A Scary Strep Onset Calms with Support & Guidance, Mothers Helping Mothers
Written by Sierra Gellhorn
A four-year-old boy (my son, Max) developed severe tics within a few days of being diagnosed with his second case of strep throat. He had also begun to exhibit sudden behavioral changes such as severe separation anxiety, insomnia, hyperactivity, and aggression.
My son’s PCP agreed with me that it was “very probable” my son was suffering from PANDAS syndrome, but stated he was not comfortable diagnosing him and didn’t know much about the illness itself or how it could be treated. We were given a referral to a prestigious hospital where the pediatric neurologist evaluated him via Zoom and spoke with me for two hours. She was able to effectively rule out brain cancer, encephalitis, and seizures without further testing; she also told me they did not diagnose or treat PANDAS.
It was obvious that possible PANDAS cases had come to her before, as she had compiled a list of MDs who treat PANDAS patients, all out of network. She said, with some deliberation, that the neurology team should get together and discuss PANDAS again to reassess the “illness legitimacy.” For my son, she treated him as she would any child with a simple tic disorder and offered a prescription for guanfacine or clonidine, which would basically sedate him. This was the only treatment offered.
My son is now on the path to recovery with a private physician who is helping us navigate this illness. There seems to be no clear roadmap in sight. Financially, it is stressful when forced to go out-of-network to seek effective treatment. Parents, of course, will do whatever they can to heal and protect their children. Hopefully, within a decade, the financial stressors for families can be removed with a modicum of international recognition.
The problem with not correctly diagnosing children with PANDAS is that the underlying issue of antibodies attacking the brain and causing inflammation is not addressed. I wonder how many other children are misdiagnosed? How many children do not get the care they need? And how can it be said that PANDAS is a rare illness when there are so few practitioners willing to even diagnose them? Why do the most prestigious hospitals and best medical personnel look the other way and act like their diagnosis is not real? How many children fall through the cracks of this system?
It is my belief and my hope that in twenty years, every acute behavioral change post-infection will be assessed for possible PANS or PANDAS, that these children will get the treatment they need to heal, and that they will not be left in limbo, with their caretakers watching them suffer, feeling helpless. It is my belief and hope that in twenty years we will look back and think, “How could the medical community have ignored this?” I hope one day soon, more doctors and medical institutions will consider PANDAS worthy of their recognition.
