One fine morning, after his breakfast, Sanjith left for his Centre. After two hours, I get a call from Centre In-charge that Sanjith isn’t well and he is continuously visiting toilets. Within two hours, he went for 17 times!!! I rushed to pick him up, went to give urine test and the report was normal. He was continuously going to toilets, doesn’t want to stay at home and was hardly sleeping. We had to take him to a famous children’s hospital in Hyderabad. After all the explanations and urine test, they concluded that it is a “Behaviour” issue. With nothing much to do or say, we returned home. But his so-called behaviour was not coming under control. This is not the first instance. One such episode happened when he was four year old. We had to change the state for few days.
Unable to see his plight, my dad took us to my childhood pediatrician. He didn’t take much time to tell us that there is some infection. He gave antibiotic and an allergy medicine. Hesitantly, we administered antibiotic. And boom! Sanjith was just normal the next day. All his so-called behaviours vanished overnight. We were surprised and relieved at the same time. Upon reading few things and talking to few parents, we understood that his condition is called PANS(Pediatric Acute-onset Neuropsychiatric Syndrome)/PANDAS(Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
There will be sudden onset of OCDs, anxiety and sleeplessness. I remember we were going to Munnar by bus. Bus was in the evening at 4pm. Sanjith had a nap at home. After he woke up, he started crying suddenly; didn’t want to board the bus(he was used to bus travel before) and with lot of difficulty we boarded the bus. He was anxious throughout the trip and always wanted us to carry him. He was 4.7yrs at that time. All these episodes started making sense to us.
There were many episodes in our 13yr journey. Nine out of 13 years went into battling PANS/PANDAS. Most of the times, we see Urine Infections. Sometimes, even dental issues cause these episodes. Every episode or flare, would leave it’s mark either sensory wise or OCD wise. To get back to normal sleep, it would take months. His learning is like one step forward and two steps backward. Most of the times, we had to start all over again. He would lose his sitting tolerance as OCD take precedence. Few motor skills are lost. His reading ability started regressing. Few OCDs become habits too which is the toughest part. He would get sensitive to light or textures. By the time we start settling, another one is on its way. After a flare which happened around one year back, he wants to wear a particular colour pant. Recent flare, he lost his entire sitting tolerance. Reworking every time is bit discouraging but we can only keep trying.
Inspite of all this, Sanjith is a fighter and is continuously inspiring everyone around him. He has co-authored “Talking Fingers” along with sixteen non-speaking kids around India.
There are many kids like Sanjith. Few of us (parents) connected and try to support each other. But most of the parents are ignorant to these conditions. Although few doctors are aware, they take conventional route of giving psychotic drugs. Some just put it under the blanket of “behaviour”.
I would not like to say that there are no behaviours but even with repeated intervention, if it is not coming under control, we need to look beyond behaviour. Just a simple question-“How can a kid who was quite normal till an hour ago, suddenly get so anxious and restless?”
Here are few links which might be helpful-
Kindly note that this blog doesn’t suggest a cure or treatment plan. It is just for the information purpose for the parents to understand the condition.
Author Prashanthi Vankamamidi
(Parent mentor, OPT level 1 certified)
Creative representation for this blog is done by our extremely talented CreativeSaathi associate Dhrov Tikoo
2 replies on “Looking beyond Behaviours”
Good information for the parents
Thanks for sharing your experiences Prashanthi… It will surely benefit other parents and give a chance to think beyond behaviors…