by Danielle Dunn
Receiving an epilepsy diagnosis can rock the most resilient of families. Without too much of an introduction everything has changed and now seizures are a part of your life. How on earth does a parent cope?
Firstly, you are far from alone. The epileptic community is probably bigger than you thought with around 1 in every 200 children affected by epilepsy. You may already have a connection with someone who is living with epilepsy. Seizures are even more common than epilepsy and can happen to anyone with a brain. For example, if your glucose goes too low or you have a big knock to the head this can bring on a seizure whether you have epilepsy or not. Epilepsy is diagnosed when two or more unprovoked seizures occur on separate occasions. There are many different types of seizures and many different forms of epilepsy. No two epilepsy journeys are the same.
Top tips for keeping afloat when receiving an epilepsy diagnosis:
Seek SUPPORT
Epilepsy Clinical Nurse Specialist
If you are an in-patient at your hospital ask for a visit from the epilepsy clinical nurse specialist. As well as providing a lot of information and resources, they can be helpful for things like liasing with your paediatrician and neurologist and juggling appointments for EEGs and MRIs.
Epilepsy NZ - http://epilepsy.org.nz/
Contact your local Epilepsy NZ officer to pop around for a home and school/daycare visit to provide education and connect you with local support groups
Epilepsy Waikato Charitable Trust - https://ewct.org.nz/
Anybody in the country can check out their fantastic webpage and Facebook group and those in the Waikato can book in a home or school visit.
Facebook Groups
There seems to be a Facebook group for everything in this day and age, New Zealand has a few groups and there are more internationally, great for parent to parent understanding and support
Family and Friends
Accept all the meals you can get your hands on and consider asking trusted family or friends for help with other children and housework while you find your feet.
EDUCATE yourself
- Your entire health care team including your GP, pharmacist, paediatrician, dietitian and neurologist are a fountain of knowledge so make the most of them and get those questions off your chest!
- There are a tonne of resources out there. Try to stick to accredited epilepsy organisations like http://epilepsy.org.nz/faq, https://ewct.org.nz/about-epilepsy/, https://www.ilae.org/patient-care.
- Everyone's epilepsy journey is unique and no one can predict exactly what sort of path your child's journey will take you on
Learn to be your child's ADVOCATE
- The Starship epilepsy clinical guidelines are publicly available at: https://www.starship.org.nz/media/547624/epilepsy-guideline-2017-.pdf
- Although this is a bit of a hefty document, you can skim straight to the part that is most relevant for your situation and check out the flow diagrams to ensure you are receiving all the diagnostic procedures and referrals that are indicated.
- Leading up to your appointments, write down questions to ask your paediatrician or neurologist
- Take a support person you can trust to your appointments and to be present during doctors rounds if you are a hospital in-patient
- If you do not think you are being treated appropriately then first question your doctor. If this approach is unhelpful then seek assistance through your support network to navigate the complaints process through your DHB then Ministry of Health as the next steps.
Use TECHNOLOGY to your advantage
- Download an epilepsy app and start documenting seizures and any factors associated with them (eg illness, tiredness, upon waking ect)
- Take videos of seizures on your phone to show your neurologist to help them classify the type of seizures your child is having
- Consider using a baby monitor, bed seizure monitor or seizure monitor watch to help alert you to night time seizures
When you have a few tools in your belt to upskill yourself in tackling epilepsy then you are in a much better position to help support, encourage and guide your child as they learn how to live well with epilepsy.
Epilepsy is one of life's many reminders that despite our best efforts, everything is not in our control. Aiming to continually refine how we respond when under pressure so that the strength of our character gradually becomes greater than the weight of our circumstances is certainly a lifelong journey and shapes who we are.
Equipping yourself with a good support network is key to living your best life whether or not epilepsy is part of the mix. If your child has been diagnosed with epilepsy, you are now part of a huge global community of families who know what it is like and are all on different stages of their unique journey with epilepsy. Find the avenues for support that fit you best.
There is plenty of help and hope out there if your child has epilepsy.