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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. lnvestigations 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 avialable 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 childs needs in these areas also need to be adequately addressed and hence it is highly recommended to get the child holitstically 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 contac 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?

a. Missed doses of the anti-epileptic medication(s) b. Stress c. 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?

(a) Severity of the disease (b) Unsuitable medication for the nature of seizure (c) Sub-optimal dose of seizure medication, which needs to be revised. (d) Existence of factors that could perpetuate epilepsy, such as stress and sleep deprivation. (e) 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.

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