Meet Sanjith, a young boy with autism who has an asoociated medical condition. To meet his unique challenges, Sanjith's parents, Prashanthi and Sudhakar Vankamamidi, recognize the importance of increased research and understanding within the medical community. They feel healthcare professionals must move beyond perceiving these challenges solely as behavioural concerns.
What are the related medical conditions that your child
has?
PANS(paediatric acute-onset neuropsychiatric syndrome)/PANDAS(paediatric autoimmune neuropsychiatric disorder associated with streptococcal infections along with ASD. Sharing a link to a guide on PANS.
How do these medical conditions impact your child’s overall health and well-being?
Sanjith, suddenly develops severe anxiety and OCDs.
Just a minute back, he would be perfectly fine. In a matter of seconds, he could
take on an entirely different persona. He sleeps for less than 3 hrs a day. His
eyes close for a split second during the day...that counts as a nap. He
wouldn't want to stay at home. He would seek constant movement, solace
in car rides. It takes months to get back to baseline. Food intake would be
very minimal. In addition to causing regressions and introducing new sensory challenges, each flare (flares are sudden exacerbations of symptoms) sets him back. It
becomes a relentless cycle of progress, followed by setbacks. Each flare leaves
its mark. The respite of six months free from flares was a period of remarkable
growth, emphasising the profound impact these co-morbidities have on his
development. At times, the burden of these medical complexities can make autism
itself seem more manageable.
Have you faced any difficulties in accessing
healthcare or accurate diagnosis for these medical conditions due to autism?
Yes ...most of the time, doctors just brush them
off as common symptoms. They don’t even listen to us completely. Like
recently, when he had a flare and was unmanageable, we had to rush to a famous
hospital in Hyderabad. Doctors just denied treatment. His heart rate was around
180. Still, they didn’t feel the need to physically examine him. Everything was
based on our input. They thought it would be a medicolegal case if they
admitted him. Unable to find help, we just relied on CAR THERAPY. (Moving around in
the car till he is better) Antibiotics help to a large extent but someone
should at least physically examine, right? The unwillingness to listen and
comprehend the complexities is disheartening.
Have you noticed any common misconceptions among medical professionals regarding autism and associated medical difficulties?
A lot. Most of them think that it is behaviour. They term it as hyper. But the truth is he is having some issue going on and doctors are just brushing it off. When we say it might be strep, doctors think otherwise. They have a notion that infection should manifest as high fever, runny nose, sore throat. Sanjith never has these book defined symptoms. Throughout this journey, we could find only one doctor (my childhood paediatrician) who said that there is some infection. This was during our starting phase of PANS/PANDAS (when Sanjith was 5yrs) He prescribed antibiotics and a single dose of it brought Sanjith back to normal. We were able to learn about PANS from him. While his dedication remains unmatched, he is limited by his age and unable to read up and help us further on this subject. It's been 9 years, but we're still unable to get competent help during emergencies.
What suggestions do you have for healthcare professionals to improve their support forindividuals with autism in managing their medical needs?
There are many increasing cases of PANS/PANDAS.
Parents who aren’t aware rush to the doctors for help. Instead of brushing
it as behaviour, please help and guide us appropriately. They should learn that
autism isn’t just behaviour. Even autistics have health issues. It's high time
to reconsider textbook definitions of autism.
What resources have been helpful to you in your
journey in addressing the associated medical conditions?
It is usually fellow parents who are facing the
same storm as us. There are a few biomedical doctors and homoeopaths who believe
in PANS/PANDAS. We try to get help from them. My husband is in charge of the
medications (mainly supplements), and he has been a great help to
Sanjith.
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