LI Mom On Mission To Spread Awareness Of Rare Disease

BOHEMIA, NY — A Bohemia mom is looking to spread awareness and help other local parents after her 4-year-old son was diagnosed with a rare disease.

Christine Hernandez, who runs the Sayville-Patchogue Moms group, recently decided to start a new group after her son, Griffin Hernandez, was diagnosed with PANS or Pediatric Acute-onset Neuropsychiatric Syndrome.

According to Christine, PANS and PANDAS (Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Strep) occur when an infection, virus, vaccine or other environmental triggers cause a misdirected immune response and results in inflammation in a child’s brain.

The disease can cause symptoms in children such as OCD, anxiety, tics, personality change as well as a decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

"For Griffin, the change was rather sudden," Christine told Patch. "On Father's day this summer he started displaying some concerning behaviors that eventually led us to consulting a neurologist who felt he had autoimmune encephalitis and admitted us to the hospital for an in-depth workup and a 3-day dose of steroids. The steroids helped remarkably, but their tests did not uncover any underlying infections so they shrugged their shoulders. Also, due to the pandemic, the psychologist that was supposed to see him in the hospital was not making rounds and so the only proof of the steroids working was our own account of his improvement."

Eventually, thanks to help from her pediatrician, she learned that PANS is a clinical diagnosis and since there are no formal tests yet, it is often difficult to find a diagnosis. As a result, both PANS and PANDAS can often be misdiagnosed as autism, ADHD, OCD, or other mental health conditions. However, while they do display similar symptoms, PANS and PANDAS can be treated.

After working with three neurologists, a private neuropsychologist who did not take any insurance, and a functional medicine practitioner who also did not take their insurance, the family is now working with a specialist, who is looking for the underlying cause for Griffin's illness. Christine says there are studies being done to find the antibodies responsible for PANS and PANDAS so that there will someday be a test, but the diseases are still very misunderstood which is why she is working to spread awareness.

After racking up the bills for all the specialists as well as professionals to handle the mold in their home, which can worsen autoimmune conditions, the family now has a mountain of expenses.

"As a parent, you will stop at nothing to help your child, even if that means maxing out your credit cards to pay for their care," Christine said. "We have insurance, but a very high deductible and are left to pay out of pocket for most of Griffin's treatment."

As a result, the family started a t-shirt fundraiser to not only help offset some of the costs but also to spread awareness of PANS and PANDAS. Christine also started an Instagram account, @parentsofpandas, to connect with other families and is working on putting together virtual workshops for parents to help them find specialists.

"This whole experience has been a stressful, lonely road and we hope by sharing our story- other families going through the same thing will feel less alone," she said. "We also hope that any families who experience a sudden and dramatic behavior change in their child will look into PANS/PANDAS. I hope that the light of the end of all of this is not only that we get our sweet boy back, but that we can help others get their children back too."