Check out links at the bottom for 504 plan info and more helpful forms for seizure disorders!
When I was a kid I remember a guy at school who had seizures. It was a whole big thing – we were out at recess and he had a grand mal seizure while playing soccer. I was too young to remember what happened after that initial seizure: did they call 911? Did they roll him over? All I remember is that he was the only kid I ever knew growing up who had seizures and he continued well into adulthood (still has them last I heard). My daughter knew one girl in school who took medications for seizures and learned all about them from her. When she moved on to college she had a friend on her dorm floor who would have frequent seizures and because she is the child of a nurse and also well versed in seizure management she was able to take charge when no one else knew what to do in their first few months of college away from home.
What does it mean to have a seizure disorder and how can we help manage that at school? A seizure is basically a disruption of the electrical signals in the brain. They come in many forms that you may have heard of such as absence (aka petite mal), tonic-clonic (aka grand mal). The two main ones that we see most frequently are:
Absence seizure: Also known as petite-mal seizure, a type of generalized seizure that affects both sides of the brain. The patient is unaware of what is happening. They tend to “zone out” for a period of time (like 20-30 seconds) and may stare, smack lips, or have fluttering eyelids. Afterwards they generally do not have a postictal state but don’t remember what was happening during the seizure. These happen in children ages 4-14 but have been seen in younger children also. They are often outgrown but until they outgrow it they are treated with medication to prevent worsening symptoms.
When a person has an absence seizure there isn’t really anything to do during it as often you may not notice that it started or stopped and they don’t generally have any symptoms afterward. If you see that they are having a seizure just keep an eye on them that they don’t progress into anything further like a tonic-clonic.
Generalized tonic-clonic: Also known as a grand mal seizure, this is what most people think of when they think of a seizure. The person will be unconscious, with shaking or jerking limbs and very stiff muscles. The patient can become injured from the jerking activity or from falling with the seizure or can often bite their tongue or lips during it. This person may lose control of bladder and/or bowels or vomit during their seizure. They are likely to have a postictal state that can last a few minutes or a few hours where they will be super tired or maybe have a headache. Often those who have been dealing with seizures for a long time can have an “aura” prior to the seizure that alerts them to it occurring. The aura can consist of things like smelling a specific smell, flashing lights that aren’t there, feeling of impending doom (sudden fear of something bad is happening), or general nausea.
When it is noted that a person is having a tonic-clonic seizure the first thing to do is start timing it. Note the exact time it started if you can. Generally, if the seizure lasts longer than 5 minutes you should be administering emergency meds and calling 911. Then you want to be sure to protect their head to prevent any further injuries. This just means placing a pillow or clothing or something underneath their head so they don’t hit the floor or any objects. Try and move anything out of the way that could injure them if you can but do NOT try to hold them down. Roll them on their side in case they vomit so they don’t aspirate on the vomit. Never put anything in their mouth to prevent tongue biting – that’s an old wives tale that you should place a spoon or a bite block in their mouth to prevent them from “swallowing their tongue” (that’s not a thing – it’s physically impossible.)
- Other types of seizures include:
- Focal Aware Seizure: Exactly what the name implies: a partial focal seizure that the patient is awake and aware but perhaps frozen and can’t move. Lasts around 2 minutes.
- Focal Impaired Awareness Seizure: A psychomotor seizure or a temporal seizure, similar to the focal aware but the patient has decreased awareness of the episode.
- Atypical Absence Seizure: Patient is not fully aware, may stop talking and stare, blink, moving lips. Lasts 5-30 seconds, often goes unnoticed.
- Atonic Seizure: “Drop seizure”, patient becomes limp, can fall to the ground. Generally lasts less than 15 seconds. These patients often require safety helmets to prevent head injuries from unexpected falls.
- Clonic Seizure: Patient is unaware, may have jerking motions of limbs. They are rare and mostly happen in babies.
- Tonic Seizure: The patient suddenly stiffens ie: muscle TONE increases. Lasts about 20 seconds, patient may be aware or somewhat aware during this.
- Myoclonic Seizure: Brief shock like jerks or twitching of a muscle group. They last generally a few seconds, very hard to notice often.
- Gelastic and Dacrystic Seizure: Gelastic can cause uncontrolled laughing or giggling, often called “laughing seizures”. Dacrystic is a “crying seizure” The patient is aware but can not control the emotional episode.
- Febrile Seizure: a seizure that occurs in children ages 3 months to around 6 years old when they have a high fever. These can often be full body convulsions lasting less than 15 minutes. They occur in 2% – 5% of children and can also run in families. They can not be treated with lukewarm baths or Tylenol and do not require daily medication. The patient may be prescribed a rescue medication like Diazepam for a seizure that lasts longer than 5 minutes.
- Refractory seizure: Seizures of any kind that are not controlled or easily controlled with medication therapy. Even with medications the seizures are frequent and sever enough that they interfere with every day life.
- Status Epilepticus: When a seizure does not stop by 5 minutes or more than 1 seizure within the 5 minute period without returning to normal level of consciousness between events. This is a medical emergency and needs immediate medical attention as it can lead to brain damage.
Common Medications: Most patients with seizure disorders are treated with a daily maintenance medication. It is important for the school nurse to know the dosages and time of day each medication is taken in case the patient is transported to the hospital. These are generally dosed by weight and a change in weight, even a minor change, can make a huge difference in side effects and efficacy. A lot of these medications can cause drowsiness, headaches, behavior or mood changes, or weakness. Often once the person has become regulated to the dosage they have less side effects but the nurse should be aware that these side effects are a possibility when changing doses or meds. These are some of the more common ones you might see used but there are many.
- Carbamazepine (Carbatrol, Tegretol, others)
- Phenytoin (Dilantin, Phenytek)
- Valproic acid (Depakene)
- Oxcarbazepine (Oxtellar, Trileptal)
- Lamotrigine (Lamictal)
- Gabapentin (Gralise, Neurontin)
- Topiramate (Topamax)
- Zonisamide (Zonegran)
- Levetiracetam (Keppra)
Emergency rescue medications: Medications used to stop a seizure. If a student has a known seizure disorder it is wise to have an emergency medication on hand for them in case of emergency. Check your state laws regarding who is able to administer emergency meds aside from the nurse.
- Diastat® – a diazepam rectal gel instructions for use
- Nayzilam® – a midazolam nasal spray
- Valtoco® – a diazepam nasal spray
- Klonopin (clonazepam) oral
It is very important to know how and when to use the rescue med for a seizure. *Generally* if a seizure is lasting longer then 5 minutes you will use the rescue med and call 911. Check the doctor’s orders for the medication and create an action plan with all the information for the individual student.
- Other treatments for seizure disorders
- Vagus Nerve Stimulator (VNS): an implantable device similar to a pacemaker that stimulates the vagus nerve. This device can reduce amount of seizures, shorten length of seizures and also stop an acute seizure. If a patient is having an acute seizure the device has a magnet that can be swiped over it to cause it to send a stronger signal to the brain to try and stop the seizure.
- Ketogenic diet: You may have heard of this revolutionary weight loss diet “Keto”. It was actually invented specifically to treat people with epilepsy and diabetes. It is a high fat low carb diet that causes the body to burn fats instead of sugars creating ketones in the body. They aren’t sure why it works but something about the ketones affects the brain’s functioning and lowers seizure frequency. There are risks to using this diet and it should be supervised by the doctor to be sure the patient is receiving the appropriate nutrients.
For my students with seizure disorders I keep a binder with each student’s information separated with dividers. I include a log to track their seizures at school, their action plan, their 504 information, and report sheets in case of calling 911. This way we have everything in one place to document and keep track.
Seizure Disorder 504 Information. In the interest of not reinventing the wheel, these accommodations are borrowed directly from the Epilepsy Foundation
- EXERCISE, PHYSICAL ACTIVITY, AND REST PERIODS:
- Physical education instructors and sports coaches must be able to recognize the
student’s seizures and assist with first aid.
- Responsible school staff members will make sure that any needed emergency AEDs
such as Diastat are available for student at the site of his/her physical
education class and team sports practices/games.
- School staff shall ensure that if student has a seizure and needs to sleep or
rest afterwards or otherwise needs to rest during the school day, he or she will have the
opportunity to do so in a safe, supervised, comfortable setting. The setting does not have to be the school nurse’s office, and supervision does not have to be provided by the school nurse, unless physician orders so require.
- Student will be permitted/suggested to wear safety helmet if prescribed by physician.
- KETOGENIC DIET
- Student shall have access to needed food and liquids as required
during the school day in order to maintain the protocol of the ketogenic diet.
- Student parent/guardian shall provide pre-measured supplies of food
and liquid to the school on a daily basis.
- School staff who work with student shall be trained regarding the
ketogenic diet so that violations of the diet do not occur at school.
- As appropriate, classmates of student shall be given information about
the ketogenic diet so that they do not share food with him/her.
- As appropriate, during class parties or celebrations with food, alternatives shall
be arranged for student that enable him/her to partake in the
celebration if s/he will be unable to eat or drink during the party time. Such
alternatives may include, but are not limited to, playing a special role in the
celebration, choosing music for the party, or being the “emcee.”
- VAGUS NERVE STIMULATOR
- School staff who work with student shall be trained regarding the
vagus nerve stimulator (VNS) and how it works.
- A staff person shall be identified who shall be trained to swipe the magnet over
- the VNS in the event that student has a seizure, as stated in the attached Seizure Action Plan.
- A log shall be kept of each instance in which the VNS is swiped and the parents shall be notified at the end of each school day in which a swipe occurred.
- ROUTINE ANTIEPILEPTIC DRUGS AND DIASTAT ACUDIAL
- As stated in the attached Seizure Action Plan, student shall be given his/her prescribed doses of AEDs in accordance with physician orders.
- School staff shall identify a person and a back-up person to be trained to administer Diastat or other appropriate emergency AEDs to student in accordance with physician orders, as stated in the attached Seizure Action Plan. A trained staff member shall be available to perform this task all times during which student is at school or attending a school-related activity or event.
- FIELD TRIPS AND EXTRACURRICULAR ACTIVITIES
- Student will participate in all field trips, extracurricular activities, and school-related activities and events (such as sports, clubs, enrichment programs, and overnight trips) without restriction and with all of the accommodations and modifications, including necessary assistance and supervision by identified school or contract personnel, set out in this Plan.
- Student’s parent/guardian will not be required to accompany him/her on field trips or any of these other listed events or activities.
- A trained person shall be designated to be available on site at all field trips, extracurricular activities, and other school-related activities and events to provide administration of any necessary medication in the event of a seizure, or any other seizure first aid as needed.
- The student’s AEDs will travel with the student to any field trip or extracurricular activity on or away from the school premises
- CLASSROOM WORK AND TESTS
- If student has a seizure during a test, he or she will be allowed to take the test at another time without any penalty.
- If student has side effects from AEDs that affect his/her ability to concentrate on schoolwork or tests, s/he may have extra time to complete assignments and tests without any penalty.
- If student arrives to school late because of an adjusted start time due to the need to wake up later to avoid morning seizures, s/he will not be penalized for work missed and will be given an opportunity to make up the work.
- Student shall be given instruction without penalty to help him/her make up any classroom instruction missed due to epilepsy care.
- Student shall not be penalized for absences required for medical appointments and/or for illness related to his/her epilepsy.
- DAILY INSTRUCTIONS AND COMMUNICATION
- Every substitute teacher and substitute school nurse shall be provided with written instructions regarding student seizure care and a list of all school nurses and staff involved in his/her care at the school.
- Student’s parents shall be informed each day of any seizures that occurred at school or at any school-related activity or event. The information given to the parents shall be in writing and shall include information about the type(s) of seizures that occurred, any first aid or other treatment provided, and any other relevant information.
- As stated in the attached Seizure Action Plan, in the event of an emergency such as a seizure that results in an unusual response, school staff shall contact 911 and notify student’s parents.
- EMERGENCY EVACUATION AND SHELTER-IN-PLACE
- In the event of an emergency evacuation or shelter-in-place situation, student’s Section 504 Plan shall remain in full force and effect.
- The school nurse or other person identified by school staff and named in this
Plan, shall provide seizure care as outlined in this Plan and will be responsible
for transporting student’s medication. He or she shall remain in contact
with student’s parents/guardians, and shall receive information,
guidance, and necessary orders from the parents regarding seizure care.
Visit Your Favorite School Nurse on Teachers Pay Teachers and check out the bundle of seizure forms including an activity log, EMS report sheet, Action plan, and suggested 504 accommodations.