinflammation); and, perhaps, immunomodulatory procedures (to address immune system dysregulation). The earlier the recognition (and diagnosis) and correct treatment, the better the prognosis and recovery.
Unfortunately, many medical providers are not familiar with infection-related, immune-mediated neuropsychiatric disorders, so misdiagnoses are rampant and disastrous. My daughter was not diagnosed for years after neuropsychiatric symptoms fitting a PANDAS diagnosis surfaced following strep and mono. She diagnosed herself, after years of seeing psychiatrists who failed to do so.
My husband and I donated Alex’s brain to the brain bank at Georgetown University Medical Center where The Alex Manfull Fund helped to establish the POND (PANDAS/PANS and Other Neuroimmune Disorders) Brain Bank. Neuropathological evaluations revealed brain damage in the basal ganglia (which is responsible primarily for motor control and executive, emotional, and cognitive functions) and nearby structures of her brain.
Other young people and their families lose years of their lives searching for a diagnosis and then, for a medical provider. There is a woeful shortage of physicians and mental health providers who are knowledgeable about these disorders, a crisis that takes us back to Governor Sununu’s proclamation: where is the funding to carry out “greater public awareness of this health issue” that Governor Sununu has described as imperative? Where is the funding to “increase activity at the local, state, and national levels so that children can be more quickly diagnosed and treated”? Let’s work together to find that funding.
Our small state is fortunate to have a world class PANDAS/PANS clinic at Dartmouth Medical School. Called PING – Psychiatry, Neurology, Immunology Group – this clinic has a multi-disciplinary team that can diagnose and treat these disorders. The Alex Manfull Fund is working with PING to establish programs to train more physicians in this area. This is the future.
It is increasingly recognized that as many as 30% of psychiatric disorders are not responsive to conventional psychiatric treatments. Psychiatric diagnoses must rule out other medical disorders, and the treatments must also address lingering infections, neuroinflammation, and immunological issues in those patients.
The Alex Manfull Fund is prepared to work with you, Governor Sununu, as well as our state legislators, and US Senators Maggie Hassan and Jeanne Shaheen, and US Congressional Representatives Chris Pappas and Ann McLane Kuster to make New Hampshire a model state.
Thank you, Governor Sununu, for identifying these critical issues and thank you, City of Portsmouth, for lighting the Memorial Bridge green, the color used to represent PANDAS/PANS. But all the proclamations and green bridges in the world will not change this dire situation until action is taken to ensure those afflicted with PANDAS/PANS are “more quickly diagnosed and treated.”
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Updated: October 1, 2023 by bmanfull@comcast.net
Why Caregivers’ Mental Health is Suffering
Caregivers of children with mental illness are struggling. What can be
done to help?
by Sheilah M. Gauch
Posted September 20, 2023 | Reviewed by Devon Frye
KEY POINTS
In my last two articles, I discussed chronic sorrow and the trauma caregivers of children with mental illness experience and how we might support them. As the youth mental health crisis worsens, this group gains more attention as a critical component of their children’s care.
Harvard recently published a report entitled “Caring for the Caregivers: The critical link between parent and teen mental health.” In an accompanying summary, the authors write, “It would be just as right to sound the alarm about parents’ mental health as about teens’ mental health.”1
Let’s ask ourselves why caregivers’ mental health is suffering and explore what we could do differently. When we understand the complexity of this type of caregiving (the chronic sorrow, trauma, isolation, otherness) we can team with them—not vilify them—revolutionizing how we help them, and their children.
Historical Blame
The history of how we have viewed these caregivers—and mothers specifically—as being to blame for their children’s illnesses has forever warped the lens through which we see this group. When we could not discover why mental illness occurred, from a medical standpoint, we built a foundation to try to understand what was happening. Without clear answers, many people, even apparent experts, pivoted to blaming caregivers.
Hysteria was first conceptualized around 1900 BCE as an affliction impacting women. It later evolved to describe emotional mothers who were unable to nurture their children.2 Then there were “schizophrenogenic mothers,” a term coined by Freudian analysts in the 1940s, assigning mothers, particularly domineering ones, responsibility for their children’s illness.3
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Dr. Leo Kanner, who published a landmark paper on autism in 1943, suggested that parents were a likely cause. He saw the mothers of these children as cold and distant (hence the later term “refrigerator mothers”) and the fathers inept, unaware of their child’s needs.4
Largely, these terms have been debunked by brave caregivers who demanded better for themselves and their children. Dr. Kanner publicly apologized to caregivers in the Autism Association; parents from NAMI (National Alliance on Mental Illness) demanded schizophrenia be treated as an organic illness; and hysteria was finally removed as a formal diagnosis in 1980.2,3,4
Still, the qualitative data I have from countless caregivers shows that caregiver blame persists. Caregivers report they are often given unsolicited advice by family, friends, and even strangers, detailing how they could change their behavior to alleviate their child’s suffering. Maybe they need to discipline more, maybe they need to be calmer, or maybe they are too overbearing. The message for caregivers throughout time is clear: If your child is suffering from a mental health issue, you may be to blame.
Case Managers
In addition to the weight of these historical narratives, caregivers I work with describe the experience of becoming de facto case managers of their children’s care. Tasked with finding providers, accessing insurance, and identifying appropriate therapies, they navigate complex systems of care with little to no training.
The educational, mental health, behavioral health, substance abuse, medical, and insurance systems all have different “languages.” Caregivers of children with mental illness must learn both the written, and unwritten, language of these systems to access care, often moving between multiple systems, desperately seeking answers and relief for their children.
Additional barriers make these systems virtually inaccessible to some groups. Racial disparities prove to be a formidable barrier, with African Americans, Latinx, and Asian Americans accessing care at rates 50 to 70 percent lower than white Americans.5 Cultural differences challenge access when providers miss critical nuances of a client’s background that could assist in care.6 Socioeconomic barriers are a primary reason that some people don’t access care, with research indicating many can not afford the cost of treatment or insurance doesn’t cover enough mental health services.7
The Impact of These Barriers
Even with my professional training in mental health and education, I quickly became overwhelmed caring for my children’s mental health needs (OCD, separation anxiety, behavioral dysregulation). The support my children required (supervision, appointments, etc.) led us to decide one caregiver would stay at home to ensure they received care. Down one income, we struggled to find affordable therapy. Providers who specialized in the treatment of their specific needs, and accepted insurance, were nearly impossible to find.
Adding to this stress, our children were not regaining health. Regardless of what treatment we tried, they got sicker. We now know this was because they had underlying medical causes to their mental illness (they have PANS/PANDAS) but we were unaware of this for most of their childhoods. As their illnesses worsened, we became more isolated, fearing others must see us as to blame. Blame was easy to accept; I was their mother and seemingly powerless to help them.
Acknowledging the Whole Person
Caregivers take on historical blame, barriers to care, chronic sorrow, and trauma without hesitation. Their children are who matter most; helping them often leads to forgetting to help themselves. Providers may also be so focused on the child, they miss asking about caregivers.
The Centers for Disease Control tells us that 61 percent of adults have had at least one adverse childhood experience (ACE) and 16 percent had four or more types of ACEs.8 This means many caregivers now supporting children with mental illness have previous experiences that may complicate how they support their children’s illness.
Providers who recognized me as a whole person, with life experiences that impact how I support my children, were critically important to my family. They took the time to learn the history of serious mental illness in my family and how I fought to stay healthy and avoid this fate, only to develop acute depression and anxiety in college.
These were then the professionals who could support me when the horror of being unable to stop my child’s pain, combined with first-hand knowledge of how awful mental illness is, intensified my stress reaction. If you didn’t know this, you could have mistaken my intense fight response as “challenging,” “angry,” or maybe even “hysterical.” Those who took the time to understand and care for me were who I trusted to teach me the skills to regulate my own stress response, making it easier for me to access care for my children.
Why This Matters and Why Healing Is Essential
Learning about this stress response and how to manage it is essential for caregivers’ health. Recent research details stress as an inflammatory event that causes a myriad of illnesses, confirming what trauma therapists have known for years: stress and trauma impact physical health.9Longitudinal ACE studies previously linked multiple ACEs to chronic health problems, mental illness, and substance misuse in adulthood.10
A dear friend of mine, who is a single mother of two children with mental illness, recently said to me: “I am up all night trying to get them to bed and then can’t sleep worrying about how to help them.” Her physical health has begun to suffer. With her doctor’s appointments taking up more of her time, the worry compounds.
My friend’s mental health impacts her physical health—creating a closed loop that sustains illness. How will she keep her job if she needs to miss work for both her and her children’s appointments? Her ultimate fear is that if anything happens to her, there is no one to care for her children.
Shifts in Practice
My friend deserves to heal; her children need her and she is worthy of healing. Understanding these health implications as well as the historical blame, barriers to care, chronic sorrow, and trauma must lead us to change how we view and work with this group. At the therapeutic day school I help oversee, we worked hard to do this—creating what I call our MTSS (multi-tiered system of support) for caregivers.
Our entire staff team is trained to lead with empathy, compassion, and understanding for our caregivers. We offer a trauma group to teach tools to care for themselves and seek support from each other. We offer them coaches who assist in establishing services outside of school. We developed an intensive intake process that allows clinicians to listen to caregivers, understand their experiences, and build trust critical if we hope to help them and their children.
How can we innovate, look for new ways to support this group, and avoid history repeating itself? My own children’s mental health journey has led me to wonder: Is my family history with mental illness really a family history with complicated medical issues? I have also found healing from my own depression and anxiety as an adult through learning about this medical connection. Let’s revolutionize how we view mental illness and how we help people—children and caregivers alike.
References
1. Making Caring Common. (2023). Caring for the Caregivers: The Critical Link Between Parent and Teen Mental Health https://mcc.gse.harvard.edu/reports/caring-for-the-caregivers
2. Meek, Heather. “10. Motherhood, Hysteria, and the Eighteenth-Century Woman Writer”. The Secrets of Generation: Reproduction in the Long Eighteenth Century, edited by Raymond Stephanson and Darren Wagner, Toronto: University of Toronto Press, 2015, pp. 238-257. https://doi.org/10.3138/9781442666924-015
3. Harrington A. The fall of the schizophrenogenic mother. Lancet. 2012 Apr 7;379(9823):1292-3. doi: 10.1016/s0140-6736(12)60546-7. PMID: 22489328.
4. Dolnick, E. (1998). Madness on the couch: Blaming the victim in the heyday of psychoanalysis. Simon & Schuster.
5. Cohut, M., PhD (2020, July 3). Racism in mental healthcare: An invisible barrier. https://www.medicalnewstoday.com/articles/racism-in-mental-healthcare-a….
6. Cham CQ, Ibrahim N, Siau CS, Kalaman CR, Ho MC, Yahya AN, Visvalingam U, Roslan S, Abd Rahman FN, Lee KW. Caregiver Burden among Caregivers of Patients with Mental Illness: A Systematic Review and Meta-Analysis. Healthcare (Basel). 2022 Nov 30;10(12):2423. doi: 10.3390/healthcare10122423. PMID: 36553947; PMCID: PMC9777672.
7. The United States Government. (2022, June 17). Reducing the economic burden of unmet mental health needs. The White House. https://www.whitehouse.gov/cea/written-materials/2022/05/31/reducing-th…
8. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
9. Liu YZ, Wang YX, Jiang CL. Inflammation: The Common Pathway of Stress-Related Diseases. Front Hum Neurosci. 2017 Jun 20;11:316. doi: 10.3389/fnhum.2017.00316. PMID: 28676747; PMCID: PMC5476783.
10. Center for Disease Control Vital Signs (2021, August 23). Adverse Childhood Experiences (ACEs): Preventing Early Trauma to Save Adult Lives. Center for Disease Control Vital Signs. Retrieved September 8, 2023, from https://www.cdc.gov/vitalsigns/aces/index.html
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Updated: June 27, 2023 by bmanfull@comcast.net
Technical Report: Self-Harm and Suicidality in Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Immunopsychiatric Disorders
My brief thoughts: Gunilla Gerland, ex-Chair of SANE, the Swedish PANS/PANDAS organization (2013-2020), recently translated her (2021 – 2023) work to create this English version. Although a difficult subject about which to read, it is a must-read for all those interested in fully understanding immune-mediated neuropsychiatric disorders such as PANS and PANDAS. The material, based on survey input from 240 mainly parental respondents, is meticulously (and I hasten to add sensitively) presented and it provides a wealth of findings that, I hope, will bear further research. For example, “Those who had not attempted suicide nor ever had self-harming behavior (n = 100) reported an average of 18.6 symptoms. Those who attempted suicide and/or had self-harming behavior (n = 110) reported a higher number of symptoms, with an average of 24.8. Those who made their first suicide attempt before the age of 11 (n = 8) had a significantly higher number of symptoms, with an average of 33.8. ” (page 9)
Updated: January 16, 2023 by bmanfull@comcast.net
Supporting the Whole Child
Identifying new pathways to help more children.
by Sheilah M. Gauch
Posted November 25, 2022 | Reviewed by Ekua Hagan
KEY POINTS
We are at a pivotal moment regarding support for children right now. The systems designed to help them are at their breaking point. As a social worker, I am acutely aware of the mental health crisis we are facing. Medical and public health systems, and the providers who work in them, are struggling to meet the current level of need.
As an educator, I can share that all of these systems impact schools, and nowhere is the crisis hitting more of a crescendo than in education. Add in anxiety and stress over learning loss, an unprecedented staffing shortage, and the fact that no federal special education laws were changed, and you get a crisis of epic proportions.
Only the educational system is truly bound, by law and mandates, to support the whole child. Our educators are not just called on to ensure academic progress, but also the safety, health, emotional, and cognitive well-being of all students. We urgently need paradigm shifts in our systems that care for children if we hope to shore up our schools, support our children, and by proxy their educators, families, and communities.
Current Practice
The educational system’s whole child mandate was highlighted for us when our daughter had an acute onset of mental health symptoms in second grade and her brother followed with a slower decline, but similar symptoms. They presented with panic attacks, OCD, mood lability, sensory issues, and intense separation anxiety.
We initially turned to the system that I knew best: the mental health system. We went from professional to professional, from medication to medication, from diagnosis to diagnosis with no true solution or healing. We then had to ask our local school system to shift how they supported them. Both children were academically capable, yet their mental health symptoms prevented them from making effective progress. Our daughter was in third grade, and our son in second, when each qualified for an Individual Education Plan (IEP). They were placed in therapeutic day schools outside our community, costing our school district close to $100,000 a year in tuition and transportation.
This level of support for our children was accessible because of the decades of federal and state legislation, as well as significant case law, that has increased the breadth and depth of what public schools are mandated to provide for students. For our children, the Individuals with Disabilities Education Act (IDEA) ensured they would have access to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE) to access the curriculum and make effective progress. While other systems attempted to help them make progress, only the educational system was mandated to step in and support them.
Schools in Crisis
As we walk out of the pandemic, our schools are struggling to be what these laws, mandates, and case law have essentially made them: de facto medical, mental health, and community care centers. Mental health needs are soaring, with 70 percent of public schools reporting an increase in the percentage of their students seeking mental health services at school since the start of the COVID-19 pandemic, and three-quarters of schools also reported an increase in staff being concerned that their students are showing symptoms such as depression, anxiety, and trauma. Further, post-pandemic we are seeing chronic absenteeism soaring, with most school districts across the country reporting a significant uptick, particularly among lower-income and marginalized populations.
Complicating this level of need is the fact that many districts are in an unprecedented staffing crisis, with some districts short dozens of critical positions. As no federal special education laws were modified during the pandemic, schools remain obligated to the same services and compliance measures as they were pre-pandemic. Schools have been asked to pivot, shift, and accommodate the ever-changing, ever-growing level of needs of their students during this time.
Thinking Differently
Our children’s school system benefited from a radically different way of viewing and treating their mental illness. While both children remained in therapeutic day schools for the majority of their K-12 years, something miraculous happened in our son’s fifth-grade year. At the time, his symptoms were worsening, and we thought we may lose him to suicide, when we learned about an illness we had never heard of: PANDAS/PANS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep/Pediatric Acute-Onset Neuropsychiatric Syndrome). This illness has roots in the body, with viruses and infections (ie. strep, flu, COVID) triggering a host of neuropsychiatric symptoms in the brain. As a social worker, I was skeptical. I was taught to always rule out medical causes of mental illness and had never heard of this disorder. In desperation, we had our son screened.
When he was diagnosed with PANS/PANDAS, we had our daughter screened as well. She also received the diagnosis. With treatment, both children began to heal in ways we never expected. In ways, as a social worker, I never thought were possible. Their fears abated, their confidence grew, and they advocated to leave their small therapeutic schools and return to their community high school setting. With the proper diagnosis and treatment, they were both able to move back to a less restrictive environment and find true healing.
Our local school district funded the schooling of both of our children. I calculated the cost at just under a million dollars to educate both children. The emotional toll on our children and family has been immeasurable. If mental health and medical professionals had been aware that strep throat and viruses can cause mental health symptoms and done a simple strep test when our daughter was 7 and our son was 5, our children may have been caught far earlier, treated, and been able to remain in their community schools.
Shifting the Paradigm
Recognizing the connection between viruses, infections and mental health is just one paradigm shift that would be critical in helping our schools. We know from current research and science that COVID comes with 20 to 40 percent neuropsychiatric symptoms, including anxiety and depression. Doing a differential diagnosis every time and ruling out medical causes of mental health is part of our mandate in mental health, and will support our schools in helping children heal and not be relegated to a lifetime of symptom management. Our children are one example; we do not know how many others have been missed.
What other ways can we shift our practice—create new ways of thinking and working together to help children and schools? We must think differently, be open to new ideas, and team together to create change. If we keep at the forefront the belief that helping the whole child is the best practice, we can have courageous conversations together to create paradigm shifts that can produce lasting, meaningful change in schools and in all the systems that support them.
References
Institute for Educational Services.(2022, May 31). Roughly Half of Public Schools Report That They Can Effectively Provide Mental Health Services to All Students in Need. National Center for Education Statistics. https://nces.ed.gov/whatsnew/press_releases/05_31_2022_2.asp
Institute for Educational Services.(2022, July 6). More than 80 Percent of U.S. Public Schools Report Pandemic Has Negatively Impacted Student Behavior and Socio-Emotional Development. National Center for Education Statistics.https://nces.ed.gov/whatsnew/press_releases/07_06_2022.asp
Kumar, S., Veldhuis, A., & Malhotra, T. (2021, March 2). Neuropsychiatric and Cognitive Sequelae of COVID-19. Frontiers in Psychology. Sec. Psychology for Clinical Settings https://doi.org/10.3389/fpsyg.2021.577529
Updated: June 27, 2023 by bmanfull@comcast.net
Radio Interview with Dr. Janet Cunningham and Susan Manfull, PhD on WSCA’s Seacoast Currents
Dr. Janet Cunningham, a psychiatrist who specializes in immunopsychiatry at Uppsala University Hospital in Sweden, was in Portsmouth as a presenter for the October 1st PANDAS/PANS Symposium hosted by The Alex Manfull Fund.
Dr. Cunningham dropped by the WSCA FM Radio Station for what was an outstanding interview with Kathy Somssich and Larry Drake.
Wow! Incredibly thought-provoking! A must-listen-to for all followers of The Alex Manfull Fund.
Updated: October 11, 2022 by bmanfull@comcast.net
New Research Shows Rare Gene Variants Can Impact Neuropsychiatric Disorders Triggered By Strep And Other Infections
New Research Shows Rare Gene Variants Can Impact Neuropsychiatric Disorders Triggered By Strep And Other Infections Researchers from the US and the Netherlands released new findings at a symposium in Portsmouth, New Hampshire hosted by The Alex Manfull Fund that could impact future testing for post-infectious neuropsychiatric disorders called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)
PORTSMOUTH, N.H. (PRWEB) October 07, 2022– Researchers from the US and the Netherlands released new findings at a symposium in Portsmouth, New Hampshire that could impact future testing for postinfectious neuropsychiatric disorders called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)
Experts say the rapid onset of OCD, anxiety, and tics in children and young adults can be triggered by infections such as strep (streptococcal) bacteria, however, the underlying infectious cause is not widely recognized or treated. According to Herb Lachman, MD, a significant problem in PANDAS and PANS disorders is the lack of reliable tests that can be used to help physicians diagnose the condition. In addition, the response to various immune-based treatments is variable. Says Lachman, “These problems create PANS skepticism among physicians, preventing PANS patients from getting proper care. One way to address this conundrum is to identify genes that might be involved in the predisposition to develop PANS.”
DNA sequencing studies carried out by Drs. Lachman, Peter van der Spek, and Rosario Trifiletti have resulted in the identification of more than a dozen such genes. The studies show that the PANS clinical state can be caused by several different pathways including dysfunction of immune regulation and alterations in the function of glutamatergic neurons, one of the major neurotransmitter systems in the brain. In addition, overlap was found between the mutations that increase PANS susceptibility with autism spectrum disorders and immune disorders.
Says Lachman, “With additional genetic studies, we hope to identify new treatment paradigms or match specific immune-modulating medications to patients depending on their underlying genetic profile.”
The team released their findings at the symposium, entitled PANDAS/PANS: Recognizing, Understanding and Treating Immune-Mediated Neuropsychiatric Disorders in Portsmouth, New Hampshire last week. Other new advances were also discussed.
Says organizer Susan Manfull, PhD, who lost her daughter to PANDAS, “The Alex Manfull Fund is a nonprofit organization that is committed to providing an opportunity for clinicians to discuss early detection and treatment.” The event was filled to capacity and videotaped recordings will be available for viewing on the website soon at no charge:
Says Manfull, “Those in attendance learned from world-renowned experts how to distinguish immune-mediated mental health disorders from primary psychiatric disorders; the symptoms are similar but the cause is different and requires treatment of the underlying infection like strep or lyme disease.”
About The Alex Manfull Fund
The Alex Manfull Fund was established in 2018 to build awareness of PANDAS/PANS so young people will have improved treatment outcomes. Alex Manfull was 26 when she died from the effects of PANDAS. Her parents started the nonprofit organization to honor their daughter’s legacy: TheAlexManfullFund.org
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Updated: March 15, 2023 by bmanfull@comcast.net
Portsmouth parents who lost daughter Alex Manfull at 26 bring PANDAS symposium to city
by Karen Dandurant
Portsmouth Herald
Published September 30, 2022
PORTSMOUTH — William “Towny” and Susan Manfull, who lost their daughter four years ago, have directed their pain into a lifelong mission to understand what took the life of their child and raise awareness that might save someone else’s child.
Alex Manfull was 26 when she died in 2018 after suffering from PANDAS (pediatric autoimmune neuropsychiatric disorder). Her parents work to honor her legacy.
On Saturday in Portsmouth, a symposium, entitled PANDAS/PANS: Recognizing, Understanding and Treating Immune-Mediated Neuropsychiatric Disorders, will share new advances and provide an opportunity for clinicians to discuss improving early detection and treatment.
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Updated: November 25, 2022 by bmanfull@comcast.net
Joanne Knight
Following a successful 20 year career as an international banker, where she served some of the world’s largest multinational corporations in Chicago, London, and Milan, Joanne Knight joined Merrill Lynch as a Financial Advisor in May 2013 as part of the Portsmouth, New Hampshire-based Drew Wealth ManagementGroup.
Joanne specializes in working with women clients. Women control an ever-growing proportion of private wealth in America and when it comes to financial advice they are looking for an authentic advisory experience relevant to their unique needs and very individual experience. Joanne provides that authentic experience by having an in depth understanding of the needs and goals of each of her clients.
In between her two financial careers Joanne became a Certified Holistic Health Coach and built a successful practice counseling individuals and families on how to live healthier lives.
Joanne received her BS in finance from the University of Illinois and her MBA in Finance and Economics from the University of Chicago Booth School of Business. She currently resides in Portsmouth, NH. Interests include travel, hiking, biking, skiing, being a mom, and making an impact on the world.
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Updated: November 25, 2022 by bmanfull@comcast.net
Barbara Erban Weinstein
Barbara Erban Weinstein has been a health care executive in the private and public sectors for over thirty years. Most recently, Ms. Weinstein has served as a consultant to UMass Memorial Health where she previously held senior management positions.
She served as the Commissioner of the Division of Health Care Finance and Policy for the Commonwealth of Massachusetts, a position appointed by the Governor. Barbara held executive vice president and senior vice president positions in Southern California for two financial institutions; prior to that she worked as a consultant for Bain & Company in Boston.
Ms. Weinstein earned an MBA from Harvard University and a BA in Economics and a certificate in Russian Studies from Princeton University. She served on the boards and as treasurer of several organizations including the Massachusetts Health Data Consortium and the Big Sister Association of Greater Boston.
Her connection to The Alex Manfull Fund is deeply personal – Alex and Barbara’s son were high school and college classmates, competitive rowers together, and devoted friends. Alex’s parents and Barbara and her husband spent many happy times manning the parent food tent at their children’s crew races.