This neuro disorder is observed only in girls, 1 among 10,000 children
SRCC Children’s Hospital along with Indian Rett Syndrome Awareness Foundation and Parents Support Group of Delhi, for the first time in Mumbai, conducted a mega awareness seminar among parents on Rett Syndrome (primarily a neuro development disorder found prominently among girl children). Over 30 children suffering from Rett Syndrome and over 150 parents pan India attended the interactive panel discussion with Doctors and Experts, many of them coming from Delhi.
Commissioner of Police, Mumbai, Shri Dattatray Padsalgikar was the Chief Guest for this event. Specialists doctors (Brig.) Dr K. S. Rana (Delhi), Dr Anaita Hegde, Dr Shiraz Vazifdar, Dr Mala Jagtiani, Mrs Roshan Kore, spoke on various topics related to Rett Syndrome.
Dr Sonu Udani, Director Pediatric Care, SRCC Children’s Hospital, managed by Narayana Health, said, “Parents knowledge and support to these children are essential, they need to understand that such children (mostly girls) suffer from physical growth, hearing and vision problems, balancing problem, seizure’s etc and take necessary steps to manage them. Over a year, the child shows autism symptoms and this disorder generally develops after the child is 2 years of age and in few cases, symptoms are observed even after the child is 1 year old. Around 1 in 10000 girls suffer from this syndrome.”
SRCC Children’s Hospital managed by Narayana Health at Haji Ali Park, offers an exclusive super-specialty consultation with a holistic approach and in a child friendly manner. SRCC Children’s Hospital brings together this expertise under one umbrella to provide much needed care in a state-of-the-art facility.
The hospital is a state of the art multispecialty tertiary care hospital dedicated to treating infants, children and young adults. This facility provides cutting-edge super specialists medical care in over 20 specialities.
Some of the key takeaways from the Seminar:
- Rett syndrome (RS), one of the commonest causes of profound cognitive impairment in girls and women, was first recognized in the 1960s and the first report from India was in 1994. Though RS has a prevalence of 1 per 10000 to 1 per 22000 in India it is confined to very few case reports. This may be related to under diagnoses of the condition or misdiagnosis of these children as cerebral palsy or autism.
- There is not medical cure available today on this disorder and medical trials are in process at various medical institutions and research centres in India, USA and Europe
- Over 30 Rett Syndrome disorder children and 150 parents from Pan India attended the awareness seminar
- Parents Support Group (Delhi) was representing the parents of the children suffering from Rett Syndrome
- Parents express the challenges to deal with such children and the efforts they have been taking to give best possible medical aid to their children
- Mostly girls are found with Rett Syndrome disorder and every 1 girl on 10,000 across the world is found with this disorder
- Some Common signs and symptoms of Rett syndrome:
o Slowed growth. Brain growth slows after birth. Smaller than normal head size is usually the first sign that a child has Rett syndrome. It generally starts to become apparent after 6 months of age. As children get older, delayed growth in other parts of the body becomes evident.
o Loss of normal movement and coordination. The most significant loss of movement skills (motor skills) usually starts between 12 and 18 months of age. The first signs often include a decrease of hand control and a decreasing ability to crawl or walk normally. At first, this loss of abilities occurs rapidly and then continues more gradually.
o Loss of communication and thinking abilities. Children with Rett syndrome typically begin to lose the ability to speak and to communicate in other ways. They may become uninterested in other people, toys and their surroundings. Some children have rapid changes, such as a sudden loss of speech. Over time, most children gradually regain eye contact and develop nonverbal communication skills.
o Abnormal hand movements. As the disease progresses, children with Rett syndrome typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping or rubbing.
o Unusual eye movements. Children with Rett syndrome tend to have unusual eye movements, such as intense staring, blinking or closing one eye at a time.
o Breathing problems. These include breath-holding (apnea), abnormally rapid breathing (hyperventilation), and forceful exhalation of air or saliva. These problems tend to occur during waking hours, but not during sleep.
o Irritability. Children with Rett syndrome become increasingly agitated and irritable as they get older. Periods of crying or screaming may begin suddenly and last for hours.
o Abnormal behaviors. These may include sudden, odd facial expressions and long bouts of laughter, screaming that occurs for no apparent reason, hand licking, and grasping of hair or clothing.
o Seizures. Most people who have Rett syndrome experience seizures at some time during their lives. Symptoms vary from person to person, and they can range from periodic muscle spasms to full-blown epilepsy.
o Abnormal curvature of the spine (scoliosis). Scoliosis is common with Rett syndrome. It typically begins between 8 and 11 years of age.
o Irregular heartbeat (dysrhythmia). This is a life-threatening problem for many children and adults with Rett syndrome.
o Constipation. This is a common problem in people with Rett syndrome.
- This syndrome is observed due to any faulty DNA combination at the time of a child’s development before its birth
- Frequent urination, breathlessness, breathing related attacks, fits, anxiety and mood swings, sweating or body becoming cold are some of the common autonomic disturbances observed in such children.
- There could be development delays observed in such children like balancing, walk, speech, sight etc
- It has been observed through experience of doctors and specialists that Music Therapy, Physio Therapy or Parents involvement in any games/ play can help such children to curb their anxiety and calms their mood
- Parents positive attitude and patience towards treatment of these children
- Injectable or oral medicines can be given to menstrual issues of the girl child. Over the period with proper consultation of Gynaecologist and with a thorough understanding and consent of parents, a hysterectomy surgery can be done
SRCC Children’s Hospital, managed by Narayana Health, is a multi-speciality hospital exclusively for children. Of the 207 beds currently operational, 87 have been allocated for Multispecialty Critical Care covering new-borns to adolescents.
It has taken critical care to a higher level with the concept of Level IV care where a qualified team of Paediatric Intensivists will be able to provide Emergency Life Support (ELS) for children with failure of their vital organs including heart, lungs and kidneys. Also available are a team of specialists in Cardiac sciences, Neurosciences, Hematology- Oncology, infectious diseases, Endocrinology, Orthopaedics, ENT, Gastroenterology, diagnostics services and nephrology amongst others.