Aiden was born healthy in 2009. During the early years of his life, he had some developmental delays. He was a friendly, talkative, affectionate child with a big imagination and heightened aesthetic sensibilities. In 2016, he was diagnosed with high-functioning autism. We were told he was on the edge of the spectrum. Most people would not have suspected he was autistic. Everything changed one day in September, 2018. Suddenly Aiden was unable to answer simple questions. He stared blankly and did not seem to comprehend what was being said to him. This was followed by a sharp personality change and a cascade of new, strange, and troubling behaviors. His overall functioning began to decline. Throughout the fall of 2018, we were in and out of doctors offices and labs, searching for answers. The only definitive answer any doctor would give us is that it was all due to autism. We tried to accept our new reality, but Aiden's condition continued to deteriorate.
Aiden enrolled in a new school in 2019 and began Applied Behavior Analysis (ABA) therapy with terrific therapists who love Aiden. After working with Aiden for a while, they said that they sense that Aiden is dealing with more than autism, that "this is different." Aiden also has begun Occupational Therapy and is responding well.
Throughout this fall, Aiden became more withdrawn and communicated less and less, until the present time when he hardly talks to anyone at all. Many days, Aiden doesn't seem to know his own family.
In November, 2019, we first learned about Pediatric Autoimmune Neuro-psychiatric Disorder Associated with Strep, also known as PANDAS. As we began to learn about it, we were struck by how similar Aiden's symptoms are to those associated with PANDAS. We went back to our doctors to ask them if we should rule out PANDAS. Aiden underwent a series of blood tests and came back positive for a high level of ASO, a Group B strep antibody, a result consistent with PANDAS. He was put on antobiotics to deal wth the strep. We ended up seeing a new pediatrician in Tampa who has treated PANDAS. He recommended we continue with antibiotics for 3 more weeks. At the end of 3 weeks, Aiden had not improved much, and the doctor recommended we continue the antibiotics for 2 more weeks. In the meantime, we learned about Dr. Murtuza Kothowala in Orlando who is supposed to be an expert in PANDAS. After reviewing Aiden's medical history, he agreed to see Aiden on Wednesday, January 15th for an evaluation.
PANDAS and its cousin PANS are not well known in the medical community and it was just named a distinct disorder about 20 years ago. ABC's 20/20 did a story on it a couple years ago:
https://abc.com/shows/2020/episode-guide/2018-07/20-072018-pandasEven if this turns out not to be PANDAS, the portrait in the 20/20 piece is representative of our experience over these last 1.5 years. We are not doctors, but we strongly suspect that Aiden is suffering from PANDAS, PANS, or some kind of auto-immune encephalitis.
This has been a painful journey full of grief. We are completely dependent on God to lead us and to send us the help we need. Our whole family has been changed. Thank you for your concern and for going with us on the journey.
