When Briggs and Kia welcomed their twins Eli and Sophie Kate (6) into the world, they were happy and healthy. A few years later they noticed some unique behaviors that they had never seen before in any of their children. After countless doctor visits, the Cooks finally received a diagnosis: PANDAS. PANDAS is caused by streptococcal infections (strep throat) where antibodies “mistakenly attack proteins in the brain resulting in neurologic or psychiatric symptoms”. Common symptoms include the dramatic onset of OCD, tics, anxiety, irritability, aggression, sleep disturbances, and motor abnormalities. Considered a pediatric disorder, PANDAS typically develops between the ages of 3 and 10.
PANDAS was first officially identified in 1998, thus there is still a lot of research to be done and awareness to be raised! Often PANDAS is misdiagnosed as mental illness, and in younger children the symptoms are often ignored as something they’ll just “grow out of”. This not only delays treatment, but it can be a very stressful and emotional time for all involved.
Dr. Briggs Cook and his wife encourage other parents of children with PANDAS to unite and support each other. Do your own research, join support groups online and in your area. Actively participate and spread awareness.
Treatment requires a focus on both the physical and psychological symptoms. The first step is to treat a strep infection with antibiotics. As for the psychological aspects, there are various treatments available dependent on the symptoms one experiences. For example, selective serotonin reuptake inhibitors (antidepressants) can help lessen the severity of OCD and depression.
It is important to get multiple opinions and to try different treatments to see what works for your individual case. Many children experience different symptoms, so what works for one does not always work for the other. While some individuals with PANDAS react well to treatments and can attend school and function relatively “normally” (in reference to their regular routines pre-PANDAS), others struggle to find a treatment that allows them to leave their home and/ or parents. Separation anxiety, violent outbursts, and depression can take over their lives.
For more on the Cook family’s experience with PANDAS, read their interview here.
For those interested in learning more, Dr. Briggs Cook recommends the following links:
–This Is What It’s Like To Live With The Monster That Is PANDAS
–The Unsung Psychiatric Impact of Strep Throat
–Local parents trying to spread word about disorder that changed their lives
–PANDAS Affects Siblings Too: Connecting Through Pain
-“Brain on Fire” (2016), a movie that covers a woman’s sudden change in behavior, from violent outbursts to catatonia. Cook says the term “brain on fire” accurately describes what it’s like when someone with PANDAS experiences a flare.