The Practical Side of Coming off of Seizure Medicines

This week’s article by Katherine C. Nickels, MD, of the Minnesota Mayo Clinic, discusses when seizure medicines may be withdrawn in a child. It’s absolutely fantastic when a person, young or older, has been seizure free long enough to consider stopping seizure medicine. But it’s also a difficult time. Emotionally, people may feel excited and hopeful to be off seizure medicines, yet also scared of seizures coming back and hopeless if they can’t get off seizure medicine completely.

When a child is involved, the emotions get even trickier. I went through this with my son many years ago. He was pumped to get off medicines and I was scared. I wanted to support his excitement but the little voice inside me kept raising questions like:

• Is coming off the medicine worth the risk of seizures coming back?

• What if he does have a seizure – during the taper or afterwards? How will he feel? How will my husband and I feel?

• Is it really a good time to do this? And is there a ‘good time’ to make this change?

Everyone will have these questions, some more than others. It’s important to listen to all sides- your child’s, your spouse’s and yours. And yes, even that little voice inside of you. Try to see the issue from each other’s perspective and make plans about how to address the questions or issues you each have. Here are a couple important questions to consider.

Is there a ‘good time’ to come off seizure medicines?

The time to make a change in medicines is when everyone is ready and can afford to devote time to the change.

• Think about other factors that could affect your child’s seizures and try to keep those things as stable as you can while coming off the medicine. For example, don’t start lowering medicine when your child is starting something new and may be under more stress or sleep deprived, such as, when going to camp, just starting school, going on vacation, etc.

• Think about what may happen if he or she does have a seizure during the change. If he’s at camp, will he be at greater risk of injury? If so, could you delay making the change while he’s in that environment? If not, will you need to consider more safety precautions than usual?

  • If he’s at camp, will he be at greater risk of injury? If so, could you delay making the change while he’s in that environment? If not, will you need to consider more safety precautions than usual?

How do I keep my child safe while lowering medicines?

Remember, seizures are unpredictable and you can’t always keep your child safe. This is true for any parent, more so for a parent of a child with seizures. However, there are a few things you can do to lessen the risks of safety problems.

• Make a safety plan together with your child (their involvement will obviously depend on their age) and talk about it with your child’s doctor.

  • Consider activities such as swimming, boating or other water activities. Should he or she refrain from them or make sure there’s an adult who is capable of seizure first aid and lifesaving techniques nearby.

  • Consider climbing, sports and other activities that pose greater risk of injury. What would happen if he or she had a seizure? If the risk and consequences of injury is low, you may not need any extra precautions. If the risk and consequences are high, then you may need to put those activities off for a while or use extra safety precautions during this time.

  • Is driving involved? When coming off a seizure medicine, the doctor may recommend that your teenager or adult not drive for a period of time. This recommendation may vary from one person to another and depend on how long they have been seizure free, how long on medicines, types of seizures, or how fast the medicine taper is. For example, a teenager who has had tonic clonic seizures without warning in the past is at greater risk driving than a person who never had any tonic clonic seizures.

    • For example, a teenager who has had tonic clonic seizures without warning in the past is at greater risk driving than a person who never had any tonic clonic seizures.

• Make sure everyone understands the instructions for lowering the seizure medicine. Write it out on a calendar – note when to make a change, when to get blood tests done if needed, when follow up appointments should be made. Being consistent and keeping close follow-up during this time can make a difference!

• If your child doesn’t feel well after the dose is changed or if you notice changes, talk to the doctor or nurse! Don’t ignore it. Sometimes subtle changes can be signs of the body getting used to a lower dose. Or they could be signs of small seizure activity.

I hope these tips will help you be prepared for medicine changes. Despite the worries about safety or seizures, coming off meds can work well! Being prepared and talking about it together as a family and with your health care team can make it work even better.

Best wishes for a safe and happy week!