How To Support A Child With Epilepsy

As an epileptic I had my first seizure when I was 2 and was officially diagnosed with epilepsy in the 8th grade. I also have a almost 2 year old daughter who is prone to febrile seizures. I pray she is never diagnosed with epilepsy. So as you can see not only was I once the child that needed support but I also am a parent that supports a child that is prone to seizures and because of that I am in the unique position of giving you tips from someone who has experienced both sides of the coin. So if you are someone who is looking for some tips to supporting a child in way that will make a difference in their lives then this article is for you.

  1. Find a balance between safety and play.

As parents, we want to protect our children from all the bad things in life. It’s just a natural instinct and has aided in human survival for thousands of years, but when you have a child with a seizure disorder such as epilepsy it can be easy to fall into the habit of overprotecting your child. We begin to envision all these nightmare scenarios of the worst times they could have a seizure and something horrible happening. In response to this, we may begin to shelter them from the world and begin saying no a little too often.

Protecting them is all well and good, but not if prevents our child from learning and experiencing the world in ways they will need to experience to survive on their own. Instead of telling them no to participating in sports because they might have seizure come up with a safety plan that will allow them to participate. You could talk to an adult who runs whatever program and tell them what they need to know including what to do if your child were to have a seizure. You could talk to one of their friends and their friends parents who do many of the same activities as your child and make sure they know what to do. It becomes easier to tell your child yes when you aren’t the only one who knows what to do. By taking the time to educate a select few you can trust, your burden becomes just a bit lighter and you won’t have to worry so much.

An example from my own life, in high school, even though I was toxic on medication much of the time and struggling to find control with my epilepsy I still asked my parents if I could take martial arts. I have always been grateful they didn’t hesitate to help me find a good school to take lessons. It must have been a scary thing to agree to, considering my problem with seizures. When we found a school we informed the teacher and another black belt in the class who was doctor about my condition. This allowed my parents to have faith I would be okay when they dropped me off for lessons. Those who had been informed never hesitated to tell me to sit down and rest if it looked like I was struggling because of my epilepsy. I often don’t have the presence of mind to stop on my own and those people who were informed did a wonderful job looking out for me.

2. Stay in contact with your child’s educators.

Having epilepsy can make your child’s education experience very challenging. Not just because they might have a seizure at school but also because seizures and medications can make it very difficult to learn. As a child, I believed I was stupid for years because no matter how much I studied I never seemed able to grasp the concepts taught in class. I really struggled to get any grade above a D. Unfortunately, the school system I was in at that point of time didn’t have great resources for tutoring and other programs. I often didn’t qualify for that extra help because I was smart but my medication made retaining any new information extremely difficult. So my parents were often meeting with teachers and trying to figure out how to help me do better in school.

Fortunately, that school system vastly improved after I graduated. Many students who needed help had better access to resources for the help they needed. Most teachers will do what they can to make sure your child gets some sort of help. Make sure you are talking to your teachers so that you can work together and come up with some sort of game plan to help your child thrive in school. It’s also good to teach them how to help your child should they have a seizure while in their care. If your child’s school doesn’t have the proper resources to help your child you may have to hire a tutor or be prepared to spend time helping them study or do homework. You may be able to find a way to teach your child that helps.

3. Don’t be afraid to question doctors

It’s important to really work with your doctor to find the best possible treatment for your child, but sometimes doctors suck. Let’s face it we all have had at least one experience with a bad doctor. Hopefully, that experience didn’t cause any real damage in the long term. So it’s important that you find a fantastic doctor that listens to you.

A good doctor knows that it’s important to listen to the parents and child to find the best treatment. The doctor may be the expert on medical treatments but you are the expert on your child and every child is different. A good doctor will also take the time to thoroughly explain any treatments and the why behind them and any possible side effects. Ideally if you can find a doctor that explains so well that you rarely have a question that is best. Should you have questions a good doctor will answer them without irritation but with empathy and understanding.

Beware of doctor’s who question what you have to say. They insinuate that your child may be faking. Who won’t take anything you have into consideration. If a doctor isn’t willing to work with you try to find another one that will listen and work with you as a partner in your child’s medical care.

4. Be Your Child’s Safe Place

Struggling with epilepsy can cause a lot of emotional distress on your child. It can make then unsure and it can be easy for them to lose motivation. It is also common for those with epilepsy to struggle with depression and other mood disorders. So your child may need subtle reminders now and again that you are always there for them. As a child, I often tried to tough it out alone because I didn’t want to burden my parents with my problems. I did this in spite of them always being there for me. It can be hard for a child to open up to mom and dad.

So just go that extra mile to show your support in whatever way you can. It might mean leaving small notes with their stuff saying things like: ” You can do this!” or “I believe in you!” and other corny sayings. It may seem corny and they may even roll their eyes but it sends them a message that you are there for them. It can be as simple taking five minutes each day to just spend time and talk with your child. Remind them you aren’t just mom but a person that loves hanging out with them. While it isn’t always a good thing to be your child’s friend there are other times when they need you to be a friend. Practice knowing when to be the mom and when to just be a friend listening. It can be hard to master this skill but it’s worth doing.

Helping your child navigate the world with seizures can be very difficult and challenging. Every child is different and how a parent does this will vary from child to child. Being your child’s cheerleader and not letting them give up when it gets really hard is a tough job sometimes, but if you stick it out for them. Your child has every chance at a happy, full, healthy, and independent life. You just have to help them fight for it!

A Beginner’s Guide to Seizures

A Beginners Guide to Seizures

 

When most people think of epilepsy or seizures they think of those big seizures that they see in movies or television (a very inaccurate picture by the way). You know the scene where some actor or actress falls to the ground, starting foaming at the mouth, and begin to shake on the ground. While this does represent one kind of a seizure it is important to know there is more than one kind of seizure and if you aren’t informed and know how to spot them then you may not be able to get the help someone may need. So below is your quick guide to seizures. We will save the kind you probably already know for last.
 

Absence Seizure

The absence seizure is by far the hardest to spot. (Note the person in the video is not me. I found this on YouTube) We theorize I had been having these for years before I was officially diagnosed. We had no idea I was having them. A person having this kind of seizure mentally checks out for about 15 seconds. It is not unusual for a person with these to have over 100 in a single day. When you add all those up you can understand why this might be a problem. There is all this lost time you can’t account for. Because of this kind of seizure my school grades suffered tremendously. I missed key parts of the teacher’s lesson, homework assignments, and teacher’s even thought I was ignoring them on occasion. I went from a B student to barely being able to maintain a D. I was missing so much of my classes that I just couldn’t keep up. I would literally cry over the homework I couldn’t comprehend or be in tears when I found out I was missing a whole slew of assignments. So if you look at a person and their eyes just seem empty, like they aren’t there, and seconds later they are back to “normal” it is possible they are having absence seizures. Ask them if they have seizures or if they heard what you said. It’s possible they aren’t aware they are having them and you could be the reason they go get checked out and receive the help they need.

Simple Partial Seizure

The simple partial seizure can throw someone off when they see one. During this one the person having the seizure is conscious and in many cases can talk well enough to tell you what is going on. They may be a bit shaky, sweaty, and their emotions may even be altered a bit. Afterward, it isn’t unusual for them to be tired. They will most likely just want to go home after one of these and unless this is a first seizure for them it shouldn’t be necessary to call 911. Instead, call a family member or friend who can come pick them up and take them home. The epileptic’s first priority is always resting as seizures are often exhausting. They will talk to the doctor at their earliest convenience and any tests or changes that need to be made will be made. The above video shows an actual simple partial seizure.
 

Complex Partial Seizure

Complex partial seizures look similar to the simple partial but affect a larger portion of the brain. Because of this the person having this kind of seizure isn’t really conscious. They may continue to stand but mentally they aren’t there. When I had these I was often confused afterward and emotional. I would usually a need at least 24 hours to recover. The above video shows a complex partial.
 

Atonic Seizures(Drop Seizures)

This one doesn’t long about 15 seconds. It is just a brief loss of muscle tone which causes you to fall or for your head to drop. Thinking back on it I had these and didn’t realize it. I just chalked it up to my clumsiness. Just make sure they are okay and help them back up.

 

Clonic Seizure

Clonic seizures as seen in the video above are known for their rhythmic jerking. This would be the main symptom and this kind of seizure is much rarer. These can typically last one to two minutes. The jerking here is more regular and sustained than a myoclonic seizure. For this make sure there is nothing in the way they could hurt themselves on and when the seizure ends roll them onto their side. Call a loved one or friend to come to get them. This person will know whether a hospital trip is necessary or not.

Myoclonic Seizure

Myoclonic seizures are very brief and are the short contractions of a muscle group. Like the arms as pictured in the video above. Just wait patiently for the seizure to end, check to make sure they are okay when it’s over, and contact a loved one or friend to come to get them.

Tonic Seizure

https://youtu.be/-zE8x0OCq5M

These seizures are characterized by a stiffening in the body. They don’t usually last long and don’t usually need first aid unless they lose consciousness. You will want to make sure that someone who knows about their condition knows, but if they are an adult they may very well be able to handle things on their own. Although if you ask how you may help they won’t mind.

Tonic-Clonic/Gran mal Seizures

These are the seizures you may be more familiar with. The video above pretty much covers it all. The person may be very tired and will want to sleep after. Please don’t call 911 unless absolutely necessary as stated in the video. Doing so when it is not necessary will just keep them from getting the rest they need!
 
There is your crash course on seizures. Hopefully, you are more prepared to spot one and help if necessary. November is Epilepsy awareness month. Share this to spread awareness and wear purple in November to show support! Warriors with A Pen will be selling Epilepsy Awareness Swag in the near future! Please like our Facebook page or keep an eye on our website to be the first to know when they are for sale!