Photo Credit Camilo Morales
PANDAS often misdiagnosed
May 10, 2018

PANDAS Syndrome is a relatively recent medical discovery that affects children’s immune system. It is a neuropsychiatric disorder associated with streptococcal infections. The problem for many children is they are often misdiagnosed with obsessive-compulsive disorder or ADHD.

That is why Lucas Carroll ’18 (Grand Beach, Michigan) is trying to raise awareness about the disorder. He has a younger cousin who spent years seeing eight doctors before being successfully diagnosed. In the interim, she was given the standard treatment options for ADHD or autism, which only made matters worse.

Now (photo, from left) Carroll, Rockwell Nierenberg ’18 (Carefree, Arizona) and George Cruickshank ’18 (Anchorage, Alaska) are organizing a PANDAS awareness bike ride around Lake Maxinkuckee over Alumni Reunion Weekend. The event will be Saturday, May 19, at 10 a.m.. This is not a fundraiser, they said, but rather an opportunity to make more people aware of this disorder which wasn’t described in medical journals until 1990.

While Culver Academies students cannot ride, the event is open to the public. People will be required to sign a standard waiver to participate. The ride will start at the Naval Building at 10 a.m. The group has a limited number of bikes available for visiting alumni. Members of the faculty and staff will be joining the ride. Those wishing to reserve one should email Cruickshank.

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections. In working on this service project, Carroll said PANDAS is believed to be caused by an autoimmune response to a strep infection. The strep molecules hide in the child’s immune system by mimicking normal cells. After being discovered, the immune system produces antibodies to attack the foreign cells, but they also accidently attack healthy cells as well. This causes OCD, tics, separation anxiety, and other systems.

But, since the disorder is so new and somewhat rare – it affects only one in 200 children – many parents are unaware of the disorder, he added. This is why PANDAS is misdiagnosed and medicated incorrectly, which just exacerbates the child’s condition.

One sign that a child may have PANDAS is how often he/she has a strep throat. If a child has a case of strep six, seven, or eight times over a relatively brief period, that could be a warning signal, Carroll said.

The disorder is usually found in children ages three through nine, but the age range can vary on either side, he added.

Carroll, Nierenberg, and Cruickshank are hoping people participating in the bike ride will remember the disorder. By making more people aware of PANDAS “we can ensure that parents are able to recognize the signs of the disorder,” Carroll said. That will, in turn, help children with the disorder receive the right diagnosis and proper treatment.

For more information, go to the PANDAS Network.

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