FAQ’S

FAQ's - Epilepsy

1What should I do if my child gets seizures?
• Do not panic. Make him/her lie down on any one side.
• Remove all sharp objects/ glasses from surrounding. Loosen clothing.
• Time the seizure, keep emergency medicine ready
• Do not put anything in mouth till he is fully conscious
• Do not restrain forcefully, this may cause injuries.
• If possible video the event, especially if doctor has asked for it.
• In case the seizure goes on for 2-3 minutes, use emergency medicine prescribed by your doctor.
• If seizure continues despite the emergency medicine or the child suffers injuries or there is a long recovery time, take the child to the nearest hospital.
• Follow the plan given by your doctor like increasing medicine or doing blood levels in case of further seizures
2What are the different types of seizures?
There are two main types of seizure: focal seizures (sometimes called partial seizures) and generalised seizures. The manifestations of seizures can be varied and include:
• Sudden jerking and/or stiffening of the entire/one side of body
• Daydreaming/blank spells (absence seizures)
• Abnormal behaviour/ funny hand and lip movements
• Unusual sensations such as fear/ strange taste /odour, or a rising feeling in the stomach.
• Excessive startling
• Eye deviation to 1 side, inability to see
During a seizure, the patient may be aware of what is happening or may be unconscious. Seizures can occur in sleep as well as wake state. Patient may remain drowsy or feel exhausted or confused or complain of headache after a seizure
3What are common seizure triggers?
Common seizure triggers are forgetting to take your medicine, sleep deprivation, illness or severe physical/mental exertion.
4What if I forget to give the medicine?
Give it as soon as you remember. However if it is more than 6-8 hours past and the next dose time has arrived,you need not give the 2 doses very close as this can lead to side effects like excessive drowsiness.
5Should I take the medicine before or after food?
Medicines can be given anytime in relation to meals unless your doctor has specified. It is not always necessary to give medicines after meals exception being steroids.
6My child has put on weight. Should I increase the dose?
If seizures are well controlled, there is no routine need of modifying doses with weight change.
7Will my child sleep in school if I give medicine before the school?
For a couple of weeks on commencement of treatment, your child may sleep more but this side effect will go away with time.
8Can I give any other medicine if my child is on antiepileptic medicines?
Though most medicines can be given, you need extra caution when using certain antibiotics (Anti TB drugs, Erythromycin etc) along with enzyme inducing medicines (Carbamazepine, phenytoin, phenobarbitone)
9Can I change the medicine to another brand?
Ideally brands should not be changed due to varying bio availability which can at times trigger seizures.
10My child has got a rash after taking this medicine, what should I do?
You should report to the doctor immediately as certain medicines can cause severe allergic response which can at time be life threatening as well. A different medicine may be started.
11My child is on multiple drugs, can he take all together?
Medicines can be taken together. However to avoid excessive drowsiness, a few hours gap in between 2 drugs is advisable.
12Should I stop the medicine if fits are controlled for few weeks/months? Or will the treatment go on lifelong?
Even if seizures are controlled for few months, medicines need to be continued for 2 to 4 years or longer as advised by your doctor depending upon the underlying epilepsy syndrome/disorder. Exception can be in case of steroids. Lifelong treatment is not needed for all epilepsies with few exceptions.
13My child is on regular medicines but he is still getting seizures. What should I do next?
You need to consult your doctor as it is possible that either the dose is inadequate or a second medicine needs to be tried. A third of epilepsy cases do not respond to the first medicine and need to be tried on 2nd/3rd drug.
14Can I send my child for school trip when on anti seizure drugs?
Yes all activities including school trip should be allowed while on medicines. Extra care with close supervision should be taken for certain activities like swimmimg, cycling, trekking etc. It is best to inform your school and other care givers about his epilepsy.
15When should I come for follow up?
Depending on the severity of the seizures, follow up can vary from 15 days to 6 months as advised by your doctor.
16What extra care should I take for my child with epilepsy?
a. Ensure that he/she takes medicines regularly
b. An adequate sleep of 8-10 hours depending on age is essential.
c. Do not overprotect or restrict his activities/food habits. At same time, close supervision is needed for swimming, cycling and other risky activities.
d. Maintain a seizure diary for count of seizures, triggers and change in medicines.
e. Please keep the school and all care givers well informed about his epilepsy, emergency care plan and whom to contact in case of emergency.

How to pick up Autism Spectrum Disorder early

1What is Autism?
Autism is a developmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and by restricted and repetitive behaviours. These symptoms become evident before a child turns three years old. However, symptoms and their severity vary widely across the three core areas. Incidence of autism has been rising over the years. A recent report by Centers for Disease Control and Prevention says one in 68 U.S. children has an autism spectrum disorder (ASD), a 30% increase from 1 in 88 two years ago.
2What causes autism?
The exact cause of autism is not well understood but various genetic and environmental factors have been implicated. Autism affects information processing in the brain by altered connections and organization.
3Is autism inherited?
Both genetic and environmental factors have been implicated in autism though the exact genes have not yet been identified. Recurrence risk in identical twins is highest and there is increased risk upto 5-10% in siblings of affected child (more if girl child) according to various studies. Family members of an autistic child may show minor difficulties in social interactions and communication.
4How is autism picked up early?
If any of these red flags are present, please get your child evaluated immediately.
• No social smile or other joyful expressions by six months or thereafter
• No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
• No babbling by 12 months
• No pointing, showing, reaching or waving by 12 months
• No words by 16 months
• No meaningful, two-word phrases (not including imitating or repeating) by 24 months
• Any loss of speech, babbling or social skills at any age
The earlier a child is diagnosed with autism, the better their chances of overcoming the difficulties that come with the disorder.
5What other problems can occur in autism?
Gastrointestinal discomfort is common and affects up to 85 percent of children with ASD. This can be chronic constipation or diarrhea or inflammatory bowel disease. Epilepsy occur in as many as 20-40% percent of those with autism.
• Sleep problems are common among children with autism and may likewise affect many adults.
• Sensory issues are common in children with autism.
6Is autism treatable?
Early intensive behavioral intervention improves learning, communication and social skills in young children with autism spectrum disorders (ASD). It is not a cure, but it redirects the trajectory. If the person with autism learns to communicate what he or she wants, challenging behaviors often subside. Medications can also be given for hyperactivity, depression, anxiety and obsessive compulsive disorder. Epilepsy can be treated with antiepileptic drugs. Dietary modifications have been found useful in a subset of children who have allergic tendencies with food items.
Though autism spectrum disorders range from mildly to profoundly disabling, a diagnosis of ASD is an important turning point in a long journey.
Where can I find more information about autism?
www.autism-india.org
www.autism.com
1Can children suffer from headaches?
Children including infants can get headaches. 2/3 of childhood population is reported to have one or more headaches in a year. 1/4 of adolescents may get weekly headache.
2What are common causes of headache in children?
• Common causes of headaches in children are migraine and tension type headache.
• Rare causes can be due to brain infections, tumors, raised intracranial pressure, head trauma, vasculitis etc
3What are the symptoms of migraine?
• Pulsating, throbbing headache lasting 30 min to 72 hour.
• Pain that worsens with activity, moderate to severe intensity
• Associated Nausea or Vomiting or Abdominal pain
• Extreme sensitivity to light and/or sound or odour
4What are common triggers of migraine?
• Dark Chocolates, Chinese Foods, Coffee, Nuts
• Lack Of Sleep / Rest
• Excessive Emotional/Physical Stress
• Sunlight, Strong Scents/Loud Noises
5What are the danger signs in headache?
Headache associated with any of the following can be dangerous and needs a detail evaluation
• Explosive onset headaches
• Headaches in early morning or middle of night
• Persistent vomiting, Behaviour change or drowsiness
• Balance issues
• Recent onset squint / double vision
• Seizures
6When should you do CT/MRI brain in headache?
Any atypical headache as mentioned in the previous question may need a neuroimaging after discussion with your neurologist
7Can my child with headache have brain tumor?
Probability of brain tumor is low except if the headache is associated with any of the above mentioned symptoms(answer 5). 88% of tumour-related headaches are associated with other clinical features
8How do you treat headache? Can you treat without medicines?
• Regular medicines are not always required for treating headaches. Various preventive strategies can help control symptoms in many. (see next answer)
• However if frequent debilitating headaches occur causing school absenteeism, occurring more than 2-3 per week, regular preventive medications like flunarizine, topiramate, amitryptilline, divalproex and propranolol may be given for 3 to 6months duration.
• For rescue therapy during an attack, your doctor may prescribe drugs like naproxen, paracetamol, ibuprofen or triptans which are effective early in the headache but should not be used more than 2-3 times in a week.
9How do you prevent headache?
• Ensure adequate rest and sleep – set a consistent sleep schedule
• Do not skip meals, especially breakfast.
• Keep regular meal timings. Drink lot of water
• Exercise regularly
• Use caps and sunglasses in direct sunlight
• Limit stress
• Keep headache diary – record all things done, eaten, felt and sleep pattern 24 hours prior to a headache episode to identify your triggers and avoid them.
10How often can you use painkillers? Are they safe in children?
• Not more than twice in a week. Too much use of painkillers can cause medication overuse headaches. Some painkillers can be toxic to your liver and kidneys and can also cause gastritis.
11What is the long term outcome in headaches?
• Most benign headaches go away with adequate preventive treatment while others may subside with a short duration of medications. For some children, counselling and a psychological evaluation may also be required.

What is Learning Disability (LD)?

Childhood is a critical period for learning and knowledge attainment. A child’s education is essential to integrate him in a society. Some children struggle in school academics and may have trouble keeping up with peers despite a normal intelligence due to learning disabilities (LD). This can affect their self-esteem and motivation and lead to long term social and economic problems. Healthcare and educational professionals must identify children at risk, guide the family and refer them to appropriate rehabilitation program. Timely and appropriate interventions can alter the outcome significantly.

1What is LD?
Learning Disabilities (LD) refers to a neurodevelopmental disorder that impedes the ability to learn or use specific academic skills (e.g. reading, writing, or arithmetic), which are the foundation for academic learning in combination with otherwise average abilities for thinking and reasoning. Learning disabilities are distinct from intellectual disabilities. For LD diagnosis, the child should have normal intelligence, absence of sensory impairments (hearing and/or visual deficits), emotional adjustment, and access to appropriate education. Learning disabilities range in severity and invariably interfere with the acquisition and use of one or more of the following important skills:
• oral language (e.g., listening, speaking, understanding)
• reading (e.g., decoding, comprehension)
• written language (e.g., spelling, written expression)
• mathematics (e.g., computation, problem solving)
2How common is it?
LD affects 5% to 17% of the population. It is more frequently found in boys in a 1.5:1 ratio. However, its effects may be expressed differently over time, depending on the demands of the environment and the individual’s characteristics. Very often all three coexist. • Dyslexia or specific reading disability corresponding to 80% of all LDs and is characterized by difficulty reading due to problems identifying speech sounds and learning how they relate to letters and words. It is the commonest form of LD. • Developmental dyscalculia or mathematics disorder corresponds to 6% of LDs. It occurs equally in both genders, in contrast with the other LDs • Written expression disorder can impair the script (dysgraphia) and/or spelling and text production (dysorthographia). This corresponds to 8% to 15% of LDs. It can result from motor, spatial perception, and language changes, as well as from memory and attention changes.
3Who is at risk?
LD has a neurobiological origin with strong genetic inheritance, but it is modulated by environmental factors. There are several genetic studies in progress, as family history is considered the most important factor in dyslexia.
4How do parents suspect LD early?
Though early intervention is beneficial for dyslexia treatment, it's never too late to seek help. Some early cues for LD according to age of child are:

Preschool
• Late talking
• Learning new words slowly/ limited vocabulary
• Difficulty playing rhyming games
• Difficulty learning nursery rhymes
• Difficulty in recognizing symbols (letters and numbers)
• Difficulty in naming and telling stories again

School age
• Reading well below the expected level for age
• Problems processing and understanding what he or she hears
• Difficulty comprehending rapid instructions
• Problems remembering the sequence of things
• Difficulty seeing (and occasionally hearing) similarities and differences in letters and words
• Inability to sound out the pronunciation of an unfamiliar word
• Difficulty spelling
• Trouble learning a foreign language
Teens and adults- Dyslexia symptoms in teens and adults are similar to those in children.
5What are the comorbidities?
Attention deficit hyperactivity disorder can affect 25% to 40% of patients which causes difficulty sustaining attention as well as hyperactivity and impulsive behavior. This can make dyslexia harder to treat. Speech delay is often seen in these children.
6How Do You Confirm The Diagnosis?
Learning disabilities can be identified by psychiatrists and clinical psychologists through a combination of intelligence testing, academic achievement testing, classroom performance, and social interaction and aptitude. The resulting information is used to determine whether a child's academic performance is commensurate with his or her cognitive ability. If a child's cognitive ability is much higher than his or her academic performance, the student is often diagnosed with a learning disability. Many comprehensive achievement tests measure various academic domains that are reliable in identifying areas of difficulty.
7What are the long term complications?
If left untreated, LD can lead to a number of problems, including low self-esteem, behavior problems, anxiety, aggression, and withdrawal from friends, parents and teachers. The inability to read and comprehend can prevent a child from reaching his or her potential which can have long-term educational, social and economic consequences.
8What is the treatment?
There's no cure for dyslexia. Remediation and accommodation are the mainstay of treatment. Most children with dyslexia can succeed in school with tutoring or an Individualized Education Plan (IEP) according to his needs. Emotional support also plays an important role. Remediation aims to seek decoding training, reading fluency, vocabulary and comprehension acquisition. Many children will not reach reading proficiency and, in these cases, accommodation will be required. Accommodation includes extra time for reading (essential), use of computers and recorders, and avoidance of multiple choice questions, oral tests, and/or separate classrooms. Co-existing ADHD can be treated with behaviour therapy and medications.

What is Cerebral palsy?

Cerebral palsy (CP) is a non-progressive disorder of posture and movement due to injury to the developing brain.

1How common is CP?
Cerebral palsy (CP) is the most common motor disability in childhood. Worldwide prevalence is 1.5-2.5 per 1,000 live births. Full extent may not be visible till 3 to 4 yrs age.
2What causes cerebral palsy?
Abnormal brain development or injury to the developing brain can cause CP. Certain risk factors that can increase a child’s risk of developing cerebral palsy includes birth asphyxia, premature birth, maternal infections during pregnancy, infantile illnesses or stroke, low birth weight, multiple babies (twins or triplets), Rh blood group incompatibility and severe jaundice after birth.
3What are the different types of CP?
Spastic and dykinetic CP are the commonest. Children with spastic diplegia have predominant walking difficulty with increased tone in the legs causing scissoring whereas children with Spastic quadriplegia have more severe problems preventing them from walking/sitting or using their arms and hands effectively. They may have problems in feeding, swallowing, speaking and understanding. Children with dyskinetic CP have trouble controlling their body movements which causes involuntary movements in the arms, legs, and face. Most children have a combination of symptoms from the different types of CP
4When should you suspect CP early?
Neonatal problems like seizures, ventilation, feeding issues
• Scissoring of legs
• Delayed head control
• Delayed focusing or social smile
• Early handedness – prefers to use one hand each time to grab objects
• W - sitting
• Long feeding times and excessive drooling
• Excessive crying or lethargy
5What are the associated problems in CP?
• Feeding problems- frequent vomiting / aspirations/constipation
• Speech impairment
• Epilepsy
• Intellectual disability
• Visual and Hearing concerns
• Sensory issues
• Behavioral disorders
• Nutritional deficiencies
• Bone problems including fractures, dislocations
6What tests are required to confirm the diagnosis?
• Developmental screening tests at specific intervals by a pediatrician or specialist to pick up early signs
• Vision and hearing assessment
• Neuroimaging(MRI brain) in doubtful cases
• Hip Xray- to look for dislocation which is common in these children
7Is CP treatable?
There is no cure for cerebral palsy. However with the help of physiotherapy, medications, surgeries and assistive technologies, functional improvement may be achieved in many patients
8Can my child go to school? Would they need special care in school?
Milder CPs like hemiplegic and diplegic CP may be intellectually normal and can go to normal school with extra help. Others may need special education programs and computers and audio-visual aids. Special schools may be an option in more disabled patients. Accommodations at schools, such as wheelchair ramps, CP chair, In-school services such as counseling and therapy resources may be a great help.
9What is the outcome of CP?
CP can cause disabilities ranging from mild to severe and a number of seemingly unrelated complications. Because of these variations, the outlook or prognosis is different for every individual diagnosed. Some may live their lives with very few limitations with an average life span, while other children face more challenges and experience health complications that lower life expectancy.


1What is muscular dystrophy? How common is it
Muscular dystrophies are genetic muscle disorders which cause progressive weakness and wasting of muscles. Duchenne muscular dystrophy (DMD) is the commonest MD in children(1 in 3500 males), congenital muscular dystrophies in infants and limb girdle muscular dystrophy in adult
2What are the early symptoms?
Symptoms are seen in early childhood or later as
• Delayed walking
• Frequent falls
• Difficulty getting up from sitting/lying or climbing stair
• Difficulty raising hands
• Trouble running and jumping
• Waddling gait or toe walking
• Muscle cramps
3What age group is affected by MD?
Duchenne MD usually presents at 4-6 yrs of age. Milder forms like Becker’s MD can present late in second decade of life or later. Congenital muscular dystrophies present in infancy. Limb girdle dystrophies have a variable age of presentation from childhood to adult.
4What causes muscular dystrophy?
Certain genes are involved in making proteins that protect muscle fibers from damage. Muscular dystrophy occurs when one of these genes is defective. Each form of muscular dystrophy is caused by a genetic mutation particular to that type of the disease. Many of these mutations are inherited. Duchenne muscular dystrophy is caused by changes (mutations) of the dystrophin gene on the X chromosome and affects only males. Some limb girdle dystrophies are common in certain communities like Agarwals in India.
5How do you confirm your diagnosis?
When symptoms and signs suggest MD, the first screening test done is a blood test for creatine kinase (CK), an enzyme that is found in abnormally high levels when muscle is damaged (usually in the thousands or ten thousands range). Molecular genetic tests can confirm the subtype of MD once CK is high. They help in identifying specific genetic mutation including deletions, duplications or single point mutations. If the genetic tests are not informative, biopsy of the affected muscle may reveal characteristic changes.
6What are the complications of MD?
Patients with MD may develop cardiac and respiratory muscle weakness with time which leads to recurrent pneumonias and heart failure. They also develop multiple contractures, scoliosis of spine and various deformities of limbs and trunk. If on long term steroids, children also develop osteoporosis, cataracts and significant weight gain.
7Is MD treatable?
Though no curative treatment is available as yet, oral steroids have been found to halt the relentless progress of the DMD for some time. Two common corticosteroid drugs used to treat individuals with DMD are prednisone and deflazacort . Other supportive treatment options include physical therapy and active and passive exercises to build muscle strength and prevent contractures. Surgery may be recommended in some patients to treat contractures or scoliosis. Braces may be used to prevent the development of contractures. The use of mechanical aids (e.g., canes, braces, and wheelchairs) may become necessary to aid walking (ambulation). Trials of exon skipping, losartan and gene therapy etc are under way for DMD abroad and at certain centres in India. In 2016, Exondys 51 (eteplirsen) injection was FDA approved to treat DMD and is the first drug approved for this condition. Exondys 51 is specifically indicated for patients who have a confirmed mutation of the dystrophin gene amenable to exon 51 skipping, which affects about 13 percent of the population with DMD.
8What is the outcome?
Outcome depends on the type of MD. Some people with MD enjoy a normal life span with mild symptoms that progress very slowly; others experience severe muscle weakness and wasting, dying in their late teens to early 20s.
9Can MD be prevented?
Prenatal diagnosis is possible to prevent another child in a family with known MD if genetic defect is known. This can be done in first 3-4 months of pregnancy by testing the fetus for the known gene defect. Sisters and mothers of a patient with DMD can be tested for carrier status for the defective gene.