Seizure Disorder (Epilepsy) Part 2 — Treatment, Side Effects, Restrictions, and Implications for School

Treatment

Many medications are available to treat a person with a seizure disorder. The doctor chooses a particular medicine based on the type of seizures, the person's age and general health, and any problems previously encountered with other medications. Sometimes, the doctor must try more than one medication before the seizures can be controlled adequately. Occasionally, a patient must take more than one medication daily to achieve adequate seizure control. Rarely, seizure control is not attainable using medications alone.

Even a child whose seizures are generally well-controlled may have an occasional seizure, which is called a "breakthrough seizure". This may happen due to another illness, especially if the child has a fever. Seizures can also be triggered by lack of sleep, excessive stress, and other circumstances. In certain cases, a patient's caregivers might need to have emergency medication on hand to give for a breakthrough seizure, if that seizure lasts more than a few minutes or recurs several times. This is a condition called "status epilepticus".

In a patient whose seizures cannot be controlled with medications, there are still options, which are discussed below. These options include a special pacemaker-like device (the Vagal Nerve Stimulator or VNS), a special and very restrictive diet (the Ketogenic Diet), and brain surgery to remove the specific location where the seizures start (Epilepsy Surgery). These measures are very complicated, and require a team of specialists who are experts in these treatment methods. Before deciding that these measures are required, very extensive tests must be performed. The necessary specialists and the tests required can both be found in a Comprehensive Epilepsy Center.

Medications

Finding the right medication.

There are numerous medications used for treating seizures. Some of the more commonly used ones in children are:

  • carbamazepine
  • ethosuxamide
  • lamotrigine
  • levetiracetam
  • oxcarbazepine
  • phenobarbital
  • phenytoin
  • topiramate
  • valproic acid
  • zonisamide

Vagal nerve stimulation

Vagus nerve stimulation (VNS) is a type of treatment in which short bursts of electrical energy are directed into the brain via the vagus nerve, which is a large nerve in the neck. The energy comes from a battery about the size of a silver dollar, which is implanted under the skin. Fine wires run under the skin and attach to the vagus nerve. The doctor will then program the device to deliver a small electrical stimulation every few minutes. This type of treatment has been available for almost two decades, and can be tried when other treatments are not effective.

Ketogenic diet

The brain predominantly runs on glucose, which is obtained from food consumed. If not enough glucose is available from food, the body will be forced to create glucose from fat. This process causes the buildup of ketones in the blood. Hence, this is often called a "ketogenic diet". About one-third of the children placed on this diet become seizure free, and another one-third improve but still have a few seizures. The remaining one-third stop the diet because either it was too difficult to maintain or it did not help the seizures.

Despite ongoing research, doctors still do not fully understand why this diet works for some children. However, it is clear that any child must be followed closely while on a ketogenic diet

Epilepsy surgery

When medication fails to prevent seizures, surgical removal of the seizure-producing areas of the brain has been an option for over 50 years. Due to the development of new surgical techniques and new ways to identify the areas of the brain that must be removed, these procedures are becoming more frequent, safe and successful. Epilepsy surgery can be performed on both children and adults. However, it is not a suitable treatment for everyone who has a seizure disorder, nor is it appropriate for everyone with poor seizure control.

Choosing medicines.

Possible medication side effects

Almost all seizure medications can cause the child to feel tired, sleepy, dizzy, "off-balance" or clumsy. The medications might increase or decrease the child's appetite. Rarely, they can cause stomach upset. Some can cause hair loss (alopecia) or excessive hair growth (hypertrichosis). Rarely, seizure medication can affect the function of the bone marrow or the liver. Laboratory tests are needed to check for these side effects.

Any medication can potentially cause an allergic reaction, which might involve a rash, swelling of any part of the body and even difficulty breathing. A severe allergic reaction to a medication can be very serious. If this is suspected, contact the physician or proceed to the nearest emergency room as soon as possible.

Alternative medicines

Herbal, holistic or alternative treatments are sometimes recommended by relatives or friends, or from sources found on the Internet. These may consist of herbal, home or homeopathic remedies. They might also contain natural products such as vitamins and amino acids. Taurine, an amino acid, is frequently recommended as a treatment for seizure disorder. Because these remedies are not, by definition, drugs or medications, they have not been rigorously tested by the Food and Drug Administration (FDA). According to the best information currently available from evidence-based medicine sources, not one of these products has been shown to be effective for the treatment of seizures.

Physical, dietary and other restrictions

Diet restrictions.

Although a child with seizure disorder will not be restricted in terms of diet and most activities, a child might require modifications on certain physical activities:  if the seizures are severe; if the child has other underlying diagnoses; or if the child's medications cause dizziness or clumsiness. It is important to keep the area around the child free of items or objects that could cause harm during a seizure.

During certain activities, such as swimming, bicycling, or riding a horse, the child must be supervised by an adult who is knowledgeable about seizures and how to treat them. The Epilepsy Foundation has a wide selection of informative sheets (that can be printed at home) in both English and Spanish, which cover topics such as generalized and focal seizures, emergency treatment, and advice on living with a seizure disorder. These are available through the Epilepsy Foundation Web site (http://www.epilepsyfoundation.org/).

What should I do if I see my friend having a seizure?

During a seizure, it is important to remember that your friend does not have control over the body, and needs to be protected from falling or hitting a hard surface. Other measures to remember:

  • help place your friend into a safe position, typically lying down on the floor, away from walls and furniture
  • observe your friend for choking
  • roll your friend to one side, so that drool and vomit will drip readily out of the mouth
  • your friend might not seem to be breathing, but if the face, hands and the rest of the body are not turning blue, then your friend is getting enough oxygen; your friend is simply taking shallow breaths
  • however, if the lips, face, arms or hands are turning blue, call 911 and begin CPR
  • despite old legends about biting or swallowing the tongue, do not put any object or your fingers in your friend's mouth
  • if a seizure lasts more than five to ten minutes, this is an emergency and an ambulance should be called

Once the seizure ends, your friend might be dazed and disoriented, and will probably want to sleep for a few hours. Keep your friend in a safe position until help arrives or your friend awakens and regains orientation.

Implications for school

Issues at school.

The possible side effects of seizure medication may cause some significant implications for school. These medications can cause the student to feel sleepy, dizzy, "off-balance" or clumsy. These side effects might require adaptations or modifications at school. For example, the school might need to allow the student to rest in the nurse's office, limit assignments to an amount that can be completed in a reasonable time, or provide adaptive or modified physical education activities. The child, parents, physician, nurse and hospital school teacher can help determine the need for appropriate physical modifications.

Some anti-seizure medications cause an increased appetite. In this case, the student would require snacks during school. School personnel should ask the parents and medical providers for guidance regarding expanded dietary needs.

Socialization can be a challenge for children with seizure disorder. Unfortunately, there is still a social stigma attached to this diagnosis. Peers and others might be frightened of the seizures, or fear provoking a seizure in the child. Therefore, they might exclude the child from activities, due to misplaced concern and ignorance. It is important to include the child with seizure disorder in activities at school to the greatest extent possible.

With the consent of the student and parents, an educational session on seizure disorder should be considered for all classmates and educators who interact with the student. Education will help every person to understand this condition (peers, adults, school personnel and others). Education is essential to break down barriers and end misperceptions about seizure disorder.

A child with a seizure disorder may also have one or more coexisting conditions, each called a "comorbidity" (KOH'-mor-bi-di-tee). Some of these conditions can cause problems with learning, and are referred to as "cognitive comorbidities". These problems may prevent the child from learning or keeping pace with classmates. Therefore, a child with a seizure disorder should be evaluated to determine whether a special education program might be beneficial. If that is the case, an Individualized Education Plan (IEP) will be developed by the school professionals and the parents to find the best way to meet the student's unique learning needs. If the student does not qualify for an IEP, the school might still need to provide modifications or accommodations to the general education curriculum. A Section 504 Plan (referring to Section 504 of the Rehabilitation Act of 1973) may be developed to help ensure that the student has the necessary support to succeed in school. Other comorbidities include depression, anxiety, mood disorder and attention deficit disorder. A child with one of these conditions may need to be seen by a psychiatrist or psychologist. Physical comorbidities include headaches, ulcers, fatigue and a host of other symptoms. Other concerns may include the child's fear of having a seizure in public, difficulty with peer relationships, and the stigma of having the diagnosis of seizure disorder.

Every person who works with the child (such as educators, coaches, clergy and child care providers) needs to understand these issues and how they affect the child and family. The support of caring adults and peers is vital to ensure that the child with a seizure disorder enjoys the greatest success in school, the community and life.

KU Kids Healing Place

During treatment for seizure disorder, there are many challenges for the child and family. In addition to the essential medical treatments, it is important to care for the psychological, social and spiritual needs of the patient and the family. This type of care, called palliative care, previously had been reserved for only the sickest patients. However, research has demonstrated that palliative care helps maintain normalcy throughout treatment, recovery and life. Today, every child with seizure disorder receives the benefit of palliative care, along with the family members. The KU Kids Healing Place (KUKHP), through the Department of Pediatrics at the University of Kansas Medical Center, focuses on treating all aspects of the child and family, ensuring that each receives the care needed to maintain psychological, social and spiritual well-being during treatment for seizure disorder and on into life. The entire treatment team will work to ensure that the needs of the child are recognized and addressed both in the hospital and in the community, including school, sports, worship and activities. KUKHP partners with school professionals, peers, clergy, coaches, scout leaders and many others to ensure that the child continues to grow and achieve in all environments.


For more information:

Part 1 — Description and Diagnosis

Pediatric Epilepsy Update Workshop
March 12, 2010, KU Medical Center

View three separate presentations from experts in the field.
<View the presentations>

Epilepsy Foundation

8301 Professional Place
Landover, MD 20785-7223
(800) 332-1000

Living with Epilepsy (great videos for kids, teens, adults and those who care about them)

From the Epilepsy Foundation: "Entitled to Respect ... Get the Word Out", a brochure for teens and "tweens" with seizures as well as their family and friends.

Epilepsy.com

http://www.epilepsy.com/
Information for families, caregivers, children, teens, women and seniors.

Contributed by:

Enrique Chaves, MD
Clinical Professor
Pediatric Neurology
Department of Pediatrics
University of Kansas Medical Center

Kathy Davis, MSEd, PhD
Associate Professor
Project Director, Connected Kansas Kids
Director, KU Kids Healing Place
University of Kansas Medical Center