'My Kid is Not Crazy'

(Editor’s Note: At the request of parent Sophie Fowler for privacy purposes, The Daniel Island News is not revealing the gender of the child featured in the story below. The youth is described simply as “the child” or “they.”)

After Mount Pleasant resident Sophie Fowler’s child came back from a friend’s house suddenly showing symptoms of extreme depression and separation anxiety, as a medical professional she knew something was wrong.

At first, she explained, she thought it was because her child did not get enough rest. Unfortunately, the following night the child was unable to fall asleep until the early hours of the morning and the next day, her child was silent, seemingly depressed and “confused about life.” When Fowler would walk around the house, her child wouldn’t leave her side.

“This was a child who went to a camp at church for four days away from us this summer and the following month in one day I couldn’t even go to the bathroom without my child following me,” said Fowler. “OCD set in, but at the time I didn’t know what it was. They were obsessively confessing every thought. They wouldn’t see any of their friends and barely could leave their room. They had loved football and followed it for the past five years, but now it scared them. My child couldn’t even watch a four year old cartoon without screaming. They also were in honors math in sixth grade and they lost all their skills.”

To many in the medical world, these symptoms point directly to a psychological disorder. But for those who are aware of the 30-year research conducted by Dr. Susan Swedo, chief of the Pediatrics & Developmental Neuroscience Branch at the National Institute of Mental Health (NIMH), Fowler’s child exhibited telltale signs of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).

“PANDAS and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) are neuropsychiatric syndromes triggered by a faulty immune system response,” according to www.pandasnetwork.org. “[Children] may experience symptoms after a ‘strong stimulant’ to the immune system such as strep infection, flu or even the common cold. In a child with PANDAS or PANS, the immune system is thought to mistakenly react and cause brain inflammation in the basal ganglia region. This reaction may cause neurological, psychological, and cognitive symptoms as a result of neurological inflammation.”

In hopes of educating the public about PANDAS and PANS, Fowler, who is a member of the local advocacy group PANS Research Advocacy Initiative (PRAI), organized a showing of the documentary, “My Kid is Not Crazy,” a film by Tim Sorel, on Jan. 11 at the Daniel Pointe Retirement Community Theater on Daniel Island. The film was followed by a panel of special guests prepared to answer community questions.

According to a press release from the PANS Research and Advocacy Institute (PRAI), although it is estimated by the NIMH that 1 in 200 children in the U.S. alone will contract PANDAS or PANS, the diagnosis of both conditions has been considered controversial among many medical professionals – and as a result, many pediatric physicians have been left in the dark on proper treatment.

“The worst of it, was that my child would scream that their brain wasn’t working right” said Fowler. “It was like they were stuck in the nightmare. During this time my father had just died and I was planning the funeral for him. I felt like my child had also died because every part of their personality was gone. They did come back. It was a slow return, after six weeks of antibiotics, anti-inflammatories and low dose SSRI, (my child) came back!”

Unlike a number of cases that are misdiagnosed or left untreated for months or even years, the doctors at the Medical University of South Carolina (MUSC) were able to diagnose Fowler’s child in just 12 days. But because of the lack of knowledge surrounding PANDAS, Fowler said her child was placed on a shorter term of antibiotics than the typical several months to years that is needed to treat the illness. Post their appointment at MUSC, the Fowlers flew to New Jersey in August of 2017 for a second opinion, which also confirmed the diagnosis of PANDAS.

“At MUSC on the last day, they diagnosed it but, unfortunately, they didn’t treat it right,” said Fowler. “They only put (my child) on two weeks of antibiotics when it usually needs a longer course of treatment – and (my child) did. We got our pediatrician to order more and then we ended up taking ibuprofen as an anti-inflammatory. We also got low-dose Zoloft…When we flew to New Jersey, they found that (my child’s) immune system had some issues. When they found that, they decided to keep (my child) on the antibiotic, so (my child) has been on the low dose antibiotic since this happened, which was August of last year.”

With PANS and PANDAS, relapse is very common, but thankfully for the Fowlers, their child only experienced one minor relapse after the initial diagnosis.

“It happened when (my child) had a surgery removal of (a) lymph node that had strep. (They) had another strep infection, but it was extremely minor compared to what the first onset was. Antibiotics and steroids were used immediately that time. We just upped the dosage and it worked and (my child) was okay.”

Before receiving the diagnoses at MUSC, Fowler, although a medical professional, had never heard of PANDAS. Even more troubling, only one out of the number of colleagues she confided in had heard of the condition.

“I still feel like I need to be the one advocating because I only had one person who I told that actually knew what it was and I have probably 15 or 20 friends that are medical professionals,” said Fowler.

The film “My Kid is Not Crazy” follows the story of six children and their families who are drastically affected by PANDAS. It includes interviews with Swedo and explains the treatments that these children actually needed and eventually underwent.

“Due to the lack of knowledge in the medical community and the controversial diagnosis, these families were unable to find the healthcare they needed immediately,” continued the PRAI press release. “Over several years, these families suffered a tremendous loss.”

Additionally, PRAI volunteers have been making it a priority to meet with congressmen and senators across the state in hopes of bringing forward legislation that would provide better healthcare and research for PANS/PANDAS patients, according to the press release. In 2017, PRAI hosted a statewide walk-a-thon to raise funds for research and awareness. Currently, volunteers are working in their communities to provide educational resources and support to other PANS/PANDAS families.

For more information about neuroimmune disorders such as PANS and PANDAS or to learn more about the organization PRAI, visit http://praikids.org/.