Beth Maloney was a recent guest on Doctor Radio: About our Kids on Sirius XM 81 satellite radio. She recounts her amazing story of perseverance in diagnosing and treating her son in her book Saving Sammy. Here she talks about her the battle in correctly diagnosing her son with Pediatric Autoimmune Neurppsychiatric Disorders Associated with Streptococcal Infections, known as PANDAS.
My middle son Sammy was twelve, just before the start of sixth grade, when he went from brilliant to unrecognizable in a period of less than six weeks. It started benignly. We were moving and Sammy was walking around with his eyes shut, his hands extended in front of him as if he were blind. “Memorizing,” he told me. I thought it made sense.
But there was no sense to be made of the next behaviors, all of which came at a fever pitch. He refused to sleep in his bed, shower, or change his clothes. In the sweltering heat of August, every window in our home had to be closed with every light blazing 24/7. He would eat only while standing up, and then he stopped eating entirely.
Sammy was diagnosed with obsessive-compulsive disorder. I wondered aloud to the psychiatrist how this could have come out of no where. Six weeks earlier he had been an enchanting, kind-hearted boy who liked nothing better than to wander the beach. He’d been a state-wide math champion. “It happens,” the doctor said. We diligently followed the medical protocol, increasing the SSRI (Zoloft) as instructed. But Sammy never got better. He only grew worse. He stopped walking and hopped everywhere instead. Lamps fell off tables and smoke detectors fell off the walls as he pounded his way through the house. We took down the clocks because he couldn’t stand the ticking. He twisted and jerked and sobbed and screamed. My brilliant sonwas unable to get out the front door.
The discussion with the doctor evolved to include Tourette Syndrome and a discussion of probable hospitalizations, when divine intervention presented itself in a phone call. “Have his blood tested for strep,” said the woman who called. She worked with my mother. And when we got the results, there it was in black and white: he had a bacterial infection raging through his system. At last we had the answer to the illness that had come out of nowhere. Sammy had Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (PANDAS). And for all those years, not a single doctor had wondered if Sammy might merely have caught something that caused his decline. With appropriate antibiotic treatment – four years on Augmentin XR – Sammy fully recovered. He is now a sophomore at Carnegie Mellon earning two degrees: one in mathematics and one in computer science. He takes no medication at all.
I got my son back, and I got my life back, too. But I couldn’t stop thinking about the tens of thousands of children and parents similarly affected who had no idea that the root cause of their agony might be a simple infection. So I wrote a book about our experience Saving Sammy: Curing the Boy Who Caught OCD, and I relentlessly advocate for awareness. If you have a child who has a mental health diagnosis, insist that the doctor rule out the possibility of an infection. It won’t be the answer in every case, but it might be for you. To order the book and learn more, visit my author website at www.savingsammy.net or email me with your questions. If I can help you, I will. For a list of the symptoms of PANDAS as well as information on support and research, visit www.pandasfoundation.org
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