Cerebral Palsy and Epilepsy
It can be daunting to strategize care for your loved one’s benefit (or for yourself) when you have cerebral palsy. But you can do it! In this section we hope to empower you with information and strategies for managing epilepsy. Strategies can help you create some order out of the range of emotions you may feel. The experiences associated with seizures will vary from one person to another. For some people epilepsy may interfere with their daily activities more than they would like, and for other people, once they start the right medication they may not think much about their epilepsy. Despite the differences, there are a few common elements involved in organizing care for the person who has epilepsy. Having a plan for when your loved one has a seizure will help you feel more at ease as you move forward.
Here are our suggested coping strategies for when your child or loved one is diagnosed with epilepsy:
Find a Neurologist (Epileptologist) You Like
Many of you will be referred to a neurologist or an epileptologist (a neurologist who specializes in epilepsy). Find someone you feel comfortable with as your guide and make a change if necessary. This is important since you will be relying upon this person for vital information. Also, this is an individual who you will be dealing with when your family is most vulnerable emotionally, so you want to ensure you have a compassionate and competent professional by your side.
We wanted a more in depth look at the origin of our daughter’s cerebral palsy and seizures. We knew some of the medications could potentially have significant side effects and we wanted a team helping us make these decisions rather than one doctor.”
Mom of a child with CP
Educate Yourself About Your Loved One’s Seizures
There are a few reasons to learn about seizures:
- The first would be to assist the neurologist in determining what type of seizure is occurring. Your neurologist will most likely request brain images or EEGs in order to try and identify the area of the brain that has been injured and is causing seizures. All of this information will be helpful in determining what type of treatment or medication may be most effective.
- The second reason would be to learn the signs and symptoms of your love one’s seizures so that you may prepare yourself and your loved one if it occurs again. The more you can observe about the person and notice changes in behavior, physical symptoms, etc., the better prepared and perhaps calmer everyone will be in the event another seizure occurs.
- The third reason would be to help you begin to emotionally cope with your loved one’s condition. Rather than running scared with anxiety and fear (a normal and human response), if you learn more about them you may feel relieved.
I found that what I imagined in my head was far worse than the reality we were facing. In fact, by learning more about them and having to present the information to family and caregivers assisting us, I realized that physically attending a seizure is not complicated. Instead, it is the emotional potency of the situation that drains me which is an important distinction.”
Mom of a child with CP
Some things to consider finding out or discussing with your loved one’s doctor include:
- What is a seizure and what is happening in the brain during one?
- What causes a seizure?
- Can the person with epilepsy be harmed by a seizure?
- Does the length and/or frequency of seizures influence their potential for harming my loved one in any way?
- Will they always have seizures?
- Can they continue with their regular activities?
- What are the issues I need to concern myself with when my loved one has a seizure?
- How closely do I need to monitor them for seizure activity?
- How do I know if they are having a seizure?
- Can they hear me during a seizure?
- What do they feel during a seizure?
Cerebral Palsy and Epilepsy: Create an Emergency Plan
We all hope our loved one will not have another seizure once the first one occurs. However, you must plan for the possibility of another one so that you can effectively assist them if necessary.
- It is imperative that all members of the family and caregivers who interact with your loved one with epilepsy know how to handle a seizure.
- You may find it helpful to practice emergency procedures in order to feel more comfortable when one occurs, and to identify any potential confusion about prioritizing responsibilities.
- Create a list of dos and dont’s during a seizure. Some examples of what to include to do would be information such as moving the person to a safe place, how to position the them, etc.
- Summarize what the individual’s seizures look like including physical symptoms and behavioral changes. This will help everyone identify when a seizure is about to occur or is occurring.
- Make your list of instructions as clear as possible without being too wordy. You want anyone and everyone who needs this reference guide to be able to follow it while under stress.
Keep Appropriate Supplies Nearby
Always carry any emergency rescue medication prescribed to stop breakthrough seizures (seizures that “break through” the medication barrier). There are nasal and rectal versions of rescue medications and two examples are diazepam and intranasal versed. Be sure the medication has not expired and is kept at the appropriate temperatures listed on the medication. In addition to ensuring the person has one dose with them at all times (especially at school), it is important to have a central location (that does not change) at home for a dose as well.
Here are some other important tips:
- If your child has a helmet be sure it is with her at all times and offer appropriate protection.
- Purchase a video monitor.
- Know your loved one’s seizure patterns
- Maintain a daily routine/schedule as often as possible (for eating, sleeping, waking etc).
The authors of Seizures and Epilepsy in Childhood summarize the importance of finding balance when it comes to assessing the risks/benefits associated with guiding a child who has epilepsy. This pertains to whether the child should take medication, participate in activities etc.. They say, “Life is full of risks and benefits. Although no one would ever do it, the safest place to raise a child is a padded cell. In that cell the child could not be injured when he fell down, tumbled from a tree, or crossed in front of a car. But you would be sorry. Clearly, a child raised without risk would be a very abnormal (and I say unhappy child).”
Cerebral Palsy and Epilepsy: Talking to Your Child About their Seizures
You may wish to speak with your developmental pediatrician about when and if this approach would be helpful and appropriate for your child. Also giving seizures a name that you come up with together with your child may make them feel less frightening or more understandable.
Making the decision to start a new medication is often scary. Sometimes the side effects associated with medications can be difficult to manage and this can be a deterrent for some parents or individuals to begin using it. However, once you have decided to try, you may find relief in the therapeutic effects and the lessening of your or your child’s seizure activity. Every person is different so you have to be prepared for a trial period for your neurologist to determine which medication is best and how much the person needs. This is why it is so important to work with doctors you trust and with whom you have a good relationship. And, determining the type of seizures your child is having is crucial to selecting the appropriate medication.
It is helpful to determine if the benefits of adding a new medication outweigh the negative side effects. Whether it is a physical side effect or an emotional/behavioral side effect, you will be challenged once again by these new problems. It is helpful if you can note any change your child develops while taking the medication, what your child or loved one articulates about how they feel on it, and what new concerns you and your family may have.
You may find it helpful to keep a medication chart in a central location where you medication administration. This eliminates confusion among family members about whether medication has been administered.
Cerebral Palsy and Epilepsy: Seizure Detection|Monitoring Resources
*Please note that these devices have not yet been approved as medical devices through the FDA. Although Emfit is used as a seizure detection device outside of the US, it is considered a “movement monitoring device” in the United States. Also, these devices have been designed to pick up on movements typically associated with only certain types of seizures. They do NOT prevent seizures and they DO have errors.
- Emfit-uses a bed sensor and bedside monitor to detect repetitive movements.
- SmartWatch-can be worn day and night and during sleep for monitoring movement related to seizures. It has a “help” button, option for GPS tracking, and links to android smart phones to alert caregivers of possible seizure activity. *FDA approval is pending*
The websites of the foundations mentioned in the next section below have more information about these devices and more like them.
Seizure assistance dogs for children worldwide: 4 Paws for Ability
- The Chelsea Hutchison Foundation raises money to offer financial assistance/grants for seizure reponse dogs. They also work to distribute Emfit monitors to families who need them.
Foundations that donate and/or help with financing and discounts to purchase seizure devices:
- Danny Did Foundation
- Chelsea Hutchison Foundation
Some families find that their child has little relief from seizures by taking medication and opt to try a Ketogenic Diet. This is a special diet that is high in fat and low in carbohydrates. It’s often used in cases where seizures are not responding well to medication treatment. This is a diet that requires medical supervision and guidance. Check with your neurologist for more information.
Take Care of Yourself
The anxiety associated with anticipating your child’s seizures and figuring out their nature can leave you exhausted emotionally, mentally and, physically. Be sure you reach out for support in any way you may find necessary. Whether it is through counseling, support groups, journaling, prayer, meditation, exercise, extra sleep, and/or additional help, it is vital that you keep yourself healthy and your energy lifted. You will need to feel good in order to think clearly and have the strength you need to support the person with epilepsy. Don’t expect to feel good all of the time. In fact, you will find that some days you have lots of ideas, perspective and strength and other days will leave you wondering where you will find the strength to address everyone’s basic needs for the day. Be easy with yourself and (your spouse) and know that parents and caregivers before you have learned to navigate these challenges, and you will too.
It is important to find a relative, friend, and/or other caregiver who is competent and willing to attend a seizure (if necessary) while caring for the person with epilepsy so that you can have a break. You may be surprised to find how many people have relatives with epilepsy and know about the condition and/or how to attend one. Even so, you always want to go over the particulars of how to manage your loved one’s care during one. We found that some people we spoke with had outdated information about how to handle someone having a seizure (also called “attending a seizure). This in addition to the unique situation of each person, makes it imperative to review your procedures. So, take your time finding the right people to help relieve you, but do remember do get out of your routine and clear your mind.
For more information on cerebral palsy and epilepsy, download our free cerebral palsy tool kit.
- National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. (2020, December 31). Data and statistics for cerebral palsy. Retrieved June 08, 2021, from https://www.cdc.gov/ncbddd/cp/data.html
- The Johns Hopkins University, The Johns Hopkins Hospital, and Johns Hopkins Health System. (n.d.). Types of seizures. Retrieved June 05, 2021, from https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/types-of-seizures
- Miller, F., & Bachrach, S. J. (2017). Page 71. In Cerebral palsy a complete guide for caregiving (2nd ed., p. 71). Baltimore: Johns Hopkins University Press. doi:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2083126/