Is Your Child's School 'Seizure Ready?'
An Epileptologist’s 4-Step Guide for Back-to-School Seizure Preparedness
Getting ready for a new school year means more than new school supplies and shoes for kids with epilepsy. For these kids and their caregivers, it also means making sure school staff are ready if a child has a seizure while at school.
Making a school “seizure ready” can entail a number of steps and it is important to get started on these as soon as possible. M. Scott Perry, M.D., medical director of Neurology and an epileptologist at Cook Children's, offers the following advice.
Step 1: Does your child have a seizure action plan?
One of the most important components of being prepared for the school year is having a plan in place should a seizure occur. A seizure action plan is a form provided by your medical team which describes the types of seizures a child has and what to do if one occurs. The plan covers the key components of seizure first aid, as well as for instructions on how and when to use rescue medications for the child’s seizures. A standard form is provided by the Epilepsy Foundation and is commonly used.
For future reference, I encourage parents to begin requesting updated Seizure Action Plans at least a month before the school year starts, as many clinics get thousands of requests before the start of school and completing them may take time.
Step 2: Is your child’s rescue medication appropriate for their current age and weight?
Rescue medications are commonly prescribed to patients with epilepsy and are most often used for seizures that are prolonged or occur in clusters. Each patient will have unique circumstances for which a rescue medication may be appropriate. Some patients may not have a rescue medication as part of their Seizure Action Plan – for example, if their seizures are rare, well-controlled, and typically very brief.
A variety of rescue medications are available. For prolonged seizures, particularly convulsive type, patients may use rectal diazepam or intranasal midazolam. These medications are favored because they can be absorbed quickly for rapid treatment of the seizure and they don’t require putting anything into the mouth of the person that is seizing. Rectal diazepam comes ready to use for the age/weight of the child. Currently, nasal midazolam will have to be measured out by school staff before administration, but a new ready-to-use formulation has been approved by the FDA and should be available soon.
For patients with clusters of brief seizures, rescue medications such as clonazepam can be given by mouth between seizures. Several other medications, such as diazepam, midazolam, and lorazepam, also come in oral formulations that might be swallowed or put between the gum and cheek of a patient for effect.
It is very important that parents and their providers make sure the rescue medication prescribed for the child is appropriate for their age and weight. As a child grows, the dosing of medications will change. For those patients that have rare seizures and rarely require rescue medications, it is possible that the dose prescribed years ago may no longer be appropriate and therefore, may be less likely to work if the dose is too low.
Step 3: Can your child’s school administer the rescue medications provided?
It is important to know what medications your school is able and willing to give. While rectal diazepam is commonly used in schools, there are some school districts in the U.S. that only allow the medication to be given by a school nurse or similar medical personnel, even though the drug was designed to be administered by laypeople. If your school does not have a full-time nurse, there may be times when the medication cannot be given and an alternative rescue plan may be needed. Likewise, some school districts will not administer nasal midazolam because this formulation of the drug is not FDA approved to be utilized in this manner, though in the medical profession, we’ve used it this way for many years. Talk to your school about the seizure action plan recommended by your medical team. If they are unable to give rescue medications suggested, talk to your team to see if there are alternatives or if training can be provided to the school to ensure the rescue plan is followed.
Step 4: Is your child’s school “seizure ready”?
Probably the most important step in making sure your child is safe at school is making sure the people caring for them during the day are prepared to recognize and treat seizures. Despite how common epilepsy is, many people are only familiar with one type of seizure – tonic clonic (previously referred to as “grand mal”).
It is important that teachers and staff understand what seizures look like for each child with epilepsy, so they can recognize when rescue treatments may be needed, but also to keep parents informed if seizures are occurring frequently and may require a visit to the doctor to discuss treatment changes.
Some seizures, such as absence and partial seizures, may only manifest as staring or decreased response. For these cases, it is important that staff are aware so they can recognize seizures and don’t confuse these behaviors with simply ignoring instructions or bad behavior. Finally, for some children, their first seizure may occur at school and it is important that staff be able to recognize seizures in those who may have no prior history.
There are a number of ways for school personnel to become educated about epilepsy. The Epilepsy Foundation provides many resources including online and in-person training of school nurses and staff on seizure recognition and first aid.
Click below for a couple of great tools:
The Epilepsy Foundation will also provide an ECHO course for school nurses starting October 2019. This is an online, interactive course for school nurses that includes instruction from epilepsy experts and allows for collaborative case presentations to discuss seizure recognition, first aid, and rescue treatments. Information for this course will be available on www.epilepsy.com in the near future. A helpful Seizure First Aid poster can be found by clicking here.
Finally, the Epilepsy Foundation will host a webinar from 7-8 p.m. CST on Wednesday, Sept. 25, 2019, on rescue therapies are open for anyone to attend.
Resources For Parents:
- Cook Chidren's Comprehensive Epilepsy Program
- Sam's Law
- Seizure Action Plan
- Seizure First Aid
- Seizure Training for School Personnel
- Managing Students with Epilepsy - School Personnell and School Nurse Training
Get to know M. Scott Perry, M.D.
Dr. Perry joined the Neurosciences Program of Cook Children's in 2009 as a pediatricepileptologist, then served as the Medical Director of the Epilepsy Monitoring Unit and Tuberous Sclerosis Complex clinic before assuming the role of Medical Director of Neurology in 2016. His clinical and research interests focus on the treatment of childhood onset epilepsy, specifically those patients with uncontrolled epilepsy or those for which the cause has not been determined. Click here to learn more about the Jane and John Justin Neurosciences Center.