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Doctors chart rare nerve disorder cure

When five-year-old Akash Poddar was admitted to Bhagirathi Neotia Woman & Child Care Centre (BNWCC), he was in a state of generalised paralysis. The boy couldn’t stand or move, talk or swallow and had difficulty in breathing.

Unable to detect the cause of this sudden paralytic condition, doctors in Basirhat village from where Akash hails, referred him to teaching hospitals in the city. But his uncle, a small-time security guard, and father were at their wit’s end when he was refused admission in several city government hospitals.

Eventually, Akash was admitted to the paediatric intensive care unit (PICU) of BNWCC. “The child was drowsy, unable to sit, could not even swallow water and had difficulty in breathing because of neuromuscular weakness,” recounts neonatologist and paediatrician Ashok Modi.

The weakness became worse over the next few hours with his breathing becoming ineffective. He had to be put on an artificial ventilator for six days. During this period, his heartbeat became irregular and he even suffered a brief cardiac arrest (acute ventricular tachycardia).

But the PICU team succeeded in resuscitating Akash and conducted an MRI scan of his brain. “Our initial clinical suspicion of ADEM (acute disseminated encephalo-myelitis) was confirmed. It’s a very rare inflammatory condition of the brain, presumed to be triggered by some undetected infection. In a UK neurology centre, the incidence won’t be more than two to three cases a year,” says Modi.

Chandan Ray, consultant paediatrician at BNWCC, concurs that ADEM is “very rare” even in India. “It is an acute disease of the central nervous system in kids of unknown etiology, not yet well-described in paediatric textbooks. It presents itself suddenly with diffuse neurological signs and symptoms suggesting widespread involvement of different parts of the nervous system,” Ray explains.

Even though the line of treatment is not well-established, once diagnosed, ADEM is generally managed with steroids or intravenous gamma globulins. Akash was not responding to steroids and had to be injected with immuno-globulins. “It’s an expensive choice as each shot costs around Rs 10,000, and Akash’s was not a well-to-do family. But the hospital stitched together some amount by way of donations and we could go ahead with the therapy,” says Modi.

Although the child is back home, there is a “five to 10 per cent” chance of a relapse, say doctors, who hope their experience in treating this “extremely rare” nerve disease could provide valuable inputs for city colleagues. “ADEM could also be the starting point of an inflammatory condition of the brain and nervous tissue,” says Modi.

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