A family in Lowell, Massachusetts, is turning to the community for support as they navigate the challenges of caring for their nine-year-old son, Jack Linehan, who has been diagnosed with a rare autoimmune disease known as PANS/PANDAS. This condition significantly impacts Jack’s daily life and has led to escalating health issues since his diagnosis in May 2023.
Jack was an active and cheerful child until November 2022, when his behavior began to change dramatically. His mother, Lisa Linehan, recalls the early signs: school anxiety, mood swings, and ultimately, violent outbursts. “We made countless emergency room visits. We didn’t know what was wrong with him,” she said. After months of uncertainty, a suggestion from a colleague led to the realization that Jack’s symptoms aligned with PANDAS, a serious condition linked to infections that can trigger severe psychiatric symptoms.
PANS/PANDAS combines Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). These disorders can manifest as obsessive-compulsive disorder (OCD), tics, anxiety, and other debilitating symptoms. October 9 is recognized globally as PANS/PANDAS Awareness Day, aimed at enhancing understanding and promoting timely diagnosis.
Despite Jack’s diagnosis, the road to receiving appropriate medical care has been fraught with obstacles. Lisa describes a challenging experience in the hospital, where doctors were initially skeptical about testing for PANDAS. “We had to fight for him to get tested in the hospital because some doctors don’t believe in PANDAS/PANS,” she stated. Following persistent advocacy, Jack tested positive for two brain infections, mycoplasma encephalitis and strep, which had gone undiagnosed for over two years.
With this diagnosis, Jack faces a myriad of symptoms that complicate his daily life, including Tourette’s syndrome, OCD, insomnia, and episodes of panic and depression. “His body was attacking his brain,” Lisa explained, emphasizing how the condition has fundamentally altered their family dynamics.
In light of their situation, the Linehan family established a GoFundMe page to help cover mounting medical expenses, which have become increasingly burdensome with Lisa leaving her job to care for Jack full-time. As of now, they have raised $4,071 towards their goal of $7,500. “To have people donate to our GoFundMe for Jack is overwhelming,” Lisa remarked, expressing gratitude for the support they have received.
The family’s financial strain has intensified following a recent move from Fitchburg to Lowell, where their rent doubled. Lisa shared the emotional toll this has taken on them, particularly with the holiday season approaching. “I’m feeling very stressed. I don’t even want to celebrate to be honest,” she said. The family is currently navigating the complexities of reduced income and increased expenses while trying to ensure Jack receives proper care.
Jack’s daily routine has shifted significantly. He now attends virtual school through Acellus Academy due to his inability to cope with in-person classes. “School is a huge trigger for him,” Lisa noted, highlighting the difficulties Jack faces as he attempts to maintain an education amid his health challenges.
In addition to medical treatment, Jack receives weekly therapy sessions via telehealth, as leaving home is often too overwhelming for him. He has been on antibiotics for the past six months and is set to start intravenous immunoglobulin (IVIG) therapy, which provides essential antibodies to help combat his conditions.
Lisa expressed the emotional toll watching her son struggle takes on her. “It’s hard watching your child struggle and have meltdowns because he physically can’t go to school,” she said, reflecting on the challenges they face as a family. “Some days are harder than others; you never know what the day is going to bring.”
The Linehan family has found solace in their support network, which includes family members and community support groups. Lisa has also sought therapy to help manage the emotional challenges that have arisen from their situation. “I’m in therapy myself just because of everything going on,” she admitted, acknowledging the importance of mental health during this trying time.
As they continue to advocate for Jack’s health, the Linehans remain focused on raising awareness about PANS/PANDAS. “We just want to spread awareness of this horrible disease,” Lisa stated. Their ultimate hope is for Jack to recover fully, allowing him to return to the vibrant child he once was. “I want my Jack back. I want him to be happy and run around and play with kids,” she concluded.
The family’s journey highlights the critical need for awareness and understanding of rare autoimmune diseases, as well as the impact such conditions have on families. As they strive to navigate these challenges, the support from their community remains invaluable.
