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Feature Article: Supporting children with seizures in the school, Shannon Brophy, RN, MSN, APN-BC

For this issue of the Northeast Regional Epilepsy Group newsletter, we feature an article based on a conversation we had with Shannon Brophy, RN, MSN, APN-BC, who many of you may have met in our New York and New Jersey offices and hospitals.  She sat down to discuss a very important topic: how to best support a student with seizures in a school setting.  

What sort of numbers are we looking at when we talk about seizures in schools?  How many school-aged children have seizures?

Well, more than 300,000 school-age children have epilepsy in the U.S. and most of those children attend school and can participate in activities.  They may take medication during the school day and may need certain accommodations for learning activities but most can certainly participate successfully in a school setting.  

How can seizures affect learning?

There can be cognitive effects of seizures and side effects from medications that could impact learning. Some of these include: missing information/instructions if seizures (even very brief ones) occur during class time.  Students may also face the difficult experience of forgetting newly learned information (e.g. studied for a test the afternoon before and had a seizure afterwards in the evening--that which was learned in the afternoon may be forgotten).  Students may also feel sedated and have trouble concentrating and this could be because of seizure effects and/or medication effects.  In fact, the risk of learning problems is estimated to be 3 times greater than the average.

What can you tell us about the impact of anti-epileptic medications and learning?

Well one obvious issue that can impact learning is whether the student is on monotherapy (just one medication) versus polytherapy (taking two or more anti-epileptic medications).  However, we know that all anti-epileptic medications have side effects including sedation (feeling like you are tired and lacking energy), lower mood, and some can have specific cognitive issues such as, word finding difficulties or problems with sustained attention.

How about if a seizure occurs in the school itself.  What advice do you have for parents and school staff?

The advice I give is similar to the advice I would give in the event of a seizure anywhere: 

1) Remain calm, 2) Protect the person who is having a seizure from injuring her/himself, 3) Assess breathing, 4) Note if the person who has suffered a seizure is still conscious, 5) Very important: Do NOT put anything in mouth and Do NOT restrain patient, 6) turn the person on his/her side to help keep the airway open, 7) Call 911 if breathing impaired, 8) make sure the person is comfortable and safe.

And specifically for schools, I recommend that the medical staff, parents and school work to develop a customized seizure action plan that includes: 1) What does seizure look like?, 2) Is there more than one type of seizure?, 3) wait 3-5 minutes before administering rescue medication, depending on the accorded response time, call 911 if this time limit has been met, 4) Review this plan every year and include the input from the medical staff, parents, student, and school RN, 5) keep a seizure observation log (this is a log of when seizures occur as well as other important details, such as duration, description, etc.).

Anything more specific you can tell us about the seizure action plan?

Typically, this plan would include the type of seizures the person typically experiences, duration, frequency, other descriptions, triggers or warning signs, and typical responses after the seizure has ended and the person is returning to baseline.

When is a seizure an emergency?

First off, if the person is experiencing a seizure for the first time, that is considered an emergency...  There are other things that might also be considered emergencies and that will require immediate medical attention: 1) a seizure lasting longer than 5 minutes, 2) seizures that are repeating (e.g. has a seizure, stops, has another seizure, etc.), if the seizure occurs in the presence of diabetes or a fever, if the person who has the seizure is pregnant, if the seizure occurs while in water, If the person is injured, or if the parents request an emergency evaluation.

Seizure emergency protocols in school usually include: Contact school RN, call 911, notify parent or emergency contact, administer emergency medications, and notify the student's doctor.

What specific recommendations do you have for school settings?

Usually, during field trips, sports, recess, we would recommend that the child not climb to extreme heights, swim only under close supervision, avoid over-exertion and extreme temperatures, and avoid any situations where loss of consciousness may endanger the child or others.  

As a parent, I would recommend that you should make sure that all the key adult staff that interact with the student are aware that the child has a seizure disorder and how to respond.  We would also recommend that parents start each school year with a meeting with the child's teacher/s, keep in touch with staff during school year, immediately update the school on any important changes, and basically, communicate, communicate and communicate. Some schools will also allow an epilepsy educator to come in and educate the children who are in the student's class about epilepsy. In that way, the children are much more knowledgeable about seizures and less likely to stigmatize their classmate.  However, not all parents and children with epilepsy want this approach; some prefer to have only a few key individuals in the school know about the child's diagnosis.  The decision is a personal one.

How about for those children who are diagnosed with psychogenic non-epileptic seizures (PNES), a psychological condition that can produce seizures and that can have a major impact too on school activities, social activities and learning?

We recommend that the parents make the school team aware of this diagnosis and clarify with them that this seizure disorder is not medically dangerous (although obviously it might be if the student injures her/himself during a seizure for example).  The school staff should be provided with a behavioral response plan that includes providing the student with a safe environment where she/he can go to reduce stress if it feels like a seizure is coming on, allow the student to return to normal activities as quickly as possible after experiencing an episode, and don't call 911 unless the episode is significantly different than prior episodes, if he/she is not breathing adequately or if the student has sustained an injury during the episode. Generally, we would also recommend that the staff help keep the child safe, do not hold or touch unless trying to prevent an injury and for the most part, just remain vigilant.  

For more complicated cases, both with epilepsy and PNES, it may be necessary to evaluate the child for an individualized education plan (IEP) or 504 education plan with the goal to develop educational accommodations.  In some cases, a 1:1 paraprofessional may be needed. But always, our final objective is to allow the child to have a learning experience that is as productive and rich as possible!  

Thank you so much for giving us this interview, Shannon.  You have really given us a lot of useful information that can help parents, students, teachers, school nurses, and more.  

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