Maria: Hi Marama, thank you for participating in my ‘phone chat’ project. I love the idea of people telling stories and I wish to thank you for telling me yours.
I understand that your little lad has quite complex epilepsy.
Marama: Indeed, he has. My son has quite a few medical, learning, and behavioural challenges as a result of him having drug-resistant, left-temporal epilepsy which has been caused by a gene mutation called KCNT1. This has led to him developing encephalopathy, which is severe brain disease.
It has been a really difficult journey as my son has trialled 10 anti-epileptic drugs (AEDs) and we are still trying to get good seizure control for him.
Maria: I understand the frustrations involved here as there is no one-fix magic pill and many people with epilepsy end up trying lots of different medications before they find the one (or more) that works. Unfortunately, at least 30% of all people living with epilepsy are seen to be drug-resistant. It is pure heart-ache.
Marama: My son is currently being weaned off Lamictal and is trialling Phenytoin. He is also trialling CBD along with Keppra. It is quite a cocktail of medications that he takes. He is also taking Rubifen and Ritalin for his ADHD.
Maria: Please tell me about these challenging behaviours.
Marama: My son has attention-deficit/hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), is on the autism spectrum (ASD), and has severe insomnia as a result of having clusters of nocturnal seizures. My son has seizures all through the night, usually on the hour every night, and he tries to stay awake from 3 or 4 am until school starts. Due to this he is sleep deprived and at more risk of seizures during the day.
Maria: It has been a tough six-year battle getting help for your son.
Marama: It is an ongoing battle navigating various agencies to find out what respite funding is available for our son and our whānau as a whole. We have also struggled every year with meeting the criteria for HHN funding (he usually gets approved but then it is declined if he doesn’t have enough daytime seizures to meet the HHN criteria) so our school is now applying for ORS for the first time. My son needs full time supervision for medication, toileting, playtime, swimming, science, and technology. He needs to be safe because of his seizures. It is a real worry.
Maria: Gosh! Navigating systems are truly frustrating and so slow. The high health needs (HHN) is formulaic as minutes are counted in a child’s life at school. Unfortunately, there is very little awareness of what epilepsy is and how seizures affect people generally. Epilepsy is more than a seizure. It is about how those seizures affect people and it can be lasting. It can affect mood, memory, sleep, personality. The list would go on.
How is the ORS funding application coming along?
Marama: The school is still in the process of writing that application. Once again it is going to take time. Meanwhile, my family is under pressure, as is the school, as our son’s behaviour is becoming more challenging. If his mental health declines further then he will be put onto risperidone.
Maria: Children with epilepsy (and their families) can carry huge burdens in life because of epilepsy.
Marama: I had to give up full time work during lockdown when we lost our previous caregiver. I hope to use the time I have off work to set up a better support network for our whānau so that we are better able to cope with the challenges of life and all that our son’s condition brings with us.
We know that things happen for a reason and there are lessons to be learned here for us.
Maria: Thank you for sharing your story Marama. I wish you well in the future as you find the support that your son needs for a good quality of life.
Definitions for:
ORS (Ongoing Resourcing Scheme): Helps a student join in and learn alongside other students at school. Once a student is in ORS, their funding stays with them throughout their time at school. Around 1 percent of students receive this support at any one time.
More information can be found on the education.govt.nz website.
HNN (High Needs Funding): Helps a student join in and learn alongside other students at school. Once a student is in ORS, their funding stays with them throughout their time at school. Around 1 percent of students receive this support at any one time.
More information can be found on the education.govt.nz website.