Covid-19 pandemic has adversely affected all spheres of life, including healthcare for people with medical conditions. Occupational therapy, physiotherapy, speech therapy, psychological counselling and behaviour management, among other methods, are necessary for those diagnosed with cerebral palsy to enhance their lifestyles. However, with the lockdown necessitated due to the pandemic, therapy centres have been closed and many children with cerebral palsy are needing immediate surgeries due to the deteriorating lifestyle, say experts.
Shreesh Kulkarni, 15, had been diagnosed with cerebral palsy when he was one-and-a-half years old. “He has been taking occupational therapy, physiotherapy since many years. “Therapy for him is as important as breathing,” says his mother Shreya Kulkarni. Due to the lockdown their visits to the centres are now restricted and hence, they have now opted for recreational therapy at home and have limited their visit to the doctors.
“It has been around six months since our last visit to the therapy centre. It has been two weeks since my child started visiting a physiotherapist. It was a challenge for us to keep him active by using therapy techniques at home. We also had to ensure that he does not gain weight. It was not only us, but many parents found it a challenge to keep our children active through different activities and exercises. If we do not keep our children mobile, there are chances of complications,” added Shreya.
Experts believe that they are now recording many such cases where urgent surgeries are required to avoid any further complications which were earlier under control due to therapy. Parents, too, have opined that the lockdown has hit them hard as they have not been able to take care of the kids who need special care. Therapy centres provided routine care ensuring that complications are prevented and surgeries are avoided.
“For a child with cerebral palsy (CP), parents are always the primary caregiver. When therapy centres were closed, the parents have performed the role of the therapist. Because of the lack of routine care, we are seeing complications in CP children. Parents should learn some basic techniques that allow the muscle to stay elongated, that allow for strength maintenance. Parents should now avail video consultations so that they can learn these techniques,” said Dr Saloni Raje, a paediatric neurodevelopmental therapist at a private hospital
However, not all parents could find such a solution for their children and had to face serious consequences. Before the lockdown, five-year-old Aayush Agashe (name changed), could walk on his feet slowly. Doctors were hopeful of his recovery with stretching therapy, Botox injection, and plastering of his feet. But during the lockdown, there was no therapy, and injection was not given. Instead, his increased height during these six months which led to stiffening of the muscle. Now, it is not injection or therapy that is of any use to him and he has to undergo surgery.
Dr Sandeep Patwardhan, a paediatric orthopedic specialist at the Sancheti Institute of Orthopaedics and Rehabilitation, said, “We are soon planning for Aayush’s surgery. It is not just him, but there are many CP kids whose surgeries could have been avoided or complications prevented if they were able to get uninterrupted access to therapy centres. But with therapy centres remaining shut during the lockdown, we have started seeing many cases with severe complications.”
World Cerebral Palsy Day is marked on October 6 every year to create more awareness it. The American Centre for Diseases Control (CDC) describes cerebral palsy (CP) as a group of disorders that affect a person’s ability to move and maintain balance and posture.
Dr Patwardhan adds, “CP is a lifelong disease. The main treatment for CP is going to be muscle strengthening, loosening of the tight muscle, wearing graces, and making sure that the child does activities. Otherwise, the child may end up with deformities, and then they may require surgery. Because of the lack of access to therapy centres, this continuous treatment has stopped. We need to make sure that CP kids get access to therapy centres. At least some assessment should be done at these centres regularly. Things like video consultation should be used. In chronic illnesses like CP, if left untreated, the complication rate is going up. The need for intervention and surgery will be very high in a few days if people do not visit therapy centres or experts.”
Therapists, who provide routine care at these centres are also seeing a rise in complications. Dr Sourabh Sane, physiotherapist at HealYos Physiotherapy, said, “In a seven-year-old kid, the hip joint had moved from its place. Doctors had planned to plaster it. But, there was no therapy given in all these months during the lockdown. Now, the hip has been dislocated and the kid will have to undergo a major operation to fix it. We are seeing many such cases where complications have emerged because of lack of routine care which had been provided by therapy centres. We are seeing cases where tightness of muscle has increased. Though patients have started returning now, it is still difficult for CP children from semi-urban or rural areas to approach such centres.”
Though these therapy centres are reopening, many parents still do not feel safe while taking kids to these centres due to the fear of Covid-19.