Mid-Day Special: Dr T Jacob John on early diagnosis, measles prevention and misdiagnosis

Dr T Jacob John is a globally recognised virologist and paediatric infectiousdisease specialist whose pioneering work in clinical virology has significantly shaped infectiousdisease research and prevention in India A former professor and head of clinical virology and microbiology at Christian Medical College Vellore Tamil Nadu he established Indiarsquos first diagnostic virology laboratory and made landmark contributions to the understanding of polio measles HIV and other viral diseases His work with colleagues also helped document the high incidence of Subacute Sclerosing Panencephalitis SSPE in South IndiaRead AlsoLiving with the consequences of a devastating measles complicationpopcorn number5 to 10 years descAge range when SSPE sufferers begin to show signs of deterioration classDefaultIn this interview the final part of middayrsquos ninepart series on SSPE Dr John reflects on the early recognition of SSPE its warning signs and diagnostic challenges and the critical importance of measles prevention He explains why unexplained developmental regression behavioural changes abnormal movements and seizures in a previously healthy child should prompt careful evaluation for SSPE He also discusses the need for stronger publichealth systems efficient referral mechanisms systematic disease surveillance and sustained immunisation efforts to prevent measles and its potentially devastating complicationsYou were among the pioneers in detecting and reporting SSPE in India What did those early cases teach us that parents and doctors still need to remember todayFirst our eyes do not see what the mind does not know Paediatricians and neurologists knew very little about SSPE because they tended to misdiagnose the disease Secondly if we have measles we will continue to have SSPE Thirdly laboratory diagnostic facilities should be available to all doctors as SSPE can be clinically suspected but laboratory help is essential to confirm the diagnosisWhat are the earliest warning signs of SSPE that parents could easily mistake for ordinary behavioural changes academic difficulties or psychological problemsMental changes are the earliest signals of SSPE Children developing well so far after five to 10 years of age begin to show signs of deterioration in cognitive development and school performance behaviour changes etc Then physical symptoms develop focal muscle weakness jerky movements and fits convulsions which clearly show that the disease is neurologicalRead AlsoHow measles can cause a fatal brain disease years after infectionIf a child begins losing previously acquired skills develops personality or behavioural changes abnormal jerks or seizures when should a paediatrician or neurologist actively suspect SSPEEvery child over five years showing any of the above must be suspected for SSPE and laboratory tests must be applied without delay Otherwise we tend to make a wrong diagnosis and mislead the parentsAre we still missing SSPE because children are initially diagnosed with epilepsy developmental disorders or psychiatric conditionsI have no recent experience but what you tell me clearly shows that in India SSPE still occurs and is often misdiagnosed until someone tests for the disease When seizures appear in a previously well child naturally epilepsy must be suspected but the possibility of SSPE must be considered earlier rather than later In India we have another disease not well described in textbooks because it does not occur in developed countries cerebral cysticercosis These two ailments must be considered by all cliniciansAfter a child has had measles is there any precaution that parents and paediatricians should consider because of the possibility of SSPE years laterMeasles is still common in India although very much lower than before In 2026 some 30000 measles cases have been reported and WHO has taken note of it However SSPE is so rare that there is no need to warn the parents about itRead AlsoThe measles that never really left How SSPE silently attacks the brain years laterHow early can SSPE be diagnosedBy the time any of the abovementioned signs or symptoms have developed the pathology in the brain is well established and a cerebrospinal fluid CSF measles antibody test will confirm or exclude the diagnosis Electroencephalogram EEG and cerebral scans are also helpful mdash but not necessary if the cerebrospinal fluid test is positive In India scanning will help diagnose cerebral cysticercosis which begins to show up in older childrenIs SSPE becoming less familiar to younger doctors because measles vaccination has reduced its incidence Could this success paradoxically contribute to delayed diagnosis when cases do occurYes indeed If the doctorrsquos mind does not alert him or her about SSPE the diagnosis will be delayed and in the meantime the doctor and parents go through a wild goose chase mdash until the penny drops or a consultant diagnoses with lab testsCan SSPE occur in a child who has received measles vaccination How should doctors explain such cases to parents without creating confusion or vaccine hesitancyIf the child had measles immunity due to vaccination they will not develop SSPE Vaccination is for immunisation but in India we hear a lot about vaccine failure where the jab is given but the child remains not immune Rabies is one example The vaccine could be without the required potency A quality vaccine wellstored under monitored refrigeration without breaks given in a twodose schedule is 100 per cent effective Several years later parents may have problems of recall so documented evidence is ideal Read AlsoBombay HC to hear PIL seeking support for SSPE patientsShould preventing measles be viewed as not only preventing an acute childhood infection but also a potentially devastating neurological disease years laterYes indeed India has a measles and rubella elimination programme mdash it must be activated and both diseases prevented to avoid the common postmeasles problems and the rare devastating complications mdash SSPE after measles and congenital rubella syndromeIf you could change one thing in the way paediatricians and neurologists evaluate a child with unexplained developmental regression abnormal movements or seizures what would it beWhen it comes to early diagnosis and prevention there is no one thing where one can make a change However disease prevention and health promotion to be functionally efficient and reliable require ldquohealth managementrdquo Developed countries without exception have a governmental division called lsquopublic healthrsquo The Union and state governments have programmes for treatment after falling ill but not for systematic disease monitoring and prevention They also have a vertical childhood immunisation programme which in all developed countries is a part of public health Vaccine delivery may be by healthcare personnel but the whole programme should be under a public health department to ensure that there are no gapsWhat is the one mistake a parent or doctor could make that might allow SSPE to go unrecognised until it is too lateEvery disease must be diagnosed at the earliest For that a functionally efficient ldquoreferral systemrdquo and ldquoauditingrdquo of clinical practice should be availableWhat is your one message to parents doctors and policymakers on preventing SSPE and ensuring that children with early symptoms are recognised and investigated promptlyThere is no magic gun systematic and systemic processes must exist so that misdiagnosis is avoided A rare disease is rare for everyone but for the affected family it is not rare any moreRead AlsoSeven children seven SSPE battles families left with debt grief and unanswered questions