The beginning of a new school year can be an exciting yet challenging time for both parents and students, especially when epilepsy is part of the equation. As parents and caregivers, ensuring a safe and supportive environment for students with epilepsy requires careful planning and open communication with educators and school staff. Here are 10 valuable tips for parents and students to navigate the back-to-school transition smoothly and make the upcoming academic year a successful one.

1. Open Communication is Key: When the school year starts, establish open lines of communication with teachers, school nurses, and administrative staff.
   • Inform them about your child’s epilepsy diagnosis, triggers, and any specific needs they might have.
   • Discuss seizure types, signs, and appropriate responses to ensure everyone is well-prepared.
   • Offer resources and training materials about epilepsy to teachers and staff. This can help them better understand the condition and how to respond effectively.
   • Inform the school immediately of any changes in your child’s health or medication regimen.
     
     
2. Create an Epilepsy Action Plan: By creating a well-documented epilepsy action plan, you empower school personnel to respond effectively in case of a seizure and provide your child with a safe and supportive learning environment. This plan is a critical tool in ensuring your child’s health and well-being at school.
   • Begin by working closely with your child’s healthcare provider, such as a neurologist or epileptologist, to create a personalized epilepsy action plan.
   • Describe your child’s specific seizure types, triggers, including any distinctive characteristics and how long they typically last.
   • List all current medications, including names, dosages, and administration schedules. Ensure this information is kept up-to-date.
   • Share emergency contact information, including your contact details, your child’s doctor’s information, and any other relevant contacts.
   • Provide step-by-step instructions on how to respond if your child experiences a seizure. This should include:
     • What to do if a seizure occurs during class or elsewhere on the school premises.
     • Whether or not to administer rescue medications, and if so, detailed instructions on how to do so.
     • When to call 911 or seek immediate medical assistance.
     • How to provide comfort and support during the postictal phase (the period after a seizure).
   • Ask your child’s school administration about a Plan of Care document under the Ontario government’s PPM 161 memorandum
     
     
3. Develop a Seizure Response Team: Identify key individuals who will be responsible for responding to seizures at school. This may include teachers, school nurses, and even fellow students who are aware of your child’s condition and how to offer assistance when needed. Encourage the school to designate a point of contact or liaison for matters related to your child’s epilepsy. This person can help coordinate efforts and ensure that all staff members are aware of your child’s condition.
   
   
4. Educate Teachers and Peers: Arrange an informative session with your child’s classmates and teachers about epilepsy. Demystifying the condition can reduce stigma and foster a more inclusive environment. Use this opportunity to clarify any misconceptions and answer questions.
   
   The training should cover various aspects, including understanding different types of seizures, knowing when to administer rescue medications (if applicable), and providing comfort and support during and after a seizure. Depending on the age and maturity of students, consider involving peers in the response team. Educate these students about epilepsy and how to offer support and understanding to their classmate during and after a seizure. Learn more about Epilepsy Durham Region’s comprehensive classroom and school staff presentations.
   
   
5. Promote Self-Advocacy: Teach your child about their epilepsy and how to advocate for themselves. Encourage them to communicate their needs to teachers and peers, while also knowing when and how to ask for help if they experience any symptoms or difficulties.
   
   Promoting self-advocacy empowers students with epilepsy to take an active role in managing their condition and communicating their needs effectively. Here’s a more detailed explanation of why this is important and how to encourage it:
   
   • Foster open communication between the student and their teachers. Encourage them to discuss their epilepsy, triggers, and any necessary accommodations.
   • Teach them how to express their needs and preferences in a respectful and assertive manner. This includes asking for extra time on assignments, requesting seating away from potential triggers, or explaining their medication schedule.
   • Ensure that the student knows the steps outlined in their epilepsy action plan. Teach them how to communicate these steps to teachers, school nurses, or peers in case of a seizure.
   • Stress the importance of seeking help promptly when needed.
     
     
6. Medication Management: If your child takes epilepsy medications, work with the school staff to ensure they’re administered correctly and on time. Provide clear instructions and any necessary medication, along with emergency contact information.
   
   
7. Prepare for Special Circumstances: Discuss strategies with the school for managing situations such as field trips, physical education classes, and extracurricular activities. Make sure your child’s needs are accommodated during these times as well.
   
   
8. Seizure-Proofing the Environment: Collaborate with the school to create a safe classroom environment. Discuss potential seizure triggers and ensure that any hazardous objects or obstacles are removed. If your child is photosensitive, consider addressing classroom lighting.
   
   
9. Encourage Emotional Support: The emotional well-being of a student with epilepsy is crucial. Offer them a safe space to express their feelings and concerns. Consider connecting them with support groups or counselling services if needed.
   • Provide educational resources about epilepsy for the student and their classmates. A better understanding of epilepsy can lead to more empathy and support from peers.
   • Emotional support is a critical component of a successful transition back to school for students with epilepsy. It helps them manage the psychological and social aspects of living with epilepsy.
     
     
10. Regular Check-ins: Throughout the school year, stay in touch with teachers and school staff to monitor your child’s progress and address any emerging issues. Regular communication ensures that everyone remains informed and can make necessary adjustments if required.
    • Plan and schedule regular meetings between the student, parents or guardians, teachers, and school staff. These meetings can be held monthly, quarterly, or as needed based on the student’s specific situation.
    • Collaborate with teachers to identify areas where additional support or accommodations may be needed.
    • Collaborate with the student to set academic and personal goals for the upcoming months. Encourage them to outline steps they can take to achieve these goals.
    • Keep detailed records of each check-in, including the topics discussed, decisions made, and action items. This documentation helps track progress and ensures accountability.
      

Navigating back to school with epilepsy requires collaboration, planning, and open communication between parents, students, and school staff. By following these tips and fostering a supportive environment, parents can help their children thrive academically and emotionally while managing their epilepsy. Remember, a well-prepared and educated community can make a significant difference in ensuring the success and well-being of students with epilepsy.

Epilepsy, a neurological disease characterized by recurring seizures, not only impacts the individual diagnosed but also has far-reaching effects on their entire family. From emotional challenges to lifestyle adjustments and financial burdens, the ripple effect of epilepsy extends beyond the person experiencing seizures. In this blog post, we delve into the profound impact epilepsy has on families, shedding light on the often overlooked aspects of this condition.

1. Emotional Roller Coaster:
   Epilepsy introduces an emotional roller coaster ride for both the person diagnosed and their family members. Seizures can strike at any time, leading to a range of emotions such as fear, worry, and anxiety. Witnessing a loved one experiencing a seizure can be a distressing and traumatic experience, leaving family members feeling helpless and concerned for their well-being. Managing these emotions and providing ongoing support becomes an integral part of their lives.

2. Constant Vigilance:
   Living with epilepsy requires constant vigilance, and family members often find themselves on high alert. The unpredictability of seizures means that loved ones must always be prepared to provide immediate assistance and ensure a safe environment. This heightened state of alertness can be mentally and emotionally draining, as they are always anticipating and adapting to the needs of their family member with epilepsy.

3. Lifestyle Adjustments:
   Epilepsy necessitates adjustments in everyday life for the entire family. Triggers that may provoke seizures, such as forgetting to take medication, stress, lack of sleep, flashing lights or certain foods, need to be avoided. Routines may need to be modified to accommodate medical appointments, medication schedules, and potential recovery periods. Additionally, creating a safe and supportive environment becomes paramount, which may involve making changes to the home or considering additional safety precautions. These adjustments require patience, understanding, and flexibility from everyone involved.

4. Financial Burden:
   The financial implications of epilepsy can be significant for families. Medical expenses, including travel to doctor visits and anti seizure medications, can quickly accumulate. Furthermore, specialized treatments, therapies, and assistive devices may be necessary, all of which can strain a family’s financial resources. Additionally, epilepsy may affect the ability of the person diagnosed to work, leading to a loss of income. Balancing the financial burden while ensuring the best possible care for their loved one with epilepsy becomes a juggling act that families must navigate.

5. Mental Health Impact:
   Epilepsy has a profound impact on the mental well-being of both the person diagnosed and their family members. Coping with the challenges of epilepsy, such as the fear of seizures, the stress of constant vigilance, and the uncertainty of the condition, can lead to increased levels of stress, anxiety, and depression. Family members may experience feelings of guilt or helplessness, and their own mental health can be compromised as they strive to provide unwavering support. It is essential to prioritize mental well-being and seek professional help when needed, fostering open communication within the family and creating a support network to navigate these challenges together.

Epilepsy is a disorder that reaches far beyond the individual affected, affecting the entire family unit. Understanding the profound impact epilepsy has on families is crucial in fostering empathy, support, and a more inclusive society. By acknowledging the emotional roller coaster, constant vigilance, lifestyle adjustments, financial burden, and mental health challenges faced by families, we can extend a helping hand and create a community that uplifts and supports each other.

If you or someone you know is living with epilepsy or supporting a loved one with epilepsy, remember that you are not alone. Reach out to us at Epilepsy Durham Region, we have a caregiver support group that may be of interest. There are also other epilepsy support groups, healthcare professionals, and online communities to connect with for guidance and resources. Together, we can raise awareness, advocate for affordable healthcare, and provide the understanding and support that families affected by epilepsy truly deserve.

Each year, Canadians recognize May as Mental Health Awareness Month. It is a time to educate ourselves about mental illnesses and the many impacts they can have on a person’s life. Epilepsy itself is not a mental illness, however studies show that individuals living with epilepsy have an increased incidence rate of many mental health illnesses including depression and anxiety.

• It is estimated that the prevalence of depression in association with epilepsy is as high as 55% ¹
• Studies suggest 33% of people with epilepsy recall having encountered enacted stigma/bullying while 90% admit to experiencing felt stigma ²
• Prevalence of suicide ideation among people with epilepsy ranges from 2.5 to more than 7 times that of the general population, with a rate of completed suicide of more than 30 times the global estimated rate ³
• Up to 25% of people with epilepsy live with a generalized anxiety disorder ¹

It can be difficult to understand whether mental health impacts on individuals with epilepsy are based on how epilepsy affects their life, or more directly how their brain is affected by seizures. While it can be hard not to focus on the ‘why’, we encourage individuals facing mental health challenges to focus on steps to help manage their symptoms. Here are some strategies that may be helpful for people with epilepsy facing mental illness and mental health challenges:

Reach out to your local Community Epilepsy Agency: Many local agencies offer programs and services directly related to mental health challenges and epilepsy including Cognitive Behavioural Therapy based programs and counselling. If your local agency is not currently providing the appropriate programming, they may be able to direct you to another epilepsy agency that is, or other mental health resources in your community. (Click here to find your local agency in Canada)

Never underestimate the power of a support group or peer-to-peer support: Living with epilepsy can be incredibly isolating; support groups offer a safe environment to share challenges, fears, triumphs and more.

Journal about more than just your seizure activity: It is important to track seizure frequency for many reasons, but it is also incredibly important to pay close attention to your day to day mood, behaviours, and quality of life. Share details about your mental health with both your general practitioner, as well as the specialist managing your epilepsy.

Know that you are not alone: Please connect with Epilepsy Durham Region if you have any additional questions.

Please note, if you are concerned about your mental health, please consult your doctor as soon as possible. If you or someone you love is in crisis, please connect with your local crisis centre (Durham Region: Durham Mental Health Services – Crisis Response | 1-800-742-1890).

1. Jackson, M J., and D Turkington. “DEPRESSION AND ANXIETY IN EPILEPSY.” Journal of Neurology, Neurosurgery & Psychiatry, 2005, https://doi.org/10.1136/jnnp.2004.060467.
2. “Epilepsy: A Public Health Imperative.” WHO International, 13 Jun. 2019, www.who.int/publications/i/item/epilepsy-a-public-health-imperative.
3. “The Black Dog in Your Waiting Room: Screening for Depression in People with Epilepsy.” EPIGRAPH, vol. 21, no. 4, 2019, https://www.ilae.org/journals/epigraph/epigraph-vol-21-issue-4-fall-2019/the-black-dog-in-your-waiting-room-screening-for-depression-in-people-with-epilepsy

At Epilepsy Durham Region, we value the feedback of all the individuals and families that connect with our organization for supports and services. We would like to hear how you think we are doing. Please complete the short survey below to help us learn how we can continue to improve.

As we wrap up national Volunteer Appreciation month, Epilepsy Durham Region has taken some time to reflect on what our volunteers mean to our effectiveness, the support we are able to provide, and ultimately the overall success of our organization. As a small staffed non-profit, Epilepsy Durham Region knows that we would not be where we are without the dedication, passion, and kindness of our volunteers. Simply put, volunteers are the backbone of Epilepsy Durham Region, helping it to thrive, have its heart shine through and its mission delivered, and we would like to take some time to highlight the commitment of a local family that personifies the goodwill, motivation, and philanthropy of volunteerism – the Douglas family.

Epilepsy Durham Region could not be more grateful for our connection to the Douglas family – Cris, Robyn, Ryan, Matt, and Kyle. Their generosity is equally matched by their upbeat energy, and innovation. No matter the initiative, event, or ask, members of the Douglas family are first in line to offer advice, skill sets, time, and a hand. They have played a pivotal role in Epilepsy Durham Region launching new, successful events, and offer a sounding board as we look to strengthen our organizational goals and direction. Most recently, their kindness has been felt in a huge way as we have adapted to recover from the pandemic and our transition away from our office space; with every turn they offer their support, space when we need it, and even the boxes to house our belongings.

The Douglas family motivation, drive, and commitment to community is unparalleled and the impact of their generosity is seen in the success of our programs, and the faces of the families with epilepsy that we help. Here is the amazing part – their volunteerism doesn’t stop with Epilepsy Durham Region. You can find a member of the Douglas family attached to so many amazing causes throughout Durham Region. Whether they are chairing a Board of Directors or committee, or riding their bikes for entire days at a time to raise much needed funds, they are always looking for new ways to be helpful.

It is hard for Epilepsy Durham Region to find words to portray how grateful we are to know the Douglases, but it is safe to say that we consider them family and feel forever indebted to the altruism that the Douglas family exemplifies.

It’s important to implement self-care activities into your daily life. When you have epilepsy, it becomes necessary to reduce stress and control anxiety. Just a few small changes can have a big impact. Overall, having a routine of a combination of these self-care tips for 2023 to live well with epilepsy is one of the best ways to maintain physical and mental well-being. It’s time to start a self-care routine where managing epilepsy is your priority – this will give you a purpose to stick with the plan.

Having a self-care routine is an essential piece of improving your mental health, but it is not a substitute for appropriate therapy and professional mental health support. So, if you are struggling with your mental health, please seek professional medical help. If you need support regarding epilepsy resources and don’t know where to start, please contact us at info@epilepsydurham.com.

1. Eat a healthy balanced diet and do not skip meals.

The most sustainable way to get better nutrition habits is to find enjoyable ways of eating that support your goals. Eat adequate amounts of protein and whole grains, fruits and vegetables. Start a meal planning and prepping guide to make sure that you don’t resort to last-minute fast-food options. You can create a basic grocery list of healthy foods you eat on a weekly basis, and simply rotate the ingredients to build your meals. Don’t forget to pack your lunch – this will help you eat healthily and save money while doing it.

Some people with epilepsy benefit from a ketogenic diet which has been proven useful, especially in children. Specific epilepsy diagnoses may even benefit more from this restrictive diet. Before beginning the Keto diet, it is important to contact your doctor as close monitoring is required.

2. Avoid and manage your seizure triggers.

Do not miss doses of your medications, get enough quality sleep, drink plenty of water, and avoid alcohol and recreational drugs. This isn’t all-inclusive, and each person should take their own triggers into consideration. If you need support with identifying your triggers, you can discuss this with your healthcare professional. If you need advice on how to manage your triggers, you can connect with us, it may be beneficial to join one of our support groups.

3. Get some exercise.

You don’t need another fitness trend that is unsustainable, it’s better to look for enjoyable ways to get moving. Getting outside and interacting with nature, such as going for a walk, is a very relaxing activity and offers many benefits to your body and mind. In many cases, physical activity may improve seizure control because it improves one’s overall health.

Most sports and activities are safe for those with epilepsy, however, remember that there are some precautions that people with epilepsy must take. For example, don’t go swimming alone or make sure that the exercise area is cushioned in case of a fall. Exercise is important for both your physical health and mental well-being so get moving and have fun while doing it.

4. Find a way to get involved or have something to focus on.

One of these things could be to volunteer with Epilepsy Durham Region. You could offer different ways to help raise awareness about epilepsy. Getting involved will help you build a community of support where you can talk with other people living with epilepsy about your struggles and get advice from them.

Epilepsy Durham Region has many different types of support groups that are accessible such as caregiver support groups, adult support groups, youth advocates, and more. You could also pick up a hobby, this would be something personal to you that you enjoy doing, it’s for your own relaxation and done during your leisure time.

5. Get organized.

If only it were that easy! It seems that organizational tools and gadgets are all around us, but so hard to implement and use, but there are some ideas you may not have thought of. One idea is to use a digital calendar that you can always access on your smartphone, you can even share them with family members so that you can coordinate your appointments. You can log your medications and set reminders to take them, with apps on your phone, to make sure that you never miss a dose. It’s also helpful to have a daily routine to help you stay organized so that you keep up with small to-do’s each day and you aren’t overwhelmed at the end of the week.

It is Halloween and we know that everyone loves putting on costumes and going out in their neighbourhoods trick-or-treating, receiving as much candy as possible!  Most people with epilepsy can go out and experience the joys of these traditions. However, there are some things that can be done to mitigate the risks associated with all the change and excitement. If trick-or-treating is in your plans, then be sure the child is with an adult or older child who knows what to do if they have a seizure. We’d like to share some other ways that you can make sure that everyone stays safe and healthy. Follow our 5 tips for staying safe this Halloween while still having a fun time.

1. Get Enough Sleep: Since sleep deprivation is a very common trigger for seizures, it’s important to make sure you aren’t staying out too late. Stick to your normal sleep schedule as much as possible, and don’t deter too much from your regular bedtime even when you’re having lots of fun.
   
   
2. Take your Medications: Another top trigger for causing a seizure is missing medication doses. Make sure that you continue to take your medication at the same scheduled time as prescribed by your doctor. It’s easy to lose track of time when you’re out having so much fun, so bring your medication with you and set an alarm so that you remember when it’s time to take your dose.
   
   
3. Avoid Other Triggers: In line with the top triggers like lack of sleep and missing medication doses, we would like to remind you to avoid any other known triggers for your seizures.  For example, some haunted houses or decorations may include flashing lights, so if you have photosensitive epilepsy, avoid going near these situations. Another example, that adults may encounter, is avoiding alcohol and drugs – another commonly known trigger. Reducing stress is also something to consider, for example, sticking to well-known areas can help reduce the unknowns that often create stressful conditions.
   
   
4. Wear or Bring Medical ID:  Medical identification can be worn as a medical bracelet to inform others around you during a seizure or medical incident that you have epilepsy so that they understand how to treat you in an emergency. Additionally, or if you don’t have a bracelet available, you can create a card that explains that you have epilepsy and explains other applicable information (such as your medication list and emergency contacts) so that people around you could use it in a medical situation.
   
   
5. Create a plan for the candy: Some children are on a ketogenic diet and eating candy can be physically bad for them. Some ideas that can be done at home are to make keto-friendly snacks before (or instead of) going out trick-or-treating.  If the child still wants to go out and collect candy around the neighbourhood, the caregivers can arrange a plan to switch the candy for games or gifts once the child returns home.

Do you have any cool costumes or purple pumpkin decorations that you’d like to share with us this year?  Send it over to us at info@epilepsydurham.com and we will enjoy seeing all your Halloween Spirit. Enjoy your time and stay safe!

October 19th Marks SUDEP Action Day

Each year, epilepsy organizations and foundations worldwide recognize SUDEP Action Day – a day devoted to raising awareness around the world about sudden unexpected death in epilepsy (SUDEP) and inspiring action to save lives.

On October 19^th, 2022, we invite you to join us in recognizing SUDEP Action day by raising awareness and having conversations about SUDEP and risk prevention measures. Education about SUDEP and prevention play a critical role in reducing the risk of SUDEP for people with Epilepsy.

For more information about SUDEP, please visit:

https://www.sudep.news/

https://sudep.org/

This October marks Epilepsy Durham Region’s 35^th anniversary. We would like to share a message from our Executive Director, Chelsea Kerstens, reflecting on how far we’ve come, and where we are going.

Charities and non-profits have such a growth curve, and at 35 years young, we are more aware of our strengths, and how much there still is to learn.  We are grateful for the people who have gotten us here, and to those who continue to offer their expertise and curiosity to our organization.

We invite you to join us in celebrating by donating $35.00 for 35 years!