Author Archives: Darryl

Safety Tips for Travelling with Epilepsy

July 25, 2022
Safety Tips for Travelling with Epilepsy this Summer

Summer has arrived, and for many of us, that means an upcoming flight, drive, or train ride for a well-deserved vacation. It is a time to relax and enjoy seeing old friends. Travelling with epilepsy can present several issues but it doesn’t have to prevent you from going away, you simply must be aware and prepared.  As you begin packing, remember these 5 key seizure safety tips for travelling with epilepsy this summer:

Medications

Medications-Safety Tips for Travelling with Epilepsy this Summer
  • Taking extra medication and prescriptions is essential when travelling. Expect the unexpected. For many reasons, you may be stuck in a country for longer than you expect and some countries around the world may not stock your medication.
  • Keep your medication in its original box/container and carry them in your carry-on luggage. Do not place it in checked baggage as you may need it onboard, or your luggage may be misplaced, lost, or stolen.
  • If you’re travelling with someone else, you may consider giving them some to carry for you as well. Make sure they know where you keep your medications in case you need help.
  • Ask your doctor for a duplicate prescription to have on hand, or in a worst-case scenario, they could always call in a prescription for you – make sure you bring their contact information just in case.
  • Make sure to continue to take your medications as you normally do which can be tricky with different time zones and being out of your normal routine. Set alarm reminders on your phone to help you stay on track.

Safety

Memories-Safety Tips for Travelling with Epilepsy this Summer
  • Travel with someone else or a group, if possible. If you are travelling with other people, you can ask them to support you in staying safe. If you are travelling alone, keep others updated on your travel status and location so someone always knows where you are.
  • Wear a medical ID bracelet in case you are unable to communicate, it’s an important and effective way to let medical professionals know about your condition.
  • Be extra aware of your triggers when you’re going on holiday and try to avoid them as best as you can. Disrupted sleep, travel stress, heat, missing meals, and drinking alcohol are more likely if you are going away.
  • Stay safe. If you wouldn’t normally swim alone, cycle, have late nights or drink alcohol, avoid doing these things while you are away.
  • Always have your phone and charger with you in case of emergency.

Research & Planning

  • Research hospitals and doctors in and around your destination so you are prepared in the event of a seizure which requires medical assistance. A simple internet search will help with finding appropriate facilities. Enter the phone numbers of hospitals and doctors into your contact list before leaving. In the heat of the moment, finding phone numbers is nerve-wracking and time-consuming.
  • Plan everything ahead to try to alleviate added stress. Pack for your trip a few days ahead of time so you get a good night’s sleep before you leave. Allow for extra travel time so you are not rushed.
Travel Insurance and passport
  • Use apps to make travel easier. Smartphones make it easy to do just about anything you need. You can book hotel rooms, cars, and order food if you don’t want to venture out.

Insurance

  • Travel insurance is not compulsory, but you don’t want to get caught needing medical assistance without it. You may find it more expensive if you have existing medical conditions, but the consequences can be disastrous without it.
Flying with epilepsy

Flying

  • If you have a vagus nerve stimulation (VNS) device, they have been known to trigger airport security alarms when you pass through the metal detector. It’s not a cause for concern and it’s something that the airport staff will be aware of. We would simply recommend you make it known to the scanner beforehand as they may choose to scan you with a handheld device instead.
  • If you have frequent seizures or you’re travelling alone, let a flight attendant and your seatmates know about your epilepsy and what they can do if you have a seizure.
  • If you’re flying or travelling on a train, request an aisle seat to give you a bit more space and make it easier for others to assist you if you happen to have a seizure.

We hope you enjoyed these safety tips for travelling with epilepsy this summer. Remember to relax and enjoy your adventure!

Life Impacts of Epilepsy – A Youth-Led Panel

June 28, 2022

Please join us for a virtual panel on Tuesday, July 12th at 6:30 pm to hear of the first-hand impacts of epilepsy. We are excited to have guest speakers Ava, Carter, and Dilara share their epilepsy stories, as individuals living with epilepsy as well as a sibling perspective.

Please register for the youth-led panel by emailing info@epilepsydurham.com – a meeting invitation will be shared with you prior to the event.

Additionally, if you have any questions you wish to ask our quest speakers, you may ask them to the host through the meeting chat feature, or you may send your questions in advance of the event and they will be asked during the question period.

We look forward to you joining us for this exciting event.

Blog: A Father’s Story – My Daughter has Epilepsy

June 28, 2022

My daughter has epilepsy – she started having seizures in her early teens. When the seizures first began, it was initially quite frightening in that we didn’t know what was happening to her; prior to this, she was as healthy as you’d expect a child to be.  Another challenge with the first few seizures is that they often happened while she was at school, we didn’t see them, and given a history of cardiac issues and the description of the events, we thought that these ‘episodes’ may have been fainting spells. When we eventually were able to see the episodes ourselves, and saw her present in different ways….rigid limbs when in seizure or even full tonic-clonic seizures.

We weren’t the only ones who were unsure of what was happening to our daughter. Doctors were also originally unsure as the events never occurred in front them, and many tests results came back normal. We were stuck in a cycle of ending up in the hospital emergency department with the episode over, and the attending doctor not knowing what it was – and we heard everything from the episodes being attributed to a simple faint, or even attention-grabbing tactics. It was only after a doctor witnessed my daughter suffering a prolonged episode that was still taking place when she arrived at the hospital that we found out she was having seizures and eventually received a diagnosis of epilepsy. It took our family four very long years to get to the point of diagnosis and treatment. This was all really hard on myself as a dad and on our entire family.  Initially, we felt people didn’t believe us.  I loved my daughter and wanted these episodes to just go away.  

With the extra attention to her issues, we also had to be mindful of how this might impact our two other children; we didn’t want a perception that the extra attention to my daughter made them feel like they were pushed aside.Looking back years later, we know that epilepsy had unique impacts to all three of our children, but we grew stronger together as a family and am proud of how we all found a way to manage epilepsy.

Helping the school system to understand things was also something we placed a strong emphasis on as it felt as though they didn’t know how to really deal with the unpredictability of the seizures.  We even experienced an incident with a teacher who outwardly shared that he preferred that my daughter was not in his class. As with anything, education is empowerment, and with the right information on what epilepsy is, how it presents and how to deal with seizures, we were able to ensure academic success for our daughter. Social stigmas and discrimination amongst her peers were an entirely different challenge, but I am so proud of how my daughter handled herself and refused to be labeled by her condition. 

When seizures became a regular occurrence, we had to adjust every day life. We made the decision as a family for our daughter to change schools to be closer to home.  We had to put measures into place that are not normally needed for a teenager to ensure she was safe in her own home (additional safety measures by the pool, no baths – only showers, no locking doors, no driving, etc.). It took a while, but eventually we adapted and our life as a family changed to a slightly different normal.  

As a working Dad, I wasn’t always immediately available when a seizure occurred.  Did I feel a bit guilty, yes, but between my wife and I, we were never that far away when a seizure took place. Despite having multiple seizures a week, our daughter lived as “normal” of a teenage life as she could, playing competitive sports, graduating on the honour role, and even moving away for university (which was one of the hardest things for us, but we trusted her and the great friends she lived with away from home).

My daughter didn’t want to have epilepsy but she does. We deal with it.  She’s an adult now, has an honours university degree, is thriving in her career, drives everyday and is now a parent!  I’m a proud father (and Gramps)!

Having gone through all this over the years, I wish people had known more about epilepsy, particularly the school system and the medical establishment; I’ll also include myself in that group. We had to learn so much so quickly about seizures and epilepsy because it was happening to us real time. We had to act fast to find ways to advocate for and support our daughter, while also understanding the best ways to support our other children and our family dynamic. Even had we not gone through this as a family, I strongly feel it would have been good to have a better understanding of epilepsy so we could react appropriately if someone else was having a seizure.

Epilepsy changed so many things for us. We have been through a lot as a family but feel very lucky that we found our way, our daughter is doing well, and that all of the challenges we faced have made us stronger together.

5 Things to Know About Pregnancy and Epilepsy

May 30, 2022

I wanted to learn everything I could about pregnancy and epilepsy. Pregnancy and fertility in women with epilepsy was often on my mind after being diagnosed with epilepsy at eighteen. I wondered if birth control would affect my medication. It concerned me that my medication would affect birth control. I wondered what would happen if I got pregnant before I was ready. There was a worry that my baby would have epilepsy. I had a fear that my baby would have birth defects. I wanted to know what I could do to prepare for having a baby 15 years before it actually happened. Not everyone is a planner or a worrier like that. But it is important to plan. And it’s important to know the risks and benefits of your choices.  I wrote this blog to help others like me find a good starting point for information about pregnancy and epilepsy.

Here are five things to know about pregnancy and epilepsy that will help in preparing for the next step of planning pregnancy as a person with epilepsy.

1. Women with epilepsy can have children – but plan ahead 

Prepare by learning everything about your health and medications. Get doctors on board with the plan so they know you’re trying to get pregnant. Gather questions and have a conversation with a neurologist or epileptologist and don’t hold back.  If there are questions about what to ask, then do some research online or reach out to a local epilepsy agency like Epilepsy Durham Region. It’s a good idea to think about these complex issues prior to getting pregnant. 

A mother needs to make sure her health is in check before she starts trying for a baby. If she is having seizures daily, now is not the best time to start a family. It is important to get her health under control first.  Of course, everyone involved wants to ensure that the baby is healthy and so the mother should also be in good general health. It’s important to maintain a balanced diet and nutrition. Getting exercise and the appropriate amount of sleep will keep the mother physically fit and it may help her manage stress too (bonus!).  

Review medications and vitamins or supplements with the doctors.

Discuss the dosage and quantity of medications used to control seizures. In addition to anti-seizure medication, it is important to take vitamins with a folic acid supplement prior to and throughout pregnancy, to reduce the risk of certain kinds of birth defects (Harden, 2009). Since many of these problems occur very early in pregnancy (sometimes before you recognize you are pregnant) it is wise to start the supplement before becoming pregnant (Harden, 2009). It’s an option to ask your physician for a referral to a genetics specialist who can help assess the risks to the baby from epilepsy, seizure medication, and other inherited traits that may be present.  

2. Anti-Seizure Medication – Weigh the Pros and Cons  

There can be risks to the baby and mother from having uncontrolled seizures. Seizures can result in falls, or cause oxygen deficiency for the baby and can increase the risk of miscarriage or stillbirths (Chillemi & Vazquez, 2009). Therefore, it’s important to make sure the woman is on the right medication that is suitable for her during pregnancy. Some Anti-Seizure Medication (ASM) may affect the child, and there is some chance of birth defects (Harden, 2009). Multiple seizure drugs at higher doses are statistically related to an increased risk for some types of birth defects.  

Most women with epilepsy should continue taking anti-seizure medication, and whenever possible, take a single anticonvulsant at the lowest dose that provides seizure control. Staying on medications poses less risk to their own health and the health of their babies than discontinuing medication and the subsequent risk of having uncontrolled seizures (Harden, 2009).   

It is very important to discuss with the doctors (neurologist, epileptologist, OB/GYN) and consider the pros and cons before making any changes or stopping any medication. Cover any potential problems now to make reasonable decisions about this important life event.  If you are going to change medications, always do this in close care of a doctor as there could be a danger to the woman and the developing baby if there are uncontrolled seizures during pregnancy.   

Remember that your chances of a normal, healthy child are excellent – greater than 90% (Crawford, 1997). 

3. Managing Mothers’ health during pregnancy 

If it was common to only see your neurologist or epileptologist every 1-year, then the epilepsy care will change slightly during pregnancy. “In addition to your regular OB appointments, your epilepsy specialist will see you at least once during each trimester of your pregnancy. You may also need to have bloodwork done monthly to monitor levels of your anti-seizure medications, as these can fluctuate throughout pregnancy.” (Harden, 2009). 

Maternal mental health month is May, and it’s important to know that women with epilepsy are at a higher risk of experiencing anxiety and depression before, during, and after pregnancy compared to women without epilepsy (Bjørk et. al., 2015). Continue to monitor for any mental health issues and talk to a doctor about it often if there are any concerns. 

The frequency of your seizures can change during pregnancy.

Here are some ideas from The Epilepsy Foundation on how you can decrease your risk of seizures while pregnant:  
  • Taking your medication as prescribed is the most important factor in reducing the chances of having a seizure.
  • Medicine levels may be changing. You will need blood tests of your seizure medicine done more frequently.  
  • If medicine doses increased during pregnancy, they may rise too high after delivery. Make sure you know the symptoms of high drug levels and what to do if you don’t feel well.  
  • Keep regular appointments with your epilepsy team.  
  • Try to sleep when the baby sleeps, although this can be difficult if you have other small children. When you first bring the baby home, ask family and friends to help so you can get enough rest. 
  • Use babysitters, even if you’re home. Have someone take care of the baby to give you time to rest or get other things done.  

4. Breastfeeding your child – benefits outweigh the potential risks 

Some new moms with epilepsy worry that they will be unable to breastfeed due to their medications. However, since the baby has been exposed to these same drugs throughout the duration of the pregnancy, it should be safe to breastfeed without having to worry (Meador et al, 2014). Most women who take anti-seizure medications can breastfeed. In fact, the benefits of breastfeeding often outweigh the limited risks associated with medication exposure through breast milk (Veiby et. al., 2015).  

Many doctors recommend taking anti-seizure medications after feeding the baby to minimize the amount of medication that passes through the breastmilk (Veiby et. al., 2015). Talk to the doctors about whether specific medications are safe for breastfeeding. 

Breastfeeding is good for babies and good for the mother, but it may create more demands on the mother with epilepsy, especially at night with the loss of sleep.

Here are some tips to help with night feeding: 
  • Whenever possible, encourage your spouse or partner to do the night feedings so you can get uninterrupted sleep.  
  • If you breastfeed, try pumping breastmilk into bottles so your spouse can use these at night. Or try supplementing breastfeeding with formula.  
  • Keep the baby’s crib next to your bed at night and feed him or her in bed with you. Whenever you are feeding your child, sit or lie down. This is a perfect time to put your feet up and relax.  
  • If you’re bringing your baby into bed with you, always check out the “Safe Sleep Seven Guidelines” to make sure you’re bedsharing safely. 

5. Bringing home baby – keeping baby safe 

Parents with epilepsy (this applies to women and men) need to take extra caution when caring for children. That means making care decisions like not bathing your child alone, changing your baby’s diaper on the floor instead of a raised surface, and using a stroller with automatic wheel locks. 

Here are some tips from The Epilepsy Foundation considering the precautions to take as a caregiver with epilepsy when caring for a baby: 
  • When bathing a baby alone, it is preferable to wash the baby on a mat in the crib, with a bowl of water outside the crib. If you are alone, do not put the child in an adult or baby bath. 
  • A well-padded easy chair is a safe, comfortable place to breast- or bottle-feed a baby. If you’re in a rocking chair, pad the arms with towels and use extra pillows to cushion the child. The mother can also lie on her side to feed the baby. 
  • Ensure there is a portable crib or playpen on each level of the home. 
  • Safely lock away medications, out of a young child’s reach. When the child can understand, explain why you take the medication and tell him/her about any seizure you may have. Children can learn to help you and help care for younger siblings during a seizure. 
  • Secure an outside play area with a sturdy fence and a locked gate. If taking a young child for a walk in a stroller, attach a safety harness to the child. Discreetly affix a tag or sticker on the stroller with the baby’s name and the name of a relative or emergency caregiver to contact in the event of a seizure. If taking a toddler for a walk without a stroller, continue to use a wrist harness until the child is old enough to fully understand that she or he must stay close to you if you have a seizure. 

Any woman who is pregnant and taking AEDs is strongly encouraged to enroll in the North American Antiepileptic Drug (AED) Pregnancy Registry. This is a research project that is collecting data to help determine the effects of AEDs used during pregnancy. Women who enroll will be asked to provide information about the health of themselves and their baby in three short phone interviews. You can enroll by calling 1-888-233-2334. To learn more, go to www.aedpregnancyregistry.org  

Written by Marla Turner 

References 

Bjørk, M.H., et. al. (2015). Depression and anxiety in women with epilepsy during pregnancy and after delivery: a prospective population-based cohort study on frequency, risk factors, medication, and prognosis. Epilepsia. 2015 Jan;56(1):28-39. 

Chillemi, S., Vazquez, B. (2009). Epilepsy and Pregnancy: What Every Woman with Epilepsy Should Know. 

Crawford P., (1997) Epilepsy and pregnancy: good management reduces the risks. Prof Care Mother Child. 7(1):17-8.  

Harden, C., et. al., (2009). “Management issues for women with epilepsy—Focus on pregnancy (an evidence-based review): Teratogenesis and perinatal outcomes.” American Association of Neurology 

Meador et. al., (2013). “Fetal Antiepileptic Drug Exposure and Cognitive Outcomes at Age 6 years (NEAD study): A Prospective Observational Study.”  

Veiby G, Bjørk M, Engelsen BA, Gilhus NE. (2015). Epilepsy and recommendations for breastfeeding. Seizure. 2015 May; 28:57-65. 

Volunteer Spotlight: An Exclusive Q&A with EDR Youth Ambassador

April 29, 2022

Volunteers are an essential part of our organization. Did you know that Epilepsy Durham Region’s roots lie in volunteering? More than 30 years ago, this organization began as a group of parent volunteers providing support for families impacted by epilepsy in our community. While Epilepsy Durham Region has grown so much, now manned by full-time staff members, volunteers still play a critical role in the success of our programs and services, with a volunteer Board of Directors, and roughly 30 volunteers providing more than 1800 hours of volunteer time each year.

Canada’s National Volunteer Week is April 24th – 30th, 2022. Here are some interesting highlights from Statistics Canada (Sinha, 2015) that show some Volunteering Facts in our country:

  • In 2013, 44% of Canadians aged 15 years and older volunteered for a charitable or non-profit organization.
  • The rate of volunteering was highest among teens aged 15 to 19, at 66%. This was followed by Canadians aged 35 to 44 (48%). Rates subsequently decline with age, with the lowest rates recorded among Canadians aged 75 years and older (27%).
  • A lack of time was the leading barrier to volunteering, reported by two-thirds of Canadians who did not volunteer in the previous 12 months. An inability to make a long-term commitment was also reported by 62% of non- volunteers.
  • Most volunteers stated that volunteering gave them a chance to acquire or improve their skills. Ranking the highest was interpersonal skills (63%), followed by communication skills (43%) and organizational and managerial skills (40%).

We are grateful for our volunteers who put in countless hours of support. Volunteering builds communities where people live happier, healthier, and more compassionate lives: by putting empathy into action, we create a stronger, more connected Durham Region.  Cousineau & Misener (2019) studied volunteers who experienced meaning in their volunteer engagement by perceiving they were making a difference on both an individual and a community level. EDR offers ways to link with our community and develop lifelong relationships.

This month, we are pleased to share some insights and experiences from Epilepsy Durham Region volunteer and Youth Ambassador, 21-year-old Teegan Latour.  We value Teegan’s dedication to Epilepsy Durham Region over the last 7 years.  Teegan is a strong leader, and passionate advocate, and remains for EDR one of our biggest supporters. Teegan inspires others to not give up. 

Please read below for an exclusive interview with Teegan.

1. What is your connection to epilepsy?

Answer: I started with a phone call for support and information and became involved as a volunteer shortly after that. 

2. When were you diagnosed with epilepsy? What was that like?

Answer: I was born having a seizure and was officially diagnosed with Epilepsy at two years old. Because I was so young, I don’t remember what it was like. 

3. What impact has epilepsy had on you?

Answer: It impacts my daily living because I must remember to take medication three times a day and be careful at events with different kinds of lights. I also make sure I get enough sleep. 

4. What societal stereotypes about epilepsy do you want to disrupt?

Answer: I want people to know that there is more than one kind of seizure and not everyone with epilepsy shakes and sometimes you don’t know someone is having a seizure. I also want people to know that I can do all the same things they can and having epilepsy doesn’t stop me.   

5. What do you do to keep yourself healthy?  

Answer: I eat healthily and try to get exercise and sleep. 

6. Why do you volunteer for Epilepsy Durham Region?

Answer: I volunteer to help others that struggle with the same or similar issues as I do and to support people and families affected by epilepsy. 

7. What is your greatest volunteer accomplishment?

Answer: My greatest accomplishment was the year I dedicated my art skills to making projects to fundraise for EDR. I made bracelets and painted, and all my projects were sold at events and raised over $8000 for the year. 

8. What is your favourite volunteer moment?  

Answer: My favourite moment was the Masquerade Ball when I got to speak, sell artwork, and meet Ken Shaw!

9. Are there still new ways that you would like to volunteer?  

Answer: Yes, I want to continue going to events, speaking, and selling my artwork. 

10. What do you think are some barriers that prevent people with epilepsy from volunteering and what advice would you give them?  

Answer: The stigma of epilepsy stops people from volunteering, and I would say to not be afraid to get out there and spread the word about this fantastic supportive community that is an extended family. 

[Photo credit: Nathan Lemon on Unsplash]

Request for more volunteers!

Volunteering allows you to give back to Durham Region, develop new skills, and meet people with similar interests. As more in-person events are organized, we look to expand our volunteer group. Please contact us with questions about how to get involved. You can also check out our volunteering page and submit your application form.

When you volunteer with Epilepsy Durham Region, you will support:

Special Events: This includes Purple Day, Bingo, the annual Epic Golf Tournament, and more. This allows you to gain experience organizing and running events. Some duties include: event planning and management, sign-in and sign-out supervision, attending to activity booths, and engaging with attendees.

Children’s Programs: Engage children in epilepsy education and awareness. Volunteering with children’s programs allows you to gain experience working with children and developing child-friendly content.

Classroom: Join us to develop and present content for Ontario classrooms, either virtually or in-person. Classroom volunteering presents a unique opportunity to work with children and youth, connect with schools in our community, refine and develop presentation skills and competencies, and develop content for students K-12.

Admin Support: Help us engage with clients and maintain our daily business practices. Duties include helping with email responses, telephone operations, and bookkeeping. This is a fantastic opportunity to gain experience in business administration and processes.

Finally, we wish to extend a heartfelt THANK YOU to all our valued volunteers who have given their time to raise awareness for Epilepsy Durham Region and to support those in our community who continue to live with epilepsy.

References:

Cousineau, L., Misener, K. (2019) Volunteering as Meaning-Making in the Transition to Retirement, Anserj, Vol. 10, No. 1, pp. 61-77

Erik L. Lachance (2021) COVID-19 and its Impact on Volunteering: Moving Towards Virtual Volunteering, Leisure Sciences, 43:1-2, 104-110, DOI: 10.1080/01490400.2020.1773990

Sinha, M., (2015) Volunteering in Canada, 2004 to 2013, Statistics Canada, https://books.scholarsportal.info/uri/ebooks/ ebooks0/gibson_cppc/2015-09-25/1/11082071

Epilepsy Durham Region’s Board of Directors Seeking New Members

April 13, 2022
Epilepsy Durham Region's Board of Directors is seeking new members

JOIN OUR BOARD OF DIRECTORS

BOARD MEMBER COMMITMENT

Epilepsy Durham Region is an innovative, progressive non-profit organization dedicated to fostering a safe and healthy community by enhancing and supporting the well-being of adults, children, youth, and families affected by epilepsy.

We are inviting individuals to join our volunteer Board of Directors team to help us:

  • Build community engagement
  • Increase the impact of our program and support services
  • Grow our thriving organization to meet the diverse needs of our client base
  • Regularly attend monthly board meetings and related meetings
  • Actively participate on subcommittees of the board
  • Maintain an understanding of organization operations and financial statements

We are looking for leadership representation in the following fields:

  • Legal Services
  • Mental Health
  • Human Resources
  • Digital Engagement
  • Marketing
  • Accounting

HOW TO APPLY

Please submit a letter of intent and resume to Chelsea Kerstens, Executive Director info@epilepsydurham.com