26.03.17 Epilepsy awareness Month & I’ve finally decided to write Olivia’s journey with Epilepsy.
It’s ok , you’re going to be ok , mummy’s here it’s ok sssh don’t cry baby everythings going to be ok
I would repeat this numerous times a day as another violent seizure took hold, causing Olivia’s body to stiffen and jerk. The majority of the time I would be headbutted, pinched or scratched as her body would be taken out of her control.
WHAT EXACTLY IS EPILEPSY?
Epilepsy is a neurological condition, It’s not just one condition, but a group of many different ‘epilepsies’ with one thing in common: a tendency to have seizures that start in the brain. Epilepsy is also a physical condition because it affects the body.
There are over 40 different types of seizure!
Olivia was diagnosed with “Symptomatic focal epilepsy with secondary generalisation”. Simply put it means Specific cause unknown, epilepsy has been caused by Widespread brain damage. This type of epilepsy causes multiple types of seizures that are hard to control.
And boy was it! It took almost a Year to find an anticonvulsant that worked. What’s upsetting is we’re the “lucky” few some children & adults go years trying to find balance.
Heat / being too hot
LET’S START AT THE BEGINNING
Spring/Summer 2013 We began noticing Olivia would zone out for a couple of seconds, multiple times a day. Because they began and ended abruptly we weren’t sure how long this had been happening for. After multiple EEG scans Her Dr diagnosed her with Simple absence seizures, which later progressed to complex absence seizures. We were hopeful as you can essentially “grow out of them”.
What we didn’t expect was a few months later we would receive a devastating diagnosis of infantile spasms, this type of epilepsy is rare and very difficult to diagnose and treat. Left untreated it can cause detrimental development delays. Unfortunately, children who do develop this are at greater risk of developing Autism and other disabilities, due to the effect it has on the brain.
One day late 2013 Olivia began making a strange noise and her lip started to twitch. I don’t know why but I pulled out my camera and recorded it for her Dr something was telling me this isn’t good. A few seconds later her head began twisting to the left and her body began frequently and powerful “Spasming” this happened between 10-20 times for approximately 3 minutes. The fear on Olivia’s face was unsettling, remaining calm was the only way I could support her.
Afterwards, I sat in the bathroom for what seemed like hours and cried, I couldn’t comprehend what had just happened and why it was happening to my baby who had already gone through such traumatic events.
Olivia began to regress, she didn’t smile, she began sleeping pretty much all day. She looked exhausted.
Soon Olivia was taking four anticonvulsants – they didn’t work.
PUTTING MY BABY ON STRERIOD TREATMENT
As with taking any medication, there’s always precautions. The only knowledge of steroids I had was what I read in the media! What I didn’t know was Prednisolone (high doseSteroid) can effectively treat infantile spasms within weeks. We knew there was a high risk as they were a “last resort”. This option was not taken lightly & We had daily stats checks for high bp. Olivia had now been having infantile spasms numerous times a day for months. My child as I knew her was gone, she was not the same baby. This seemed our only option.
Finding a solution for Olivia’s seizures was long and filled with trial and error. Weeks rolled into Months and it seemed we would never be able to help our baby.
Finally finding balance when Olivia was 1 year old was incredible, at first, her seizures were controlled but side effects made her incredibly sleepy, this we could live with!
FIVE STEPS FORWARD 10 STEPS BACKWARD.
January 2016 Saw Olivia being admitted to hospital with a suspected ear infection. Due to Olivia’s history, we have open access to hospital meaning we don’t need to go through A&E. Thankfully the DRS saw something that day & decided we should spend the night, a few hours later Olivia began having a Grand Mal seizure. I have never been so terrified luckily it happened during shift change and 6 Drs rushed over.
Nurses monitored Olivia and decided she required rescue medicine. One hour later she had finally stopped seizing and fell asleep. (Rescue medication is never an easy decision as it can cause respiratory problems).
Seeing your child suddenly become unresponsive, shaking & foaming at the mouth is an image I’d happily forget but can’t. I’m so thankful we were at the hospital.
Today only has been seizure free for almost 2 years! She still requires medication, however, there are discussions about reducing dosage & eventually weaning her off them. Which is terrifying! We have only experienced two seizures since due to an illness known as febrile seizures.
We finally have our little cheeky girl back as we know here. It’s incredible how much she has progressed.
*I’m going to go into more detail at a later stage of each stage through epilepsy as they’re very detailed.