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It is common for a parent to experience feelings of frustration, grief, anxiety and helplessness when the child has been diagnosed with epilepsy. Learning about epilepsy can empower you to make informed decisions regarding issues such as medical treatment, other non-medical options of epilepsy treatment including ketogenic diet and surgery.

In addition to the questions addressed below, please also consult the webpage of the Epilepsy Foundation (New York) for additional reading, which addresses several queries and concerns of Epilepsy with special reference to developmental disabilities – http://www.efmny.org/faq/epilepsy-and-developmental-disabilities/

How to identify a seizure?

  • In babies; clusters of bowing or bending movements when the child is sitting or clusters of grabbing movements with both arms while baby is lying down, episodes of jerking, stiffening of limbs on one or both sides, deviation of eyes or neck on one side In children.
  • Repeated jerking movements of the body, arms or legs
  • Periods of lack of response/loss of awareness that may appear like daydreaming
  • Sudden jerks which may be associated with falls
  • Sensation of stomach pain followed by confusion with or without jerking movements
  • Brief periods of fear, panic or anger without apparent reason or things tasting, smelling looking or feeling strange.

What causes a seizure?

The brain is made up of billions of nerve cells or neurons that communicate through electrical and chemical signals. When there is a sudden excessive electrical discharge, disrupts the normal activity of the nerve cells, resulting in change in function or behavior, known as seizure.

What is the difference between epilepsy and seizure?

Generally speaking, epilepsy is a condition with 2 or more unprovoked seizures. Often, ‘provoked’ seizures occur due to fever or low blood glucose or abnormality of electrolytes, which are not included in epilepsy.

How is epilepsy diagnosed?

Epilepsy is primarily a clinical diagnosis. investigation’s are performed to support the diagnosis of epilepsy and diagnose specific epilepsy . EEG is performed to find out electrical activity in the brain, specific EEG patterns can help determining the type of epilepsy. Furthermore, a video-EEG, wherein the clinical event of suspected seizure is recorded simultaneously with EEG can be helpful. More importantly, a normal EEG does not rule out epilepsy. MRI Brain is done to find out if there is any structural problem in the brain. In epilepsy which is believed to be arising from one particular location in the brain, additional tests like PET and SPECT can be done. Genetic tests for specific genetic defects responsible for epilepsy and metabolic disorders are done in relevant cases.

How is epilepsy treated?

Pharmacotherapy (Medicines) is the mainstay of treatment. There are several medicines available for seizures. The choice of particular medicine for a particular child depends upon the type of epilepsy, age and expected side effects. So it is very important that the epilepsy is accurately diagnosed as some types of anti-seizure medicines may be harmful in certain epilepsy types. Apart from medicines, certain complex epilepsy types can be managed by special diets like ketogenic diet. Moreover, there are other options also like vagal nerve stimulation and epilepsy surgery available for relevant cases.

Is epilepsy only about seizures? What are the associated problems seen commonly?

Actually, epilepsy is much beyond only seizures. Epilepsy often has associated problems like intellectual disability, behavioural problems, sleep disorders, motor deficits for eg in cerebral palsy, limitations with certain activities like driving, swimming etc, and side effects due to medicines. The child’s needs in these areas also need to be adequately addressed and hence it is highly recommended to get the child holistically evaluated by a qualified pediatric neurologist.

What causes breakthrough seizures in otherwise well controlled epilepsy?

In otherwise well controlled epilepsy, drug therapy default (skipping dose of anti-seizure medication) is the commonest cause of breakthrough seizures. Apart from this, intercurrent fever, sleep deprivation and stress can worsen epilepsy control and cause breakthrough seizures.

What steps can I take to ensure optimum care of my child with epilepsy?

  1. Seek treatment from the right professional- this is very important. Children have specific needs, particularly in neurological disorders. So you must seek advice from a qualified pediatric neurologist. Unfortunately, there are several professionals who claim to be pediatric neurologists without formal qualification and training in pediatric neurology.
  2. Be regular in giving medicines- this step sounding very simple, actually is one of the most important things to do. Missed doses of medicine, particularly during festivals or while travelling can result in breakthrough seizures.
  3. Seek care for intercurrent illnesses with fever at the earliest
  4. Ensure that the child has a balanced lifestyle. Ensure regular and adequate sleep and right nutrition.
  5. Be aware of dangers- for instance possibility of seizure while swimming. Unsupervised swimming in a child with epilepsy can be dangerous!
  6. Discuss medicine related side effects with your doctor.
  7. The child should be carrying an identification card mentioning that he/she is suffering from epilepsy, what to do when the child has seizure and emergency contact details.
  8. Parents, teachers and other care-givers should be aware of what first aid to provide when there is a seizure.
  9. Do not stop medicines without doctor’s advice.
  10. Maintain a seizure diary/seizure log/compliance log with medicines and diet
  11. Try to get as much knowledge about the condition as possible. It would be a good idea to join epilepsy support groups and interact with parents of children with similar condition.

What to do when the child has a seizure?

  1. Do not panic
  2. Do not try to insert any object in the child’s mouth
  3. Place the child safely in recovery position
  4. If the seizure lasts for more than 3 minutes, put midazolam nasal spray in the child’s nostrils as per the dose mentioned by the doctor.
  5. When indicated, make arrangements to take the child to the hospital

What are the necessary steps to take if seizures persist after surgical intervention?

The condition requires further medical and dietary intervention, if surgery fails. A repeat surgery is often not recommended.

How is the decision for surgery made?

The investigation regimen bases the methodology of treatment on the patient’s clinical history, and results of diagnostic tools such as Electroencephalography (EEG) and Magnetic resonance imaging (MRI) techniques. An EEG aids the detection of electrical responses emanating from a specific location in the brain. An MRI report highlights the structural abnormalities in a specific brain area. If the clinical evidence, EEG and MRI converge on the same node of the brain, then a decision for surgical intervention can be effectively made.

What is the measure of a controlled seizure?

When the incidence of seizure reduces by 50%, it is regarded as controlled seizure.

Do anti-epileptic drugs reduce the quality of life in the patient?

This entirely depends on the medicine and type of epilepsy it is being prescribed for. Though most drugs have been safely tested, there are mechanisms in place to observe, control and regulate side effects of anti-epileptic drugs.

What are the child-friendly versions of a Ketogenic diet?

Modified Atkins diet and low glycemic diets have been shown to be less rigorous versions of a Ketogenic diet. This is because following a Ketogenic diet requires strict supervision, whereas the variants of it mentioned above have been shown to be more liberal, hence more appropriate for children.

When is Ketogenic diet prescribed and which patients are the prime recipients for Ketogenic diet therapy?

Blood investigation and a complete nutritional assessment of the child is required to prescibe Ketogenic diet therapy.

Are febrile seizures genetically pre-determined?

It is not necessary for the effected child’s parents to be the carriers of the disease. No single gene has been implicated as the causitive agent of febrile seizures. Mutations in multiple genes have been attributed to it’s onset.

Can febrile seizures cause long-term learning and behavioural disabilities?

No. Children in the age group of 6months-5years are at a risk of febrile seizures. The long-term risk of epileptic damage in these patients are low.

What are the common factors that impact the reccurance of a seizure?

  • Missed doses of the anti-epileptic medication(s)
  • Stress
  • Sleep deprivation

Is it advisable to treat a child for epilepsy, that is only based on EEG evidence, with no clinical history?

Absolutely not. A regular EEG report can show epileptic currents, sporadically. This is often misdiagnosed as epilepsy in the child.

Are ketogenic diets effective ?

This depends on careful assessment of the child as a suitable candidate for it, and also determined by the sub-type of seizure being addressed by this therapy.

How frequently is the daily dose of an anti-epileptic drug increased? Would blood tests prove to be effective in the reconsideration of drug dose?

The dose of the anti-epileptic drug is not relative to the age or body weight of the child being treated. This is determined to a large extent by the frequency of the seizure after the initial dose of the drug.

Do hormonal changes, such as during puberty and pregnancy influence seizure incidence?

Yes. Hormones have been shown to either worsen or improve seizure episodes. This is very specfic to the nature/type of epileptic convulsions. This can be predetermined to a certain degree during the initial diagnosis of the seizure type

How has the experimental therapy of ‘Masking’ been used by the medical community in the management of seizures?

The technique of ‘Masking’ requires rigorous clinical trials for validation of it’s efficacy in epilepsy management.

Can specific foods worsen seizure incidence ?

There have been reported instances of certain foods enhancing seizures. However, these reports are based on observations, with no clinical basis established to support them. But, avoiding these specific food types maybe beneficial for the child. To provide a few examples – Gluten : Gluten in wheat has been shown to facilitate brain damage in certain predisposed individuals. However, there is no substantial evidence to prove the same. Monosodium glutamate (MSG) : Glutamate, a neurotransmitter has been shown to interfere with receptors in the brain that respond to anti-epileptic drugs. It is thus safer for the effected child to avoid MSG-containing snacks.

Have alternative therapies such as Homeopathy and Ayurveda been shown to be effective strategies for epilepsy treatment?

There isn’t enough evidence in the form of clinical trials, to support the efficacy of these alternate modes of therapy.

Have there been cases of epilepsy reported, which remain uncontrolled even after drug and surgical interventions?

Yes. There have been reports of uncontrolled seizures in such cases. There episodes of deregulated seizures are often attributed to abnormal brain circuitry that form early on during the child’s brain development. Hence, surgically removing the source of seizure does not help in these cases. Drastic medical interventions such as Vagus nerve stimulation have been shown to be effective in controlling this class of seizures.

What are the reasons that render a therapy ineffective?

  1. Severity of the disease
  2. Unsuitable medication for the nature of seizure
  3. Sub-optimal dose of seizure medication, which needs to be revised.
  4. Existence of factors that could perpetuate epilepsy, such as stress and sleep deprivation.
  5. Most important cause: The cause of epilepsy remains largely unknown, which makes it difficult to link diagnosis with effective treatment.

Should an ineffecvtive treatment be withheld and the child left untreated? What should the parents do?

No. Withholding any treatment may worsen the child’s condition. It also poses the risk of placing the effected child in a vegetative state. The case needs to be further examined.

If you have questions about Autism, Down Syndrome, ADHD, or other intellectual disabilities, or have concerns about developmental delays in a child, the Nayi Disha team is here to help. For any questions or queries, please contact our FREE Helpline at 844-844-8996. You can call or what’s app us. Our counselors speak different languages including English, Hindi, Malayalam, Gujarati, Marathi, Telugu, and Bengali.

Abhivyakti, the second chapter – the night that was…

abhivyakthi

The arena was buzzing with action, the stage was set to greet many families, some old and many new. The second edition of अभिव्यक्ति was gaining its final momentum.

Tanvi was prancing around the arena with that big smile on her face, racing towards her mother Bharathi, who happened to be one of organizers for the event. “She is so excited about her dance performance”, said Bharthi, and true to that her feet were singing with excitement.This year’s theme at Abhivyakthi was an ode to the talents of individuals with Downs syndrome. There were singers, dancers, fashonistas, you name a talent and you could spot them all getting ready to have their grand moment on stage. The big grand moment to showcase their many hidden talents to the world. Disability was not going to come in their way.

While the performers were getting ready for their gig, food stalls were being set up with delectable delicacies to tempt the audience with their wares. The mouth-watering aroma wafting from them – Shiva’s doughnuts from Sanjos, the savory snacks and Kshitij’s cool nimbu paani, and not to mention the Kulfiwala’s kulfis stood out as the cherry on top of the cake.

The window shopper in most started to get distracted by spotting lovely key chains made out of beads, craftily made by Phanindra and the lovely jute bags designed by Teja.  The wide range of products displayed in the many stalls were a testament of every individual’s creative expression.

Pranav was selling organically grown medicinal plants, organic fertilizers and insecticides from the nursery he runs with his mother. The siblings and friends of the differently-abled were just as determined to show their support and had set up photo booths, artistic balloon making stalls and craft corners to tease the creative instincts out of the passer-by. It was a common sight to see kids playing with balloon swords and animal forms at the arena, clearly having a lot of fun in the process.

While the arena was buzzing with these activities, the large canvas of the art gallery was adorned by the paintings done by Kedhar, Sri Harsha, Krishna Pranav and Tanay. It was a different world where words were being beautifully conveyed with the stroke of a paintbrush.

The stage performances started after the chief guests were felicitated by the children. The dignitaries who graced the event include Ms. Sridevi Prasad from Shankar foundation, and Mr. Ramajoga Rao from Parivaar, who were the honorary chief guests for this event. Other dignitaries who joined in for an evening of fun with the children were IAS officer Ms. Hari Chandana  Dasari (Zonal comissioner GHMC), Prashanth(actor) and Mr.Hari Babu (Sai Krishna Teja foundation).

The presenters Sahana, Spruha and Karthick were truly awesome, shining throughout the event with confidence and motivating the participants on stage with their words. The love and pride for their sibling/mama came through loud and clear when they walked the ramp with them at the fashion show.

Eyes were glued on the stage during the dance performances. The performances started with the very talented V.N.Divya’s Bharatnatyam recital, whose passion for the art shined through by the impact it had on the audience.

Nihar,  Pearl, Sejal and others from Shankar foundation gave a memorable tribute to veteran actor Sridevi, with their fabulous dance performances. They had the audience tapping their feet in rhythm by the end of the night.

Satya and group from Ashayam gave a powerful rendition of the fervour and festivities of the annual Bonalu celebrated throughout Telangana, with the quintessential number “Myadhari mysammo….”

It was an emotional experience when the little fashionistas, the boys and girls walked the ramp either by themselves or accompanied by their parent/sibling, in their carefully picked costumes.

The Youth For Seva(YFS) volunteers helped carry the show forward smoothly by serving as the happy helpers of the event organizers. YFS youngsters left their mark of support at the registration desks, on stage while decorating it, in the arrangement of the food stalls, or setting up of the chairs for the eager audience. The spirit and enthusiasm of the kids were compounded by the air of celebration contributed by the YFS team. Age truly was no bar tonight, as we all celebrated our inner child as one truly inclusive team.

What started as an idea among a group of like-minded mothers has now garnered more supporters, increasing the parent group number to almost double its capacity since the event last year.

The icing on top of the cake was when well-wishers, no way related to special needs, approached parents and shared their appreciation. Many of them were genuinely impressed by the event and were looking to volunteer for the next event. This gave a sense of hope to many care-givers in their quest for an inclusive and happy society for their children. What an ideal way to spend a wonderful Sunday evening.

Last but not the least, sponsors for the show include Synchrony Financials, India Cements, Organeek,  Farm2fridge and Ancient Living, whose generosity made the event a reality. A big shout-out to the wonderful team of mothers, aunts, sisters of children/young adults who made this possible.  It is not typical that a group of volunteers can come together and put up an event of this scale which had participation of 80 individuals and audience of 700.

नई दिशा hopes that the joy and excitement that was reflected in each of the performances will inspire other parents to further nurture the talents of their children. Events like these are a reminder for all of us to recognize and respect the identity and abilities of people with intellectual and developmental disabilities. To end with a beautiful quote by Robert M. Hensel – “There is no greater disability in society than the inability to see a person as more…” 

Adios Abhivyakthi, till we meet next year.

A big shout-out to Kiruthika Srinivasan, one of our parent champions, for writing this article and helping us spread the inspiration and joy

If you have questions about Autism, Down Syndrome, ADHD, or other intellectual disabilities, or have concerns about developmental delays in a child, the Nayi Disha team is here to help. For any questions or queries, please contact our FREE Helpline at 844-844-8996. You can call or what’s app us. Our counselors speak different languages including English, Hindi, Malayalam, Gujarati, Marathi, Telugu, and Bengali.

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