1. Tell me about Layla and her experiences
At first, we noticed that something was wrong when Layla kept doing abdominal crunching movements. We took her to the hospital, and she had a clear EEG, so we went home. A few weeks later she was having seizures multiple times a day. We took her to Starship after we weren’t happy with doctors telling us she was fine, and we were given the diagnosis. She’s now 12 months old, she has more seizure types and because her epilepsy is drug-resistant, she’s still battling spasms, a catastrophic type of epilepsy. We’ve searched hard for an underlying because, but tests haven’t returned anything significant. Layla possibly has focal cortical dysplasia, but we won’t know more until she’s two when the tests can be repeated.
2. What has been the scariest moment so far?
The scariest moment was watching her have a seizure for so long that emergency medicine had to give in the hospital. She started to choke on the medicine, and she couldn’t breathe. The seizure stopped and she recovered after a little suction. It was terrifying.
3. How have you found her treatment?
The treatment process has been long especially with the side effects she’s had to deal with. Although her epilepsy is ‘drug-resistant’ the medicine does have a positive impact. We were hoping for surgery but for now, we are still trying to find a combination that will work! It’s never-ending.
4. How has it been when nurses have been skyping you or coming to your house?
It’s been pretty easy communicating with the team that look after her. We’ve had a couple of zoom calls, phone calls and monthly visits with the nurse. It’s easy to share our concerns.
5. What has been the best part of the care you have received?
There are so many positives about the care Layla has received. I think the highlight for us is how amazing and informative the neurologist has been through this journey. She’s always positive and willing to try new treatment options. She never gives up and that really helps with our mindset as parents.
6. What has been the worst part of the journey?
The worst part is seeing Layla have seizures and knowing there’s nothing we can do to help. It’s also hard because she can’t tell us how she feels.
7. Do you feel as though you are wanting more care?
The level of care has been good. It’s easy to feel like more could be done when your child has a condition like this that’s getting worse, but patience is key. If we have any serious concerns, we know we can contact the neurologist.
8. Tell us a bit about her progress?
Layla has physiotherapy once a month, conductive education classes twice a week and speech and language therapy. She does have delayed development, but she’s working on improving her gross and fine motor skills. She’s not mobile but she has good head control and can sit with support, she loves to babble, she’s learning to play with toys, and she loves to laugh and smile. She’s getting some orthotics to help her stand, which is exciting.
9. What are some of the highlights that Layla has had along the way?
Highlights in Layla’s eyes would be learning to blow raspberries (her favourite), stroking her cat, learning how to eat food and give mum and dad kisses!
11. What are some of the processes you must do moving forward?
We are planning on Layla having another surgical review when she’s two, but we are trying to focus on her development this year. We are looking at different treatment options currently for Infantile Spasms.
12. What has been the glue that held you together?
Layla holds us together. We keep going for her and we just want to do our best to make sure she’s happy.
13. What is your favourite thing about Layla?
We love it when she wakes up in the morning and smiles when she sees us. Moments like that are precious!
14. What has this whole journey taught you?
The whole journey has taught us how many people live with epilepsy, and how it can impact people and their lives. It’s given us a greater appreciation for those who work in the medical field, especially neurologists who try to do their best to help little brains overcome great difficulties. It’s also taught us what’s important to us in life and its basically just family, happiness and health.
15. What is something you wish you could say to other mums going through something similar?
We would encourage other parents to keep going and tell them they’re doing a great job! We are part of many support groups for parents with kids who have epilepsy and Infantile Spasms and it’s been incredibly helpful. We would recommend those groups. There’s a short little reading called ‘Welcome to Holland’ online and it’s nice for special needs parents to read on a bad day.
Thanks so much for sharing - Ngā mihi nui.