If you have come to this section you probably have a child or care for one who has CP and seizures. According to “UpToDate” 45% of people with CP have seizures, also called epilepsy. Epilepsy without CP is challenging to manage but when you add it to the matrix of challenges associated with CP, strategizing for yourself and your child’s benefit can be daunting. As a parent of a child with CP, the feeling of uncertainty will probably be familiar territory for you, but it is even more amplified when seizures are added to the mix. I will try and be of some help to you.
What disturbs most parents and others about seizures is the lack of control and predictability associated with them. This is what shook me to my core. Seizures vary from one child to the next in duration, intensity, frequency, physical presentation, and controllability, and any one of these variables may itself change over time. Dealing with seizures can feel like a roller coaster. Luckily, recent advances in seizure prevention and treatment have made seizures less scary than they used to be.
The good news is that there are strategies for coping to help you create some order out of the chaos. As with other parts of the website, the range of experience associated with seizures will vary from one child to another. Despite the differences there are a few common elements and hopefully you will find some useful ideas here. Having a plan for when Maya has a seizure, and thinking about seizures from a new perspective (with the help of our doctors) gave us the pieces we needed to begin to accept this aspect of her condition and move forward. We take whatever feels empowering to us and this is what we hope to pass on to you.
*For the latest news and research related to seizures/epilepsy and more visit our CP Research & News section.
I developed this list by writing down our story (located at this end of this section) and pulling out the important components that I thought other people would find useful. I wish I had a list to guide me at the beginning of this journey. The very idea of sitting down and reading a book was very frightening to me but I did want some basic strategies for approaching this challenge.
Here are our suggestions for when your child is diagnosed with epilepsy:
Find a pediatric neurologist you like
Many of you will be referred to a neurologist. This may or may not be the right doctor for your child. Be sure to find one you like 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.
Get a second opinion
Even though we trust our pediatric neurologist we wanted a more in depth look at the origin of Maya’s cerebral palsy and seizures. You don’t have to do this but it was important to us since we would be making major decisions about whether to treat Maya with medication. 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.
Educate yourself about your child’s seizures
There are a few reasons to learn about your child’s seizures. The first would be to assist your child’s doctor in determining what type of seizure your child is having. 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 your child’s seizures. Your description of your child’s seizure is also critical in helping the doctor identify the type of seizure your child is having. This in turn will be helpful in determining what type of treatment or medication may be most effective. If you can’t remember any details of the first seizure, don’t worry because this is normal. Observing and describing the seizure gets easier after the shock and fright of the first one.
The second reason would be to learn the signs and symptoms of your child’s seizures so that you may prepare yourself and your child if one occurs again. The more you can observe your child 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 child’s condition. Rather than running scared with anxiety and fear and praying that your child never has another seizure (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.
Some things to consider finding out or discussing with your child’s doctor include:
What is a seizure and what is happening in the brain during one?
What causes a seizure?
Can my child be harmed by a seizure?
Does the length and/or frequency of seizures influence their potential for harming my child in any way?
Will my child always have seizures?
Can my child continue with her regular activities?
What are the issues I need to concern myself with when my child has a seizure?
How closely do I need to monitor my child for seizure activity?
How do I know if my child is having a seizure?
Can my child hear me during a seizure?
What does my child feel during a seizure?
Create an emergency plan
We all hope our child 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 your child and ensure her safety.
- It is imperative that all members of the family and caregivers who interact with your child know how to handle a seizure.
- You may find it helpful to practice emergency procedures in order to feel more comfortable during one and to identify any potential confusion about prioritizing responsibilities.
- Create a list of dos and don’ts during a seizure. Some examples of what to include to do would be information such as moving the child to a safe place, how to position the child, etc.
- Summarize what your child’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.
We have two lists; one is for babysitters to review and educate themselves, and the other is the emergency guide. The emergency guide differs from the other in that it is shorter and gives the most critical components of attending a seizure. During emergencies I find I can barely read or remember my phone number. Having your address and phone number written down, and instructing people to call 911 at the time of the seizure is very important. It is not because you think your caregiver is unintelligent, it is simply to help keep her focused during the event.
Keep appropriate supplies nearby
Always carry any emergency medication your child’s neurologist may have prescribed such as rectal valium (also called Diastat). Do this even if it means turning the car around and potentially being late for an appointment. The alternative to not having the medication may really be unpleasant. Be sure the medication has not expired and is kept at the appropriate temperatures listed on the medication. In addition to ensuring your child has one dose with her 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. We have a small Tupperware bowl in the kitchen that has a dose of Diastat along with clear emergency instructions, gloves, and a watch. The watch can be used to time the seizure and determine when and if to administer medication.
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.
- Always carry something soft with you. We carry a blanket or soft pillow on the back of Maya’s wheelchair so we have something to put under her head in the event of a seizure.
- Purchase a video monitor. For us, it has been a fantastic investment. We rely upon the monitor to ease our concerns if we hear an unfamiliar noise without having to rush into her room.
Know your child’s seizure patterns
Our neurologist has repeatedly shared with us that the best prevention for our child’s seizures is to keep her routine/schedule as regular as possible. Does this mean we will never deviate from it? No, but we do our best to keep her sleep and wake schedules as routine as possible. The authors of Seizures and Epilepsy in Childhood (p 49) 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).”
In addition to this we also have compiled a list of associated events/triggers for Maya’s seizures. Compiling a list of potential triggers may be difficult or impossible since some seizures are random. If you do find that there are some definite triggers for your child, perhaps you may find a little piece of mind and sense of control by trying to avoid them. Ultimately, we don’t know if what we have charted are simply coincidence, or things that simply lower the seizure threshold.
If you wish to begin keeping a list of potential triggers some things you may wish to consider noting are:
- What was my child eating before the seizure?
- Has my child been under stress or ill? Did my child have a fever?
- Has my child’s sleep schedule been different?
- Have we been traveling?
- What time of day did the seizure occur?
- Did your child report any strange or uncomfortable symptoms beforehand?
- Was there a light stimulus present (strobe, flashing etc.)?
Despite any information you may gather about potential triggers for your child, remember, sometimes there is just nothing you can do to prevent a seizure.
Talking to your child about her seizures
We have openly discussed Maya’s seizures with her as way of helping her understand and cope with them. It scared her as well, so by discussing what she was feeling and giving it a name, we have helped her cope wither feelings both physical and emotional. We have tried to discuss this with her without causing her added stress. We try to comfort her and set our feelings of fear aside.
You may wish to speak with your developmental pediatrician about when and if this approach would be helpful and appropriate for your child. We have decided to call Maya’s seizures “the dizzies”. We came up with this name together. She would often report feeling dizzy before having a seizure or for a few days leading up to one.
Making the decision to start a new medication for your child is often very scary. Sometimes the side effects associated with medication can be difficult to manage and this can be a deterrent for some parents to begin using it. However, once you have decided to try, you may find relief in the therapeutic effects and the lessoning of your child’s seizure activity. Every child is different so you have to be prepared for a trial period for your neurologist to determine which medication is best and how much your child 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.
If you can find a medication that works most of the time for your child it is wonderful. We also noticed our daughter complained less about dizziness and she had improved concentration with her medication. This was a surprising find since seizure medication can cause problems with concentration. The medication is not perfect but we are grateful for its benefits.
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 articulates about how she feels 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 track your child’s medication administration. This eliminates confusion among family members about whether your child has been given her medication. After several occasions of not remembering if we gave Maya her medicine this has been a helpful solution.
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 “movment 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*
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:
Some families find that their child has little relief from seizures by taking medication and opt to try a Ketogenic Diet. I have heard stories that this approach works wonders for severe cases that have gone uncontrolled by medication. A fellow parent of a child with CP that I am friendly with said it is much easier to begin this type of diet with younger children because the older the child the more established her eating habits. This option is still a possibility, but I share this to prepare you for the possibility of your child having difficulty adjusting to the diet. You must also ask your neurologist about it because it must be done under the supervision of your child’s doctors.
Here is a Foundation raising awareness about the Ketogenic diet
Take care of yourself
Throughout the site I state the importance of parents taking care of themselves. 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 your child. 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 before you have lived through these challenges and you will too.
I want to emphasize the importance of getting out of the house and having a break. We never wanted to leave our daughter and it took months to get comfortable enough to do it; but we knew we had to resume our life as a couple outside of our home at some point. It is important to find a relative, friend, and/or other caregiver who is competent and willing to attend a seizure (if necessary) while watching your child. 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 child’s care during one. We found that some people we spoke with had outdated information about how to handle someone having a seizure. This in addition to the unique situation of each child, 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.
Our experience of Maya’s first seizure:
I am taking a deep breath as I begin this section. Maya had her first *major seizure when she was three years old. I had heard stories of other children having seizures. I always would breathe a sigh of relief and think “thank goodness” we do not have to do contend with that issue. It seemed overwhelming and frightening and I was happy to keep those thoughts about what it may be like away from me. Then it happened to Maya and boy did it happen. We were taken by complete surprise. I was in the garden and my husband was working in the house while my Maya was still asleep. He heard a strange noise and checked on her. He came outside screaming my name. I remember the pain and fear in his face. I generally process emotion later when I am involved in an emergency so between the two of us, we managed to call EMS and remember our address (something that really does seem to slip your mind during a very stressful situation).
The whole event seemed surreal. I remember watching her and feeling completely helpless and praying that it would stop. After 25 minutes the paramedics were finally able to get her seizure to stop on the way to the hospital (which is close to us). Thank goodness we had the team we had. They called the ER and asked for guidance in administering medication to control her seizure on the way to the hospital. I have deep gratitude for their foresight, diligence, and commitment. How painful it is even now to write these words.
*My husband suspected Maya had a seizure/s in the NICU but it was never confirmed. Since he is a physician and the other doctors did observe some suspicious movements we did leave the NICU with Phenobarbitol which was discontinued without any further episodes after a few months.
This first seizure was two years ago. It added yet another challenge to our ever growing list of challenges we had to help our daughter face. It was hard. How was I going to be comfortable in my own skin when everything seemed so out of control? I had to ground myself strongly in the present to maintain my sanity. There were sleepless nights and racing thoughts. You can “what if” yourself into knots of anxiety (and you may do this anyway) until you find a new foundation from which to operate. In time we learned about Maya’s seizure patterns (although some kids may not have a pattern), faced and discussed what both me and Blake feared most, and came up with some strategies for integrating this condition into our world.
After the first hospitalization:
The first thing we did once we were home from the hospital was to follow-up with the neurologist. Maya had some tests conducted while she was there including an EEG and an MRI. These tests were followed by even more tests (some repeated) including a sleep deprivation EEG. We had a second EEG when the first one was normal. The reason we did this was because Maya was complaining of dizzy spells several days before and after the seizure and we wanted to see if her EEG would look different during one of these episodes. It didn’t.
We then elected to take our daughter to see a neurologist at a major research hospital out of town to discuss her seizures. This is certainly not going to be a possibility for all families but it is important to make sure you have reliable and accurate information from your child’s doctors. If you are able to get a second opinion you will potentially increase your knowledge and further help your child.
The pediatric neurologist at Johns Hopkins determined that Maya’s cerebral palsy and subsequent seizures were associated with the stress of prematurity. By listening to Blake’s description of her first seizure she was also able to determine the type of seizure Maya had. This information was important in order to determine the course of treatment. Identifying the type of brain injury, location, possible cause, and type of seizures, can help your doctor to determine which medications to use later on if necessary.
We came up with a plan for how to proceed if our daughter were to have another seizure. We discussed medication options and why this doctor would select one over another for our daughter’s particular situation. We educated and prepared ourselves as best as we could and collected our information to take back to our local neurologist who graciously accepted the additional input. We decided at the time to wait and see if she would have another seizure before starting Maya on any medication.
This neurologist shared a few pieces of information that we have found very helpful in coping with seizures. I was so horrified by the length of Maya’s seizure, 25 minutes, that I could not wrap my head around how to process it. This neurologist reassured us by saying that any seizure lasting more than five minutes will typically extend into the twenty-minute mark. She said this was the “normal” cycling of this type of seizure. This also meant that it was important for us to time future seizures so that we could administer the Diastat precisely at three minutes if it had not resolved. If we could stop it at that time she said we had a better chance of ending it more quickly.
Ok, so here was a way we could intervene and have some control. The doctor also explained what the brain is doing during a seizure. It turned out that what was happening and what I imagined was happening were two different scenarios. This doctor’s information removed a lot of the sting and fear I associated with the “S” word. Slowly pieces were coming together and I didn’t feel so afraid.
My acceptance of this situation was crucial to helping Maya cope with this situation. It’s hard to remember sometimes that despite feeling inseparable from your child that she is actually the one experiencing the seizure. So many times I have had to remind myself of this and say, “Wait, a minute, what am I complaining about when she is the one having to go through this in her body”? That doesn’t mean it isn’t normal or that it is wrong to feel this way, but shifting my perspective like this has helped me gather strength and help my daughter to cope better. Let me emphasize that this is not intended to make you guilty. It is meant only to offer you a way of thinking differently about your child’s seizures that may create some distance and perspective for you.
When Maya’s second seizure (and it lasted a long time even after administering the Diastat) landed her in ER again we decided it was best to start her on daily medication. At this point we decided we needed to develop an emergency plan including acting out different scenarios for handling a seizure. This included creating a visible and permanent place for one dose of Diastat medication, written and easy to read instructions that we or a anyone else could review during an emergency, and visual aids for administering the medication. We also purchased a stopwatch to ensure there was a watch available for timing the seizures. We discussed what to do if we were alone, and how to keep Maya safe and comfortable during a seizure. Our instruction list includes all phone numbers including our home phone (and cell phones if someone else is with Maya), our address, and the neurologist’s phone number. It’s amazing how the simplest tasks and information become complicated during an emergency. The more you have thought about it and addressed potential issues, the more relaxed and more efficient you can be during an emergency.
Next, we decided to purchase a video monitor. Our local neurologist had said “Don’t start sleeping in her room now”. This is easier said then done. There was no way I was willing to leave my daughter alone without knowing what was going on in her room. This was particularly important to us because all of her seizures have been upon waking. Our solution was purchasing the video monitor and it has been god-send. Now we quickly glance at the monitor and see if Maya is ok (and we can hear her) rather than having to run into her room every time we hear a noise.
When you are facing a situation like this you are in survival mode and will do anything to protect your child including taking a developmental detour by sleeping in your child’s room or in her bed. Sometimes we do sleep in her room but we are fortunate that she does not particularly like anybody in her space at night so we were not so worried about this becoming a habit. Even if this were not the case I am not sure I would have cared.
Over the last two years, we have experienced numerous seizures. Each one has been scary, stressful, and always seems like a gigantic step backwards. However we have learned that Maya, like most children, is a very resilient child. We also learned how important preparation is to each episode. Hopefully, this section will help you take some control and regain some sanity while dealing with an otherwise very upsetting and scary set of circumstances.