Seizures: Vital Information Your Child Needs for Going Back to School and More

By Teri Arranga
Contributing Writer
Kirkman Group, Inc.

During summer vacation, the call came. A mom. A friend. What do I say?

My mom-friend said: “We were at the beach. My son started having seizures…I’m scared. What do I do?”

Among all of the things that parents of developmentally disabled children have to deal with, seizures are at the top and among the most frightening and serious conditions.

There are different types of seizures. The kind that may be at the forefront of your mind is a grand mal seizure. defines a grand mal seizure (also known as a tonic-clonic seizure) as featuring “a loss of consciousness and violent muscle contractions….Grand mal seizure is caused by abnormal electrical activity throughout the brain.”

If you are reading this article because your child has seizures – of any kind – then I encourage you to bring a qualified healthcare practitioner on board right away. Your medical professional may have different advice for different seizure types. This article is not intended to be used as medical advice.

This article will cover many tips, including those for going back to school. After my tip list, please read on further to see valuable information from a school nurse and a veteran mom.

My first tip to my friend on the phone was to avoid the ocean since they were at the beach.

Tip two was never to leave her son unattended in a swimming pool or bathtub; and to have someone strong enough to prevent drowning present.


When going back to school with a child who has seizures, it is important to get organized. School days are busy with school runs, therapy appointments, work, housekeeping, family time, paying bills, grocery shopping, placing special orders . . . You may think many of the tips below are common sense and be tempted to skip over them, but don’t – common sense suffers when the pot on the stove is boiling while Junior and Sissy are squabbling and the telephone is ringing amongst other distractions. If you and your child’s doctor decide it’s necessary to begin anti-epileptic drugs (AEDs), then you will do well to implement extra measures to ensure proper timing and dosing of medication. Here are some tips:

1) Get a days-of-the-week pill tray that can be found at many pharmacies, and each morning when things are quiet before the busy day gets in full swing, place the prescribed pills in the designated time slot for morning, afternoon and evening as appropriate (you may even want to mindfully double-check the doses before dispensing). This way, in the midst of busy times, you can feel confident as to whether you administered the meds or not. You can also ask the pharmacist for clean, new, empty prescription vials and label them with sticky notes for morning, afternoon and evening instead of using a days-of-the-week pill tray. Pharmacies also sell miniature, airtight baggies for medication doses. If you don’t want to use pill trays, vials or the baggies, designate a special post-it pad, calendar, wall chart or email method where you reliably note every time you’ve given meds; you can print a chart in advance and simply make check marks – it’s easy, but it needs to be a habit. (Or you can ask Kirkman® to add its supplement tracking dry erase board to your next order. It comes with a magnet so that you can stick it to your refrigerator where it’s convenient to use.)

2) Set an alarm clock with a backup. Your cell phone alarm may not ring. There may be a power outage to your electric alarm clock. Set two alarms – especially for the morning wakeup – so that anti-epileptic drug administration is done on time.

3) Things happen #1: You could get a flat tire on the way home from the school pick-up. Make sure that you have the next appropriate dose in your purse if Junior is in the car.

4) Things happen #2: You could get a flat tire on the way home from work while Junior is with the sitter. Make sure that anyone watching your child knows where the next clearly labeled dose of medication(s) is and knows how to administer this successfully to your child. The caregiver must be paying attention: if the child spits one out and it rolls across the floor, you need to know which one. Administer meds so that if anything drops, it will be easy to find promptly before the child does. You do not want to give too much. You do not want to give too little. You want to give what is necessary and appropriate.

5) Things happen #3: An emergency trip could come up, necessitating another family member giving meds for a number of days. Optimally, you would have planned ahead for this and apportioned pills, using the days-of-the-week pill tray, vials or miniature airtight baggies clearly labeled with the day and time of day to give. But, if not, have a clear place to keep your child’s prescription medications with a list for morning, afternoon and night of which pills are given, the dosage, the quantity and what each pill looks like, and review this with the person who will take care of your child in your absence.

6) If pills are time-released and prohibited from being chewed, wait until your child has swallowed any solid food in their mouth so they won’t chomp down on the pill.

7) If your child’s doctor has prescribed a partial dose of a capsule, you will need to empty veggie caps in advance to split the capsule. If you open capsules into pureed food in a bowl, be aware that the contents of some capsules’ contents may stick to the bowl.

8) If your child is prescribed the medication using a rectal syringe to stop a seizure per doctor’s protocol, whoever is with the child – whether it is the schoolteacher, their school bus aide, you, Grandma or the sitter – should have access to the medication and should be instructed on how to administer the medication. All caregivers and school staff should follow proper storage and temperature control guidelines, such as on school outings in hot weather months.

9) Keep an eye on how many refills are authorized on the prescription bottle label and order refills early. Often pharmacies have to order medications or call the doctor for a refill order. Especially for compounded medication – and particularly when those are mail-ordered – call a sufficient number of days in advance.

10) If you don’t want certain color dyes on your child’s medication, you need to allow extra time to find a preferred supplier.

11) Get a medical alert bracelet or other similar item that your child will tolerate wearing and can wear safely.

12) You may be at work and get a call from school that your child is having a seizure; the car should always have enough gasoline to take you from wherever you are to wherever your child is, and you should have a set place to promptly find your car keys.

13) If the car is in the shop, then you need a way to pay for a taxi.

14) Be alert! If you are the person who will pick up your child at school in case of a seizure, then you cannot have wine at lunch with the ladies for Sallie’s going-away party. Being alert is a general rule of thumb whenever you are the primary caregiver in a special needs situation – especially seizures.

15) Be ready! If you are the person who will pick up your child at school in case of a seizure, then you cannot have your head stuck under a hair dryer at the salon with perming solution – you need to be ready to go! This is a general rule of thumb whenever you are the primary caregiver in a special needs situation – especially seizures.

16) If you have a special backpack ready in case of emergency excursions (e.g., Grandma in the hospital), keep a fresh dose of the anti-epileptic pills in this backpack, but out of the reach of the child and siblings. Do not store the backpack in the car trunk. Rotate this emergency supply so that it doesn’t expire.

17) While your child is at school or anywhere away from you, you should always have a charged cell phone that is turned on and on your person, preferably with a cell phone charger in your purse.

18) Make sure that people like camp personnel, exercise club childcare attendants and Sunday school teachers know how to reach you.

19) Climbing on playground equipment is now more dangerous due to the risk of seizure-related falls and consequent head and other injury: the child’s doctor, the school and you will need to make decisions about whether certain playground equipment is safe to use and, if so, under what circumstances (e.g., if the child can wear a helmet and be monitored by a 1:1 aide).

20) Include the child’s seizure protocol in the school IEP (Individualized Education Program) meeting – call for an IEP meeting immediately if need be.

21) As a general rule and especially when anti-epileptic drugs are in use, do not let your child access a relative’s alcohol-containing beverage at family gatherings like weddings or holiday events. Ask relatives to keep their beverages out of reach.

22) If your child’s liquid prescriptions, supplements, fish oil or probiotics are refrigerated and you are in an area of frequent power outages, have your local electric company make note of your house having special medical needs requiring electricity.

23) If you have medication in your child’s school backpack and the two of you go shopping or to a therapy appointment after school, don’t leave the backpack with the medication in a hot or freezing car trunk or leave it in the trunk overnight.

24) Check with the school on a regular and timely basis to ensure that any emergency prescriptions they have there are not expired and that you still have refills available on the prescription.

25) Make sure that your child’s seizure protocol from the doctor is up-to-date with the school and that medication administration permission forms and your emergency instruction card is current.


Kari Hale, RN, BSN, nurse for Giant Steps, kindly shared the following information with us:

Q: What are the two or three most important things a parent new to an epilepsy diagnosis must do for their child?

A: “I think one of the most important things is to find a doctor you feel comfortable with. Have a list of questions when you meet with the doctor, and observe your feelings. Do you feel rushed? Were your questions answered? You want to find a practice that can give you the tools to cope with the new diagnosis, help you learn how to keep your child safe and help you learn steps to take when/if a seizure occurs. Although seizures can be scary, it’s important to keep things as normal as possible.

“Communication with the school staff/nurse about seizure activity is extremely important. Your child spends a large portion of their day in school, and staff is often the first to notice subtle changes. Work with the school/nurse to develop a seizure plan (this is a plan put in place to guide staff on steps to keep the student safe should they have a seizure at school).”

Q: When parents are looking for a new school for their child who has seizures, what are the top concerns they should consider and questions they should ask a prospective school?

A: “I would find out if there is a nurse on staff and what training is provided to school staff. Again, make sure there is a seizure plan in place.”

Q: What should parents inquire about and have ensured during school bus rides to and from school?

A: “Have a transportation plan in place. This type of plan would include basic safety measures and emergency contact numbers. If I had a child with frequent seizures, I would inquire about having an aide on the bus.”

Q: What have you as a nurse found to be very helpful for kids with seizures or autism + seizures? Special diet? Anti-epileptic medications? And how do schools handle these things?

A: “Treatment is truly individualized. What works for one student may not work for another. If the student takes medication for seizures, it’s imperative that the medication is given consistently and on time. Missed or late medication is one factor that will increase the likelihood of a seizure. If your student requires daily or emergency medication, find out the medication administration policy of your school.”

“Again, communication between school and home is key. I talk with parents about seizure history and any behavior changes or things they have noticed prior to a seizure. This is extremely important for non-verbal students.”


Here is a personal account from Tina Carkhuff, mom to a 7-year-old boy who is on a special diet and medications in the Texas public school system. Tina shared these tips about important things she had to do and what her school’s protocol is for the bus driver and the school staff:

“Having accurate and detailed instructions from Evan’s physician, Dr. Richard Frye of the University of Arkansas/Arkansas Children’s Hospital, was the first step in developing a protocol for handling Evan’s seizures. The school nurse and the transportation division asked for volunteer staff to accept training specific to seizure response while Evan was on the bus. The goal was to have an aide specifically for Evan who would accompany him each day to and from school. Several aides were trained by the school nurse with the help of videos of seizing children found on pharmaceutical websites. A doll was used to show the aides how to administer medications in the event that Evan had a grand mal seizure.

The nurse packed a ‘Go Bag’ for Evan that contained a blanket, towels, wipes, pillow, alcohol cleanser, Evan’s medical history, our contact info and anti-seizure medication. The bag is taken daily by his personal aide in the event of a seizure.

Everyone who comes into contact with Evan is trained on how to treat a seizure and how to administer his medications. When Evan gets on the bus, he is accompanied by his personal aide. When he gets to school, every teacher he has contact with and every member of the front office staff are also trained. Even cafeteria staff is trained.

At the beginning of school and throughout the year, my husband and I work with the bus aides and the driver to let them know what Evan’s seizures look like. We do have video of his seizures that we show them, and we describe in great detail what he looks like just before he starts to seize. We discuss different types of seizures that Evan has — both petite mal and grand mal — so that they are aware that not every seizure requires emergency medicine. On a daily basis, we tell them how Evan slept and how his morning has been up to the time he gets on the bus. These daily discussions are necessary to not only make the driver and aides aware of what Evan’s medical needs are, but to give them awareness of his seizures so that an actual seizure won’t be traumatic for them.

We also work closely with his teachers and the administrative staff at the school. They all are engaged in Evan’s care, and through our discussions and their training, we have seen that anxiety levels are much lower. Initially, we heard a lot of ‘If this happens, what should I do?’ Now, we hear the staff confidently telling us that they know they can care for Evan no matter what.

We foster relationships with all of Evan’s caregivers so that throughout his school day, he is with people who understand his special set of circumstances.”

Thank you to Kari and Tina for their kindness in sharing their vital information.

I wish good health, safety and peace of mind to you and your child.