What if My Child with Epilepsy gets COVID-19

In the broad scheme of things, we know VERY little about this Novel Coronavirus. Rumors are circulating regarding the virus's ability to evolve quickly, leaving parents and caretakers of people with epilepsy very nervous. The truth is the CDC and the W.H.O. know very little about this virus, and there hasn't been enough time for scientists and the medical community to research this outbreak. 

What we know is based on what is happening in other world communities, and so far, the virus seems to be less severe in our younger populations. COVID-19 being less severe for children is welcome news for parents of school-aged children, especially those of us with illness triggers for their epilepsy. 

What if my child catches COVID-19:

The CDC and W.H.O. tells us that epilepsy alone does not increase your chances of getting a more severe case of COVID-19. Other mitigating factors, such as immuno-suppressing medications, other underlying health conditions, or other neurological factors, can impact your health should you become ill with COVID-19. 

For many people with epilepsy, fevers are a trigger for more frequent seizures. For my daughter, fevers and illnesses are one of her primary triggers for seizures. Febrile seizures are the primary reason she went undiagnosed for so many years. 

High fevers are one of the symptoms of this new coronavirus that is spreading rapidly across the globe. So, while epilepsy alone doesn't increase your risk of severe disease, getting sick with COVID-19 can increase your chances of more frequent seizures. 

Taking as many precautions as possible to avoid spreading COVID-19 and getting sick with COVID-19 will help you to prevent an increase in the frequency of seizures. 

As this pandemic was starting to take hold in the United States, we filled our daughter's prescription for seizure medication. We also made sure we had Ibuprofen and Tylenol on hand should she get sick. My husband still has to work, but the kids and have stayed home for the last week, and we will continue to stay home. 

We live in Illinois, and we are currently under a shelter-in-place order from our governor. I've had friends ask for play-dates, and people want to visit, but knowing I have a child with an underlying medical condition, I've had to say no to these requests. 

What We're Doing to Stay Busy: 

I work from home as a writer. Writing has become increasingly difficult with my kids home with me full time. While I am thankful I still have the means to earn money while home with my children, I did not account for the decrease in productivity. My husband is home on the weekends, so I find myself using the weekend time to get my writing projects done while my husband preoccupies the kids. During the week, I am responsible for meeting my deadlines, schooling with the children, and spending time with my children. 

We've been: 

• Baking (I am almost out of flour and stores are low on supplies)
• Crafting (This morning we made bird feeders with birdseed and honey)
• Snuggling and watching movies (I don't want to admit how many times we watched Frozen II this week)
• Schooling
• Playing outside and cleaning up the yard (We still have cold temperatures, so our outside time is somewhat limited) 
• Reading books
• Video Chatting with friends
• Coloring (So much coloring) 

This week, I think we will focus on tidying up our bedrooms, and my daughter is itching to get out the paints and do some painting. We are looking at the possibility of schools being closed for the remainder of the school year. My Amazon cart is ready with planting supplies to start some seeds indoors. 

If you have any ideas, share with me what you're doing to keep your kids busy and engaged during this crazy time! 

-Abby, Guest Blogger

Do substitute teachers need medical info about students?

Do substitute teachers need medical information for the individual students?

This question recently became a reality for me as I handled a medical emergency in class while subbing in a 5th-grade math classroom.

Last week, a student had a seizure in my classroom. I was not aware of her seizure disorder and that seizures had been occurring more frequently in school. I would have loved to be more prepared for the possibility of her having a seizure in class.

Am I entitled to that information as a substitute teacher?

As a parent of a student with a seizure disorder, I would be upset if the adults in charge of my kid were not made aware of her potential to have a seizure in class. Her medical information ought to be provided to subs if the potential for it to affect their classroom exists.

I was subbing in a 5th-grade math classroom. During independent practice work time, I was assisting a group of students, and all of a sudden, several students came and got me. A student in my class was having a prolonged absence seizure. Thankfully for that student and me, I have experience with that type of seizure because of my daughter.  I am proud of how her peers knew about her condition, reacted to the situation correctly, and got her help when she needed it. My concern, though, is what if she were with a sub who did not have experience with absence seizures. What if the sub felt she was being defiant or having a fit?

This student was unresponsive, but her eyes were open, and her arms crossed as if she were protesting something. After making her safe and sending students for another classroom teacher to help, we were able to call the nurses and principals down and get her the medical attention that she needed.

Despite my experience with seizures, I was overwhelmed by the experience, and it took me about 30 minutes to calm myself down. Not only was this my first classroom emergency, but I was not aware that this child had a seizure disorder.

I later found out that this student has been having seizures in school more frequently and had two in school the week prior. While I understand privacy requirements, as a substitute teacher in her classroom, this information would have been beneficial for me to keep an eye on this student while she was in my class.

This situation made me wonder about the guidelines for providing substitutes with pertinent medical information about students.

I have been in schools where this information is available in the sub binder regarding individual students with medical and behavioral needs. Teachers don't consistently provide this information to subs. Information regarding a student's seizure disorder was not provided to me as a sub when it was needed. To me, this is a problem.

As parents, how do we make sure our kids' pertinent information is provided to the adults in charge when they need it? 

-Abby, Guest Blogger

Teachers Are Not Aware That She Has Epilepsy

In addition to freelance writing, I work part-time as a substitute teacher in my kids' school. I have a background in education, but I chose not to teach full-time, in part because of my child with epilepsy. I need to be available to her in an emergency. Substitute teaching allows me to stay involved in education and have a flexible schedule for my kids. My son is in kindergarten, and my daughter is in first grade.

Teachers don't always like it when parents substitute teach, and I can understand that. Any person with any bachelor's degree can obtain a subbing license, and parents don't always make the best subs. My background in education puts me at an advantage. I know how to teach.  I've developed a reputation for being a qualified sub in the building, and I think they like me.

Telling People She Has Epilepsy

I was recently subbing in kindergarten for my son's class. One other kindergarten teacher and I were discussing our kids while at recess duty. My daughter went through kindergarten last year, and this teacher was shocked to find out that my daughter has epilepsy.  I was surprised by this for a couple of reasons.

First, the kindergarten teachers work very closely together. The teachers create lesson plans together and get to know the entire kindergarten team, not just their own classes. Last year, my daughter's teacher knew that she has epilepsy, but it turned out the rest of the kindergarten team wasn't aware. I found myself concerned that if my child had a seizure in the presence of one of these other teachers, that they would not be able to handle seizure protocol.

Absence Seizures Don't Look Like Seizures

My other concern involves my daughter's behavior in school. Absence seizures are often misdiagnosed as ADHD. Frequent staring spells can look like absent-mindedness or not paying attention. Should another teacher see my daughter staring off in the hallways, would she be disciplined rather than helped?

Should I Change my Approach With School Staff?

My interactions with this teacher made me reconsider my entire approach when it comes to my daughter's epilepsy and school. The nurse reassures me every year that the necessary adults with be made aware of her medical needs and seizure protocol. Perhaps that doesn't include the entire team of teachers in her grade.

It would comfort me to know that all of the teachers in her grade were aware of her medical needs. They need to know for field trips, recess duty, and even for times when the classes switch around to other classrooms.

I need to develop a plan to provide information to all of the teachers she interacts with daily, and even those she doesn't.

If all goes as planned, next year we will be trying to wean her off of her seizure medication to see if her seizures return. It will be especially crucial for teachers to be able to let us know if they see anything that resembles an absence seizure.

So, it looks like I will be working on a plan to provide information and materials to the second-grade team. Luckily for me, my friend Vikki has written a book with tons of resources for parents when dealing with schools and epilepsy. 

What kinds of conversations have you had with school staff regarding your child's epilepsy? 

-Abby, Guest Blogger

Epilepsy and Activity Restrictions

After overcoming the initial shock of an epilepsy diagnosis, one of the next things to come to terms with is all of the physical activity restrictions you have to impose upon your child. Kids with epilepsy are subject to activity restrictions that can impact their childhood.

A seizure action plan (SAP) is a packet of papers you receive from your child's doctor. In the SAP, it details the type of epilepsy your child has, the medication(s) they are taking, common seizure triggers for your child, and other information about caring for your child with epilepsy. One of those pages on the SAP will have activity restrictions for your child. Your child's teachers and other caregivers need to be aware of these activity limitations.

The activity restrictions can be heartbreaking for a parent.

Absence seizures are brief, quiet, seemingly innocent periods of...well, absence. Many people call them staring spells. When my daughter has an absence seizure, she will stop talking mid-sentence and stare off for a few seconds. A staring spell doesn't seem so bad, but my daughter has no recollection of what happens during those brief moments.

An absence seizure on top of a 6-foot horse could be catastrophic if a child were to fall off or tangle their legs in the reins. An absence seizure while swimming could cause my child to inhale water and wake up in panic underwater, not knowing what is going on.

An absence seizure mid-air on a trampoline could cause my child to fall incorrectly and sprain an ankle, or worse. A staring spell while balancing on a tall balance beam or dangling from the monkey bars could cause my child to fall and hurt herself.

These are the types of activities you don't think of until your doctor starts spelling out all of the things your child CAN'T do.

As a parent, we want to make the world accessible to our children. We want to make every possibility a reality for our kids. Facing a long list of the things your child can't do makes that difficult for a parent. My job is to keep my child safe and teach her how to take care of herself.  I have to break her heart when she asks to play contact sports or requests a trampoline for Christmas. I have to explain to her why she has to sit out when her gym teacher decides to teach a gymnastic unit in school.

Last week I talked about teaching my child that her epilepsy makes her unique. Keeping her confident is not always easy in the face of all of the things her friends and peers can do, that she cannot.

My daughter can't climb mountains or skydive from planes, but she will find her place in this world, and she will be amazing. 

-Abby, Guest Blogger

Coping With An Epilepsy Diagnosis

Although we suspected it for a while, receiving the official epilepsy diagnoses for our 6-year-old daughter was a shock. The moment the doctor confirms the diagnosis, your mind begins a marathon going through every possible scenario, outcome, and question you could have. In those first few moments, it's challenging to consider the first and next steps when you're already thinking about the worst-case scenario for your child. This is especially true if you're an anxious worrier as I am.

My husband has a strong family history of epilepsy. His mother, his sister on one side, and his aunt, on the other side, all have forms of epilepsy. So when our daughter spent four years suffering from complex febrile seizures, we suspected epilepsy was involved. It took four years for a pediatric neurologist to take steps to perform an EEG finally, despite none of her seizures occurring outside of a fever. For four years, we held on to hope that perhaps they were just febrile seizures, knowing she had all three of the significant risk factors for epilepsy.

As prepared as we were, finding out definitively that she had epilepsy removed any of that hope. With the official diagnosis came medications, side effects, seizure action plans, and rules about what she could and could not do. It was overwhelming. As parents, we had to cope all while helping our daughter to understand and to cope with something going on in her brain.

Getting a Therapist Involved

We took our daughter to see a therapist. We needed help teaching her to cope with the possibility of having epilepsy for the rest of her life. We still don't know with certainty if she will be able to outgrow her childhood absence epilepsy. While it's possible, there is no certainty.

The therapist sat our child down in front of a whiteboard and drew pictures of the brain. She explained neurochemicals to a 6-year-old in a way that we would not have been able to. She brought out a plastic model of a brain and allowed our daughter to take it apart and put it back together again. This therapist explained to our daughter that all people have differences, and despite those differences, medical or otherwise, everyone is unique and special. Epilepsy was part of what makes our daughter unique and special. In several therapy sessions, our daughter was empowered by what made her unique, and we had tools to use when asked questions about her "apple-epsy."

If you're struggling like we were with the diagnosis for you or your child, a counselor or therapist is a resource that you can tap in to and give yourself and your child the tools in their toolbox to cope with a frightening and confusing diagnosis.

Sometimes as parents, we don't have all the answers, and we are not able to best explain things to our children when we are scared and confused ourselves. Therapy has been an invaluable tool for our entire family, and it could be for yours too.

-Abby, Guest Blogger

What to Expect During an EEG

As I've noted before, it took four years of seizures for our daughter to be diagnosed with Absence Epilepsy. Her first EEG was when she was two years old after a series of complex febrile seizures that resulted in a one-week hospitalization in a children's hospital. Our daughter has never been put through a 24-hour EEG thankfully, so I cannot speak from experience with that length of an EEG, but she has had several 1-hour EEGs. 

Our daughter has been sensitive and picky since birth. Unless her conditions are ideal, she will not sleep for us. She was never one of those babies who could fall asleep anywhere. She had to be rocked or nursed to sleep. Even at two and three years old, we were rocking her to sleep for naps and bedtime. It was exhausting. An EEG requires that the patient be asleep for part of the test so they can monitor brain activity during sleep. 

What is an EEG

EEG stands for Electroencephalogram. It is a diagnostic test that measures electrical activity in the brain. Since seizures are electrical disturbances in the brain, EEGs diagnose and monitor seizures and epilepsy. 

With an EEG, a neurologist can tell if seizures are occurring, if epilepsy is present, and (hopefully) what type of epilepsy. 

Our EEG Experiences

6-year old waking up from EEG

Our first few EEGs were difficult since Ollie was so young and so sensitive. The techs begin by gluing electrodes to her head. An EEG can have as few as four or as many as 250 electrodes. The tech measures Ollie's head and marks her head with a grease pencil for placement of the wires. Then a special glue is used to secure the electrodes. The electrodes hook to wires leading to the machines running the test. Then her head is wrapped with gauze to keep things in place.

During the EEG, they test several situations that could induce or trigger seizure activity. (They call these "activations".) The most common conditions are flashing or strobing lights, and hyperventilating. For our EEGs, they've always asked us to have Ollie wake up at 4 or 5 a.m. the morning of the test so she is sleep-deprived. Sleep deprivation can also be a trigger for abnormal brain activity. So imagine waking up your 2-year-old in the middle of the night and then asking her to tolerate electrodes glued to her head and then put her through all kinds of uncomfortable conditions. For the last part of the EEG, the patient falls asleep so the tech can run the EEG during sleep to check for brain activity during sleep. 

So we have a sleep-deprived, irritated, already bad sleeper of a two-year-old that we're supposed to get to take a nap with electrodes glued all over her head. Easily done, right?

When Ollie was hospitalized the first time, I had to stand and rock her to sleep in my arms with the wires from the EEG hanging all over the place. Then gently attempt to place her down on the bed once I was sure she was asleep for the remainder of the EEG. For us, the sleep portion is the most important because that is when our daughter tends to have her absence seizures. 

Now at seven years old and having gone through at least three EEGs every year, Ollie is an expert at this test. She knows exactly what they are going to do. During these EEGs are the only times she will willingly nap for me during the day! Her most recent EEG in December 2019, was the first EEG that has not shown any seizure activity since her diagnosis. Normal EEGs means that if her next few continue to come out normal, we will discuss weaning her off of her seizure medications. 

Her next EEG is coming up in May. We travel two and a half hours to Chicago to see her pediatric neurologist. We tend to make these trips to Chicago a fun day for our kids; in December we went to the Chicago Museum of Modern Art. We are thinking about the aquarium with this next trip. 

-Abby, Guest Blogger

Side Effects of Anti-Seizure Medications

The one thing every parent wants when facing an epilepsy diagnosis is answers to all of your questions and concerns. You want to know everything there is to know about the condition and the medications that treat epilepsy. The problem with that, though, is even doctors and scientists don't understand why seizure medications help to prevent seizures. What they do know is that the medications alter brain chemistry and the electrical impulses in the brain.

Brain Chemistry and Mental Health

What doctors also don't always emphasize is that these seizure medications can come with some pretty significant side effects for our little ones. Seizure medications cause the activity between the brain's synapses to slow down. While preventing or lessening seizures, they can also cause your child's cognition and memory to slow down as well. Anti-seizure meds can cause our kids to struggle in school.

The mental health side effects of seizure medications can be scary. When my six-year-old told me that she wanted to kill herself, I was more scared for her than I had ever been. No six-year-old should ever feel that way. Anti-seizure medication can lead to suicidal ideations and issues with anxiety and depression. The medication that helps our children lead healthy, seizure-free lives, can cause our children to suffer from mental health problems. These medications can alter the brain chemistry for patients who take those medications. Mental health issues result from chemical imbalances in the brain. So while we are fortunate enough to have help with our child's seizures, her little mind is dealing with so much more than any child ever should.

My daughter is seven and suffers from issues with impulse control, temper, severe anxiety, sleep problems, and has had some suicidal ideations. Luckily for us, behavioral therapy has been beneficial for her. It hurts our hearts, seeing her suffer from these side effects that we know are in part due to the medication she has to take to control her seizures.  We have chosen not to play around with her medications too much because they are controlling her seizures so well. Our daughter is fortunate in that she may outgrow her childhood absence epilepsy if we can keep her seizures under control. So we take the adverse side effects in the hopes that they are only temporary, and she will be relieved of these side effects when we can wean her off of her seizure medications.

Advocate For Your Child

Not all families are in that same situation. If the adverse side effects of your child's seizure medications impact your child's daily life, you can and should explore other medication options. There are fewer medications for absence seizures than there are for other types of seizures, but you do have options.

-Abby, Guest Blogger

Teaching Children with Epilepsy

During my teacher training, we learned teaching strategies for students with special needs. We became quite fluent in the 13 disability categories. Those 13 disability categories do not explicitly list epilepsy, but epilepsy can affect your child's learning.

Special Education teachers receive much more in-depth training on dealing with children with medical disabilities and other types of disabilities. The problem, however, is that Special education teachers are spread thin in most schools with heavy caseloads. My philosophy is general education teachers ARE special education teachers, whether we like it or not.

Many general education teachers assume that their special education teachers will help them teach their special education students, but this isn't always the case. As a general education teacher, my special education students are MY students, and it's my responsibility to research and learn how to teach those students.

What can you do as a parent?

First, educate your child's teacher. Let them know that your student has epilepsy. Tell them what that will look like in their classroom and what they should look for in your student's performance. Always maintain regular contact with their teacher. 

What should teachers do for students with Epilepsy?

As a teacher, know that you are not only on the lookout for seizures but also the side effects of epilepsy and epilepsy medication. Students with Epilepsy can suffer from:

• Attention issues
• Cognitive deficits
• Memory problems
• Behavior issues
• Problems with impulse control
• Anxiety and depression

Epilepsy is not just about seizures, although that part does suck.  

As a teacher or a parent, a few simple strategies can help you to teach your children or students with epilepsy. 

• Frequent repetition of materials
• Redirection and reminders
• Cues
• Memorization strategies, such as mnemonic devices
• Extra time for tests and assignments
• Non-timed assessments
• Scaffolding or breaking tasks into smaller chunks
• Visual and auditory examples
• Written and oral directions
• SEL or social emotional learning. SEL strategies can help all students but especially our medically and emotionally sensitive students. 

Differentiating your instruction to meet the needs of all of your students ensures not only a better classroom culture for everyone but especially for our medically sensitive students.

What About Medical Training for Teachers? 

I went through my teacher training in 2011 and 2012. I went through an additional 18 credit hours of master's level teacher training during 2018 and 2019. I have taken two courses on teaching students with special needs. Not once in my teacher training was I asked to get my CPR certification or any other medical response training. 

That doesn't mean teachers aren't CPR trained, but CPR certification isn't part of teacher licensure in many states. Most districts have a certain number of building staff who are CPR certified and trained to respond in medical emergencies. Medical emergencies are also a topic for many teacher trainings during those beloved in-service days. 

I know I would feel better knowing that the staff in my daughter's building were better prepared to respond in the event of a seizure.  While most seizures don't require CPR, it can happen.  My daughter had one seizure during an illness where she had vomited just before seizing, and her airway needed clearing after her seizure had stopped. Luckily my husband is CPR training annually and responded correctly in that emergency. 

What can you do? 

As a parent, stay involved, stay up-to-date on teaching strategies, and advocate for your child. Teach your child's teacher seizure protocol, and print out handouts for any staff members that are regularly with your child. 

 As a teacher, ask questions, get to know your students and their family, and involve your student and their families in the educational process. 

-Abby, Guest Blogger

Seizures and Bullying

What would happen if my daughter had a seizure after raising her hand to answer a question in class?  

A seizure for my daughter looks like a long pause, a staring spell. To some, it might look like she forgot what to say, or didn't know the answer. 

If you haven't stepped foot in an elementary school lately, you should.

I regularly substitute teach in my local elementary school. Recently when subbing for a gym teacher, I had two students hit me from behind with a pool noodle during a game of "octopus tag." 

 Kids are brutal.

Like our ancient ancestors, kids make up stories to explain the unknown. An absence seizure that happens in front of the class can take on wings and fly off into the realm of exaggeration and storytelling very quickly in a school setting. Kids have very little impulse control, and they say what they feel without having developed any empathy. 

My daughter might not even realize she has had a seizure in class when all of a sudden, her peers ask her questions about what is wrong with her. 

Low self-esteem is more common for students with medical conditions. The side effects alone of anti-seizure medication can cause issues with self-esteem. Now that vulnerable child has to navigate the social ups and downs of a school setting. 

How do we prevent our seizure-prone kids from suffering in school? 

Teachers can be a huge advocate for the students in their classrooms who are different. Embracing a classroom culture that acknowledges, supports, and encourages differences is a significant first step. 

The building of an inclusive classroom culture is one of the single most important factors in creating a culture of kindness and acceptance among students. These kids are together every day, they have to be taught by their teacher how to work as a community that is positive for all students. 

A seizure can be a scary thing to watch. Kids may try and redirect their fears by using humor, and this can quickly lead to one or more students with hurt feelings. When a teacher has a classroom culture that encourages open discussion and the honest asking of questions, this fear is less likely to turn into bullying. 

As a teacher and a parent, I encourage my child to be open about what a seizure might look like for her. By being able to explain to her peers what a seizure is, empowers my child to address their questions head-on and prevent any potential rumors.  

Every child, regardless of their medical status, is entitled to privacy. Sometimes my daughter doesn't like talking about her "Apple-epsy." But explaining what epilepsy is and what seizures look like to a classroom of curious kids can prevent your student from having to deal with rapid-fire questions from their curious classmates after a seizure has happened. 

It is so important to share your seizure action plan with any adults that may encounter your child throughout their day. Educated adults can help address student curiosity for your child in the event of a seizure. 

We all know what curiosity in kids can lead to. Knowledge truly is power in these types of situations.  

We've worked hard to help our child be able to explain what epilepsy means and what a seizure is. We've done this to empower her to address situations that could impact her negatively in school. 

If you think your child is being bullied because of their epilepsy or for any other reason, don't hesitate to get the school involved. 

Abby
Guest Blogger 

NOTE from Vikki: Even when a child tells you to not get involved because it could make things worse, you still need to report bullying behavior - - by student OR staff - - to the Principal or even the School Board. Consider also filing charges with the police department, especially if the child is hurt in any way. Keep a paper and voice-mail trail. You don't WANT to sue someone, but ... just in case.

Remember, YOU are your child's best advocate. 

Explaining Epilepsy to Kids

One of the hardest parts for a kid coping with an epilepsy diagnosis is understanding what is happening to their brain. Being able to explain epilepsy is empowering for a child. As parents, we care about our children and their self-esteem. Receiving a diagnosis like epilepsy can be confusing and frightening for a child.

Our daughter received her epilepsy diagnoses during kindergarten.  Hearing that you have something going on with your brain is confusing for a 6-year-old.  She kept asking if her brain was broken or sick.

To help her understand her diagnosis, we told our daughter that her brain was having hiccups. Our daughter has absence epilepsy, which most of the time manifests as short quick staring spells. The metaphor came to me on the fly, but it luckily seemed to resonate with her. When talking to my 6-year-old, I wasn't as concerned with the medical accuracy of my explanation as I was with helping her to wrap her little mind around some big and confusing concepts with her health.

Luckily for us, my husband gets hiccups a lot. My daughter was quite amused by the hiccup metaphor.  I told her that the medication she was taking for her "apple-epcy," as she calls it, is going to help her brain stop having hiccups.

We've stuck with this way of explaining her epilepsy to her, and it came full circle a year later when I overheard a conversation between our daughter and her little brother in the car. It went a little something like this:

Son: "Is your brain sick?"
Daughter: "My brain isn't sick! It just has hiccups, and my medicine keeps those hiccups away."

Hearing her able to articulate to her brother what epilepsy meant to her made me so happy. She didn't shy away from the question. She put her brother right in his place and explained to him her epilepsy with confidence.

We try to talk openly with our kids about our daughter's epilepsy. There are times our daughter wants to keep it a secret from people, and there are times where she will sing it from the rooftops that she has something unique and different about her. We let her choose those times.

A recent trip to the eye doctor demonstrated her confidence again when she advocated for herself and let the technician know right away that she has epilepsy. Building her confidence and empowering her with an "explanation" for her epilepsy has allowed my daughter to not only cope with her diagnoses but begin to identify with it.

What are some ways you've explained epilepsy to your kids?

-Abby

Epilepsy and your Child's Education

UNITED STATES Info

Having a school-aged child with epilepsy is scary for a parent. When my daughter first started pre-school, I was nervous that her teachers wouldn't know how to help her if she started to have a seizure.

 I am THAT mom who annoyingly over-communicates with my kids' teachers. I am sure it's frustrating for the teachers, but it provides me peace of mind knowing that I've given her teacher as much info as possible on her seizure care.

 I am fortunate that I have a background in education. I know first hand what teachers and school nurses do to organize the medical information for their students. Most schools have an entirely digital system and a student's medical information is available to teachers with a click of a button. For schools that haven't gone paperless with student information, you may find yourself providing your child's teachers with paper copies of the seizure action plan and other important seizure protocol information. 

Personally, the biggest help to alleviate my anxiousness over my daughter's epilepsy was getting a solid understanding of what to do and how to react in the event of a seizure. Likewise, I like to make sure my daughter's teacher also knows exactly what to do if she has a seizure in school.  

As a parent, you are empowered when it comes to dealing with the school district and your child's epilepsy. Be the squeaky wheel and get the administration and school staff to listen to you and your child's needs. Luckily for us, we have federal law on our side when it comes to our kids' needs and their education. 

Depending on their circumstances, your child with epilepsy may be eligible for school services under an IEP Plan (Individualized Educational Plan) or a 504 plan.

Both plans are similar but more than likely if your child needs services for epilepsy, it will fall under a 504 plan.

IEP Plans: 

IEP plans are subject to IDEA or the Individual with Disabilities Educational Act. To be eligible for an IEP plan, a student must have at least one of 13 named disorders. Epilepsy falls under the category of "Other Health Impairments" under IDEA.  For your child to be eligible for services under an IEP in school, your child's epilepsy must affect the student's ability to learn and benefit from the general education environment. The evaluation process for an IEP must be able to document that epilepsy directly impacts the student's ability to learn. 

504 Plan: 

504 plans are subject to section 405 of the Rehabilitation Act. The Rehabilitation Act is a Civil Rights law that guarantees students won't be discriminated against for their disability. 504 has a much broader definition of what is eligible for services in school. The evaluation committee at your child's school can offer a 504 plan for a student if their medical condition or disability disrupts their daily activities in any way. The planning process for a 504 plan is much less formal than that for an IEP plan.

One of the advantages of the 504 plan is that you have civil rights legislation on your side. If you feel that your child's 504 rights are being violated, all it takes is one call to your local Office of Civil Liberties and your school district will straighten right up. 

Examples of situations where a student with epilepsy may benefit from a 504 plan: 

• Your student has a seizure during a test: A 504 plan would allow them to retake the test. 
• Your student's medications affect their ability to concentrate: They may be allowed extra time to complete assignments and tests. 
• Your student frequently arrives at school tardy. Your child often has to sleep later to avoid seizures upon waking. Under a 504 plan, they would be allowed to come late to school without being penalized by the school. 
• Your child frequently leaves the classroom to take medications or have "brain breaks." Under a 504 plan, your child would be allowed to do this without penalty. 
• Every teacher would be given training on epilepsy protocol in the event your child has a seizure. A 504 plan can even require that your child's substitute teachers are provided written instructions on seizure care and a list of staff names and numbers involved in your student's seizure care. 

Protecting Your Child 

School districts have an obligation to protect your child, but sometimes you have to demand those services. 

As parents, we are our children's biggest advocates. If you think that your child's education is affected by their epilepsy, you have the right to request an evaluation by the school for accommodations to ensure their academic and medical needs get satisfied.

Many times, teachers and school staff may not be aware of the extent to which seizures and anti-epileptic drugs can affect a student's education. 

For more information on approaching the school district about your child's epilepsy, check out Vikki's book, Seizure Information for Schools and Teachers. 

Sources: 

ADAAA & Section 504. (n.d.). Retrieved January 1, 2020, from https://www.ncld.org/get-involved/learn-the-law/adaaa-section-504/.

Individuals with Disabilities Education Act (IDEA). (n.d.). Retrieved January 1, 2020, from https://sites.ed.gov/idea/.

New Guest Blogger

Hello!

My name is Abby. Vikki has asked me to be a guest blogger. I am thrilled to come aboard this project because seizures indeed do suck!

For the last 7 years, I've been a stay-at-home parent to my two kids. My daughter, Ollie, has epilepsy. She was finally diagnosed with Childhood Absence Epilepsy after having seizures for four years.

It took four years of my husband and me pleading and insisting to her doctors that something was wrong with our child. We even have a significant family history of epilepsy, and no one believed us!

Despite having absence epilepsy, fevers trigger larger seizures for Miss Ollie. She is in elementary school, and elementary-aged kids are always sick with fevers. We have become vigilant fever watchers in our household.

I have a Master's degree in Education but have not worked a full-time job since Ollie was born. As many epilepsy parents know, it can be a full-time job.

Luckily, we have finally found some stability with her epilepsy, and I can do something for myself.

I work part-time as a substitute teacher in the same school district where my kids attend. I also work as a freelance writer. I have the flexibility to be there for my kids, and I get to stretch my intellectual muscles as a writer.

I look forward to being a part of this project and sharing part of our journey with epilepsy and seizures.

Best,
Abby