When a child is taking an AED (anti-epileptic drug) it is important to manage medications properly and monitor your child regularly.
How you can help your child can manage their anti-epileptic drugs
- Learn about your child's drug: when and how to give it, its side effects and what to do and who to call in case of a severe reaction.
- Follow your child's prescription exactly. Make sure your child takes the right medicine, in the right dosage, at the right time. Some drugs need to be taken with food.
- Ask your child's doctor or pharmacist what to do if your child misses a dose.
- Never stop the medication suddenly; this can trigger life-threatening seizures. Any change in dosage must be approved by your child's doctor.
- Set up an automatic ordering schedule with your child's doctor and your pharmacy so that you never accidentally run out of medication.
- Check the medication when you pick it up at the pharmacy. If the pills look different from last time, check with the pharmacist to make sure that the right drug and the right dose was dispensed.
- Do not give your child any new medicine before talking with your child's doctor or reviewing with a pharmacist. Other medicines may interact with the prescribed AEDs. Make sure your pharmacist knows about all drugs your child is taking, including non-prescription, homeopathic, and herbal medications.
- Some medicines contain alcohol. Ask your pharmacist for alcohol-free medicines where possible. Do not give your child any alcohol.
- When travelling, make sure you have enough medication on hand. Carry a copy of the prescription with you.
- Store medication at the right temperature, as specified by your pharmacist. Store all medications out of reach of children.
- If your child needs to take medication at school, you may need to meet with their teacher or school principal to arrange for medication to be given safely.
- Take your child to see their doctor for regular monitoring and blood tests.
How and why your child's doctor monitors your child while they take AEDs
Your child needs to be monitored regularly while taking AEDs for several reasons.
- There are many AEDs available and it is important to find the one that works the best for your child.
- Once the best drug has been identified, it is important to determine the ideal dosage.
- Once the drug and dosage have been determined, it may be necessary to keep watch for side effects, toxicity and any build-up of tolerance.
- After any change in therapy, it is important to monitor your child's reaction to the change: whether their seizures have increased or decreased and whether they are experiencing side effects.
A member of the epilepsy care team will explain how often your child needs to be monitored, what will happen and where to go for any tests.
Depending on the AED being used, the monitoring methods could include blood tests (for medication levels, blood counts, platelets and/or liver profile), urine tests and blood pressure readings.
Monitoring drug levels in the blood
For some AEDs, there is an established "therapeutic range" for the blood level. This range has been established by clinical studies as the most effective blood level to control seizures and avoid side effects in most children. Your doctor may determine that your child is best treated with levels above or below this range. Levels of AED in the blood can be measured with a simple blood test at most laboratories.
Blood levels are affected by when the last dose was taken. Your doctor may ask you to have the blood test performed first thing in the morning, before taking the AED, when the level of the drug in your child's blood is lowest. This is called a "trough" drug level, and the therapeutic range refers to this level. If the blood is taken soon after your child takes the medication, the test may show that the drug level is too high, even though it may actually be in the therapeutic range.
Test procedures
Blood work
There is usually no preparation for blood work. If your child needs to stop eating or drinking before the blood sample is collected, the nurse or technician will let you know ahead of time.
Your child will need to have blood taken with a needle at a blood work clinic. Blood is drawn into special, small, air-tight tubes called vials which are labelled and sent off for analysis. It doesn't take a long time. For some blood tests, only a finger prick is needed.
Urine tests
There is no special preparation for a urine test. Your child can eat and drink as usual before the test.
Older children will be asked to urinate into a sterile container, after first cleaning the genital area. You may need to help your child with the sample.
Younger children and babies may not be able to give a urine sample. If this is the case, it may be necessary to insert a urinary catheter to get a urine sample.
Blood pressure readings
To measure your child's blood pressure, the nurse or doctor will put a blood pressure cuff on their arm. This cuff is then filled with air, which will squeeze your child's arm. The first number measured is the systolic pressure. This is the pressure as the heart pumps blood out. The second number is the diastolic pressure. This is the pressure as the heart relaxes and refills with blood. This test may be a little uncomfortable, but it will not hurt.
Changing AEDs
If your child's doctor decides to switch their medications, there may also be a transition period during which one AED is being tapered off and the other is being slowly increased. Make sure that you, and anyone else who has responsibility for your child's medication, know exactly what to do during this time. Keep a close watch on your child's symptoms during this period, and talk to their doctor if you have any concerns.
Discontinuing AEDs
In some cases, when a child's seizures have been controlled on medication for one or more years, their doctor may consider stopping the medication. The exact length of time may vary. Most doctors recommend waiting two years after the last seizure to stop AEDs.
Note that with some types of epilepsy, it is very likely that seizures will come back if the medication is discontinued. For these types of epilepsy, it is not a good idea to stop taking medication.
Your child's doctor will explain how to slowly lower (taper off) the medication dosage over a period of weeks or months. Never discontinue the medication all at once without talking to your child's doctor. Abruptly stopping the medication may trigger seizures or status epilepticus.