Early Diagnosis Calms Acute OCD for Boy From India
Hear Gautam’s Story
The nightmare I still remember is the date in December 2020 when this medical disaster struck us. Gautam, my 12-year-old, a playful fun-loving child with a typical, healthy medical history.
He had a sudden change in disposition, panic attack accompanied by expressing guilt over a small occurrence at home. Guilt converted into OCD and in several days it became extreme, to a debilitating level hour after hour. He had a level of OCD that increased a million times.
For three months, he was under psychiatric medication for OCD treatment, but OCD only kept increasing many times over, and the psychiatrist even suggested that he may have “developed a resistant-to-treatment form of OCD.” He was having thoughts even while sleeping; he was extremely disturbed in his sleep and was afraid to be put to sleep alone. There was no part of the day which he could spend in peace. It was always surprising how overnight a very playful child who was always healthy and happy, slipped into this phase inexplicably.
PANDAS possibility and PANDAS Network
Meanwhile, a doctor had mentioned getting streptococcus blood ASO titer checked for PANDAS. The ASO titer was negative; then, he suggested it cannot be a case of PANDAS. But I remained intrigued, and I began to wonder about past infections that had occurred in the past few months. He had recently had a very high fever, throat infection, viral fever and stomach aches. In my search for answers, it was to my pure good luck that I landed on the PANDAS network site and was contacted by a volunteer who listened to the entire story. The volunteer felt quite confident that this was possibly PANDAS.
My tryst with the medical system
I went from one doctor to another, including neurologists and psychiatrists suggesting the possibility of PANDAs treatment, but for some reason, they all wanted to suggest that it was psychiatric-driven only rather than just trying a prescription of a simple antibiotic or anti-inflammatory like ibuprofen. Despite my explaining that this was a sudden onset with severe OCD and no relief from psychiatric medicines, they wouldn’t listen. I felt doctors just wanted to go simply by the book, rather than trying to explore real answers by looking at the latest PANDAS research. They seemed to give up on hope rather than making my child and his well-being the focus. The psychiatrists have just focused on their specialty and neurologist theirs.
Gautam on road to recovery
I explained to PANDAS Network and a U.S. doctor my entire journey. The U.S. doctor reviewed my son’s medical records and clinical presentation of sudden onset and explained that there was no definitive test for PANDAS but that it sounded neuro-immune. With this consult, a local doctor was willing to try antibiotics followed by a low dose of oral steroids for one week. On the seventh day of the steroids, Gautam was nearly okay. His good humor returned, the smile on his face, sleeping normally came back. The OCD that had ravaged so suddenly was also disappearing suddenly.
Since then, Gautam has been on a very mild dose of antidepressants to be sure to ward off OCD. He was weaned off of anti-anxiety medications and has been perfectly OK, returning to academics and friendships as before. As a mother, it is the greatest relief to see the child smiling and peaceful. I wonder and fret had I not discovered the PANDAS network and talked to the volunteer, we would have still been lost. The volunteer has been truly God-sent for us! It has been nothing short of a miracle.
I still get worried at times about the future and any relapse in the future. I pray there is hope for many kids like mine. And that they all get the treatment they truly deserve.