General Principles of Treatment

Before starting treatment, understanding the basic reasoning behind epilepsy treatment makes you a much stronger and calmer parent. This chapter explains the principles that all treatment decisions rest on.

What Is the Goal of Treatment?

The goal of epilepsy treatment can be summed up in a single sentence: to control seizures as well as possible while keeping side effects to a minimum. The ideal is a balance where the child has no seizures at all and no discomfort from the medication. This goal is reached in most children. In some severe cases, however, the aim may be to reduce the most harmful seizures and improve quality of life, rather than achieving complete freedom from seizures.

Is Medication Started After Every Seizure?

No. As we noted earlier, after a single seizure your doctor may not start medication right away. The decision to start medication is made individually, based on the type of seizure, the EEG and imaging findings, the risk of recurrence, and the child's overall condition. Sometimes a “wait and watch” approach is more correct than unnecessary use of medication. This decision should be made together with you.

Why Start With a Single Medication?

In epilepsy treatment, the golden rule is to start, whenever possible, with a single medication (monotherapy). A single medication keeps both side effects and drug interactions to a minimum. The medication is started at a low dose and increased slowly (the “start low, go slow” principle); this way, the body adjusts to the medication and side effects are reduced. If the first medication doesn't work or can't be tolerated, your doctor usually moves to a second one. In some situations, however, using more than one medication together (polytherapy) may be necessary.

The Golden Rules of Sticking to Medication

Give the medications every day, at the same times whenever possible. Consistency is the foundation of seizure control.

Never stop the medication, change the dose, or switch to another brand without consulting your doctor. Stopping the medication suddenly can trigger severe seizures that hadn't occurred in a long time.

Ask your doctor ahead of time what to do if a dose is missed, and write it down.

Refill the prescription before the medication runs out; it is very important that the medication never runs out.

How Long Does Treatment Last?

This is one of the questions families ask most often, and the answer varies with the child's situation. As a general approach, after a child has been completely seizure-free for a certain period (usually 2 years or more), the doctor may consider gradually reducing and stopping the medication. Whether or not the medication can be stopped depends on the epilepsy syndrome, the EEG findings, and how long the child has been seizure-free. In self-limited syndromes, the medication can usually be stopped safely, while in some conditions such as JME, long-term treatment may be needed. Stopping the medication, just like starting it, is done slowly and under the doctor's supervision.

Teamwork and Your Role

Epilepsy treatment is a partnership. The doctor makes the right diagnosis and plans the treatment; but you are the one who makes the treatment work in everyday life. Giving the medications regularly, keeping track of seizures, watching for side effects, keeping in touch with the school, and going to follow-up visits regularly are all inseparable parts of the treatment. Keeping a seizure diary (see Chapter 40 and the Appendices) makes this partnership much more effective.

Patience in Treatment: Finding the Right Medication Can Be a Process

For some families, the first medication tried gives an excellent result the first time. For others, finding the right medication and the right dose may take a few tries. This does not mean the treatment has “failed”; every child's body and epilepsy are different, and your doctor may make adjustments until the most suitable balance is found. During this process, it's important to be patient and stay in close touch with your doctor. Your seizure diary is the best way to see whether these adjustments are moving in the right direction.

Realistic Expectations When Starting Medication

When a medication is first started, it can take time to show its full effect, because the dose is usually increased gradually. A few more seizures during this period do not mean the medication isn't working. Also, when starting a medication, some temporary side effects (drowsiness, mild unsteadiness) may appear, and these often ease within a few weeks. Knowing about this transition period prevents unnecessary worry. Of course, if you see an unexpected or serious sign, contact your doctor; but don't panic over expected, mild, and temporary signs.

Being a Partner in Treatment

Modern medicine embraces having decisions made together by the doctor and the family (shared decision-making). This means your doctor explains the options to you, and you take part in the process by considering your values, your concerns, and your child's daily life. If a possible side effect of a medication worries you, if a treatment makes your child's school life harder, or if you're unsure about something, share it openly. The best treatment plan is one that is both medically sound and in tune with the realities of your family.