Therapeutic Considerations of Antiseizure Medications-Rescue Medications and Seizure Action Plans Across the Lifespan

Video Transcription

Hi, I'm Nancy Auer. And I'm going to, thanks Michelle, I'm going to kind of switch a little bit of gears and talk a little bit about seizure action plans  and what you do if you have a prolonged seizure and how to handle that and some of the rescue medicines that go with it and some of the things you need to consider.  I don't have any disclosures. I will be talking about medications in a manner in which they're not FDA approved and also mention the brand names of these drugs,  the rescue medicines, because parents will come to you and say that specific name. Here's my learning objectives. It's basically what we had learned about before.  I'm going to try to kind of simplify and give you lots of resources for seizure action plans and rescue medicines that you can take back to practice.  So Rick, I'd like to play this video if we could.  Yeah!  Yeah!  Guys, give us some room. He's having a seizure. Get me some towels.  Okay.  Stay calm. It's going to be fine. Help me get him on his side.  Okay.  All right. Listen up, fellas. Before we practice, I want to go over a couple of things. First, I'd like to welcome back Michael.  Good to have you back. We all know Michael has epilepsy. And he shared his seizure with us in the game. He has something he wants to say. Yeah, thank you all for supporting me.  And thanks to Coach for knowing what to do. I'm sorry if my seizure scared you guys. It could be scary for me too. But what's even more scary is if people didn't know what to do.  So today, we are going to learn Seizure First Aid thanks to the Epilepsy Foundation. We're teammates. Right? We take care of one another. We count on one another.  And when anyone with epilepsy has a seizure in front of you,  they're your teammate. And they're counting on you.  So, first, stay with him. Okay? Stay calm. And keep others around you calm and out of the way. Protect him. Keep him safe. It's also important to remember  that the person having the seizure should be lying down and that there is nothing harmful in their way. Turn them on their side and support their head  so that they're not banging it and so they don't choke. Never put anything in their mouths. And do not hold them down. Time the seizure until the very end.  Knowing how long the seizure lasts is important information for the doctors to know. If the seizure lasts more than five minutes, call 911. When you see somebody having a seizure,  you're going to feel a little powerless. But if you protect them and if you stick with them by their side, you're doing the right thing. Okay? All right, let's practice this.  Bulldogs on three. One, two, three. Bulldogs!  So one of the reasons I showed you that video, it's one of the videos that I recommend from the Epilepsy Foundation for parents and particularly school nurses or teachers to watch.  It's easy to access. It's on YouTube. It's, you know, wherever you want to try to look it up online.  It gives us a starting point of like how to start, of how to take care of a child who has a seizure. So why do we even need to talk about this is that just as a reminder,  there's many people with active epilepsy and that is terms of people who are on medication and who possibly could have a seizure out in public doing their job or at school  or at a playground. Not only their home or a hospital setting. As you know, most seizures don't happen in the hospital. One percent of U.S. children have lifelong epilepsy.  That means they deal with this, you know, for their life. And three million adults, it's estimated, actually have epilepsy. They're actually working.  So we have that many people out in the workplace. So what if a seizure lasts longer than Michael's did in the video? So as we know, status is defined as five minutes or more  of generalized tonic-clonic activity, 10 minutes of a focal status with impaired awareness, or 10 to 15 minutes of absence status. Seizure clusters are defined currently  as an increased frequency from the patient's baseline of their seizures. However, a unified definition of seizure cluster does not exist. This is a subject of current collaboration  and a focus of the Epilepsy Foundation Rescue Therapy Project. So possibly something may come out of that.  So we're going to kind of go over in brief some of these to give you some take-home things to take back to your practice and also for your patients.  So seizure action plans, what simply are they? A mom told me, she goes, how come you guys don't call this the quality of life plan?  And I thought that was awesome because what it does, it allows seizure action plans, in a sense, give parents the empowerment or the teachers or the staff  taking care of the child or adult, the caregiver, with epilepsy. It allows them to participate in some of the normal things and gives them the power to hopefully stop the seizure  and gives them a framework to train others around them on how and when to respond. It's basically simply, if you see this, do this. This is what you do in case of an emergency.  And it's customizable to the patient. Surprisingly, 9% of adults admit that they have seizure action plan. That was a surprisingly low statistic that was reported.  And 28% of patients with cluster seizures have seizure action plans. Adults particularly reported that they were really concerned about not having seizure action plans  because of the uncertainty and living in fear that they would have a seizure, the impact on their daily life, their safety, and their social life, and particularly work.  So it depends on, so you may ask, well, do seizure action plans work just in and of themselves? Well, it depends exactly on what question you ask.  If you ask the caregiver, school, and parents, do they have confidence in managing their children's seizure with the introduction of a seizure action plan, the answer is yes.  One study found that parents whose children were given a seizure action plan at their neurology visit felt more confidence in their child's epilepsy diagnosis.  One study found patients who were more likely to return for their neurology follow-up visits. That study was actually done by Dr. Albert from Nationwide Children's.  Seizure action plans were also found to be more effective in patients with lower seizure frequency. So those not having 10 a day, maybe one to two a year.  So a study in Minnesota showed that it wasn't enough to have a seizure action plan, and it was rather the education and training in what to do in case of a seizure  and how to administer medications that mattered. And this is, I think, really important because there is, in the literature, you'll see many studies and also reports  in legislation now of this school training and education debate. There are several states now that have made it mandatory that school staff receive training in seizure education  and administration of the rescue medication. Florida was the latest state in August of this year. In my own state of Ohio, we have a bill going through.  I believe it passed the House of Representatives, but as of a week ago, it has not passed. But it will also mandate school education and training  for rescue medication and seizure care.  Seizure action plans do not reduce emergency room visits. There is going to be, and current, future efforts on focusing on changing healthcare utilization  and possibly decreasing emergency room visits. That is a focus in research that you'll see in some of the literature. Studies are currently being done  on how improved knowledge extrapolates to improved patient outcomes. And so that's where this is going.  So what is a seizure action plan? What does it include? So here, Penvich gave a very nice kind of overview of what a seizure action plan should contain in red.  You'll see some of the ones that are the most important points that they believe should be in a seizure action plan.  What's the goal? Well, it's like I said before. It's changing and improving the quality of life by hopefully decreasing the burden of seizures,  giving caregivers a sense of empowerment, and also allowing people with epilepsy to participate in normal activities that you and I may take for granted.  So this is our seizure action plan that was developed for EPIC, which is our EMR at Nationwide Children's Hospital. It's very easy to use,  and I'll give you resources of how to get this into your own EMR if you wish. It's very easy to go and click through here, and then at the end of the visit you can print it out.  And it goes through the many medications at the bottom. It was too big to put on here, but at the bottom it has all the rescue medications printed out,  and you can individualize this.  We wanted to improve the amount of patients in our clinic that received seizure action plans. And this is a very busy slide, but my point in putting it up here  is that this is a multi-year, multi-factorial process. And so seizure action plans, it's not just a piece of paper that you can hand out at a visit. Everyone has to be involved.  There has to be a team effort. There has to be a goal in trying to improve the education and training that goes with a seizure action plan for the rescue medicines.  So our pharmacist and nursing, the discharge, we had to put something in our EPIC as a BPA marker that said, hey, listen, did you, a reminder,  did you print a seizure action plan for this patient?  And then also just tried to kind of make sure that it printed with the after-visit summary. All these things kind of helped us prompt caregivers  to have the discussion about providing a seizure action plan for the patient, if it was appropriate.  So now I'm going to kind of switch and just kind of talk briefly about the rescue medicines that are used, and you can add into these seizure action plans for the seizures.  And here's the rescue medicines that are available.  So an ideal rescue medicine should be broad spectrum, have an immediate duration of action, right, because we want it to cease the seizure at the point of administration.  We want an ease of use. We want safety demonstrated. We want minimal discomfort. We want a broad spectrum for adult and pediatric use, and also have a long shelf life.  That's a lot to ask.  Our rescue medicines are diazepam. There's a rectal form known as Diastat. There's a nasal form known as Valtoco. Midazolam, there's nasal, nasalam,  and then there's intranasal midazolam, which I'll talk about that you can get through hospital pharmacies with just an aerosolizer. And there's clonazepam, which is oral.  This is used for cluster seizures and bridge dosing. It's usually not on a seizure action plan, I have put it on there before with clear directions,  but I'm not going to talk about this today because I want to stick to the ones that are more approved for our generalized seizures.  So rectal diazepam, it's one of the most widely used and studied medications. It was FDA approved in July of 1997 for cluster seizures, believe it or not.  It's approved for two years age of an older. Here's the dosing. It is dosed on weight. And I am going to mention at the end something about somnolence or return to baseline,  and that's just hopefully to drill in your heads that these medications are safe and they're okay to use and they don't decrease respiratory rates or cause respiratory depression  if given properly at the dose recommended. So this was the only side effect noted in the study.  Here's a nice chart that we made thanks to our pharmacy department at Nationwide Children's to help us kind of with the dosing.  So intranasal diazepam, which is Valtoco, was FDA approved recently in 2020 for patients six years age and older for the acute treatment of intermittent stereotypical episodes  of frequent seizure activity. So it's dosage-based, six to 11 years, is 0.3 milligrams per kilogram, and then on up with the max dose being 20. Most common side effects, again,  were nasal discomfort, headache, nosebleeds, and somnolence. But they returned to baseline a one hour after administration.  Here's the dosing chart for that.  So intranasal midazolam or nasolam, this was, nasolam was FDA approved in May of 2019 for patients age 12 and over for cluster seizures. The max dose is 10 milligrams.  It is approved for a second dose if the seizure continues for 10 minutes in the opposite nostril. They returned to a functional baseline quickly,  and this is increasingly used by EMS  because of the shorter half-life of two and a half hours, and it's on almost every EMS vehicle now.  The only side effects that they noticed were throat irritation, headache, and somnolence again. Intranasal midazolam is actually the cheapest form of a rescue medicine.  So this is something to know. If you have a patient who is paying for their medications,  this is most likely the rescue medication that you would want to choose.  Midazolam does have a buccal, and I believe Lily had that first as a rescue medicine. We did use that at one point, and there was a lot of, with children anyway,  there was a lot of saliva with the seizure, and it was unknown, you know, and parents were afraid what was in there and did they get the dose.  And even though it's supposed to be absorbed bucally very quickly, so it's not a popular, it can be used, you might see it, but it's not popular.  So this is for midazolam.  We use the inject, this is the one that comes in a syringe, it comes in a vial, and it comes with a Christmas tree adapter, an aerosolizer atomizer on the end of the syringe,  and this can only be dispensed throughout patient pharmacies, and this again is based on weight.  And then Nazolam is much simpler, and it's just, if you're 12.5 to 25 kilograms, you get five milligrams, or one spray in one nostril, if you're over that,  it's one spray in each nostril, or 10 milligrams.  Here's your cost comparison, which is why I said midazolam with the pre-filled syringes and atomizers are your cheapest way to go.  So to kind of wrap up, the education and enhancing communication, the seizure action plans hopefully help that with the rescue medicine being on the seizure action plan,  it also provides clear and concise communication with the necessary information. I want you to understand, and hopefully you've got that, that rescue medications are safe  and widely used with little side effect if properly dosed. Patients do return to baseline one to one and a half hours post-administration.  So we talked about this a little bit, but seizure action plans allow for participation in normal activities. I think this is their biggest benefit. The other thing is,  is that they need to be individualized. I had a grandmother who was taking care of a grandchild. She had very poor vision, and I gave her our seizure action plan,  which is a busy one piece of paper. And she said, I can't read this. You know, she handed it back. And I said, okay, you know, how can we help you?  I ended up writing on a, you know, piece of printer paper with a Sharpie marker, give this if seizure, you know, so that she could put it on her refrigerator.  That was the seizure action plan. So consider those, who is caring for this child, who is going, or adult, if it's a co-worker. Think about the big office spaces.  I always encourage people who are working, our children, adolescents who are working, they need to tell their boss, their co-workers.  Possibly having the rescue medications in a safe place. If you're working, hey, my rescue med is in this drawer.  You know, if I have a seizure, you know, will you please give it? Showing them that somewhere where it's safe and your co-worker knows where it is, is important.  Again, the hot topic in legislation now is the education of the caregivers, you know, for the administration of these rescue medications in schools in particular.  So thinking back again to our video, what would you do if you saw that seizure? What would you want to have available if the seizure lasted longer?  Do you have a rescue medicine in mind? Do you know what the patient's seizure action plan is and what you would do? These are all things that you might want to consider  when prescribing something.  So seizure action plan resources. If you have EPIC as an EMR at your institution, you can go to your EPIC specialist and in the community library in EPIC, okay,  they can load that same electronic seizure action plan in your chart for you, okay, so that it will come up in your visit. If you do not have EPIC and you have another EMR,  you can actually take that one that you have and get it put into your EMR, okay. So you can copy it. It's just a bunch of click boxes and have it put into your EMR.  The Epilepsy Foundation has one of the most widely used seizure action plans, you know, out there and this is their website for them. It's basically used for school,  but I have seen them and filled them out for workplaces as well. The Epilepsy Alliance of Ohio actually has a really good seizure action plan for work and that's on there.  The Child Neurology Foundation and the American Academy of Pediatrics also all have seizure action plans.  So resources. You saw one of the videos that I share with school nurses, but there's a lot of them out there. Some of these have trainings on how to give midazolam,  how to give diazepam. These are all good resources to have. The Epilepsy Foundation, again, the Rescue Medicine Epilepsy Alliance America is actually a really good resource.  They have little vignette videos for school nurses or caregivers that anybody can access on actually how to do them. The National Association of Epilepsy Centers  and the CDC actually has some really good resources, so I encourage you and I leave these websites out there for you to go and look.  Let your parents, your patients, your caregivers that you have, please give them these resources as well.

Video Summary

Nancy Auer discusses seizure action plans and the management of prolonged seizures, emphasizing the use of rescue medicines. She explains the importance of these plans in empowering caregivers and improving the quality of life for those with epilepsy. The discussion includes a video from the Epilepsy Foundation illustrating seizure first aid, reinforcing the message that staying calm, timing the seizure, and turning the person on their side are crucial steps. Auer outlines different rescue medications and their use, such as diazepam and midazolam, and stresses that these are safe when dosed properly. She highlights the necessity of individualized seizure action plans and the growing legislative requirement for school staff to receive training on seizure management. Auer provides resources and encourages healthcare professionals to ensure patients and caregivers are informed about and have access to seizure action plans and education.

Asset Subtitle

Presenter:
Nancy Auer, APRN, FNP-BC, is an experienced nurse practitioner who works at the Epilepsy Center at Nationwide Children’s Hospital. She has been a nurse practitioner for 23 years and has worked with pediatric epilepsy for 16 years. She has many years of experience working with children who have developmental disabilities, autism and other complex neurological problems. Her research focus is Autism and Epilepsy and she and her partners have a poster at AES that was selected for a special recognition session on this subject. She has been the receipient this year of the ACNN 's Excellence Award and 2 years ago for the Innovative Practice Award from ACNN. Her specialty involves teaching families and children about their condition and gaining their compliance with complex diagnoses. She has spoken on various topics pertaining to epilepsy and children for many years. She is an active Air Force wife and an Army mother, a grandmother, and loves spending her extra time with her family. An interesting hobby that she has is playing the flute, which she started in 5th grade.

Keywords

seizure action plans

rescue medicines

epilepsy management

seizure first aid

individualized plans

caregiver empowerment