I love the responses I get from people who have seen something in my posts that have resonated with them.
I also love reading the blogs of others who post for Firefly. One topic I see discussed a lot is epilepsy and seizures.
Up until now I have been lucky enough to never warrant writing about this topic.
Until this month.
When Amy was born she was having constant seizures.
Eventually day by day in NICU we would be given more and more good news.
“She’s no longer ventilated.” “She’s needing less oxygen.” “She can breathe for herself” and so on.
The seizure medication was eventually weaned down and by about day 10 we thought we had said goodbye to seizures forever.
We were told there was about a 50% of seizures returning… cerebral palsy and seizures are almost synonymous with approximately 1 in 4 people with cerebral palsy having some form of epilepsy.
Amy is 4 now and naïvely I felt we had escaped the whole epilepsy journey until 21 days ago.
It was just the average school holidays morning. I was in and out of Amy’s room preparing feeds and meds.
The best place to keep her in the morning is relaxing in her bed with toys and videos – this is the only place I know she is fully safe unless sat in her wheelchair with me.
I walked into her room to find her blinking unusually.
“What’s up Amy?” I asked. At this point I thought she had something in her eye and was blinking to try and fix it.
Then as I analysed her further I realised she was foaming at the mouth, eyes and mouth twitching on both sides, and her whole body trembling as if she was vibrating.
I was absolutely gobsmacked. I had no idea what to do.
I was home alone with her and felt completely hopeless. My heart was pounding and I felt shaky.
Why was this happening? Did I do something wrong? Why would I leave her out of my sight at all?
She was showing no signs of stopping so I immediately began to film her with the iPad whilst simultaneously calling for an ambulance.
I stayed as calm as could even though inside I my heart was breaking and chaos spun round and round in the pit of my stomach.
My poor girl. She has been through enough already. She has enough challenges to face.
Eventually the trembling stopped. She didn’t fall asleep but she looked exhausted and disoriented. By the time the paramedics came she was what I now know is “postictal”. (The altered state of consciousness after an epileptic seizure.)
When we got to hospital I was so glad I had filmed the whole ordeal. Two paediatricians watched the video and agreed yes, definitely a seizure. I am told it may be a one off, but it is likely to happen again.
Since the event it had me thinking about Amy’s behaviour in the week running up to the seizure.
She had developed some new movements and new habits and I had been finding myself saying to people “she’s like a different child at the moment. Something isn’t right, but I just don’t know what.”
Fast forward a few weeks and we have now been trained on administering rescue medication which she will now take with her everywhere she goes. We have had an EEG and are awaiting results. And we have met one of our local epilepsy nurses.
She explained to me that there are about 40 different types of seizure and listened to my every whim and concern.
I explained the new behaviours I had seen and explained how I thought I was being paranoid and over anxious. She validated every concern I had and assured me that I am just being a good mum and should always trust my instincts.
It was then that Amy demonstrated the same behaviours and movements that I had just explained.
Recently, she has been having periods of going quite red, thrashing a bit, and then pulling her hair. By pulling her hair I mean REALLY pulling her hair, such that we recently had to get her hair cut very short and regularly have to put socks on her hands.
She has also started to do a lot more movements with her mouth and also sudden extreme changes of mood.
I had sort of rationalised all of these behaviours as things like sensory seeking, exploring her movement, or frustration.
But it could perhaps be that she is having focal or partial seizures where she is seemingly fully alert, but something doesn’t quite feel right and scares her, and this then sets off her hair pulling.
The hair pulling seems to be her reaction to feeling scared as usually a sudden loud noise will set off her startle reflex and make her pull her hair.
It has been difficult trying to find that balance between over analysing everything she does, and actually assessing her knowing that something could be happening. So now we are waiting for a 24-hour EEG and a possible introduction of regular medication.
So, it has been a huge learning curve for me. It shocks me to think how I felt that day when I came in and found her unresponsive to think that I have met people whose child can do this 100s, sometimes maybe 1000s of times a day. It amazes me what parents of children with epilepsy must encounter, and how hard it must be for that child experiencing something so terrifying and draining.
I take my hat off to everyone who is dealing with that when, I bet to some people, our experience looks like a good day seizure wise!
I hope that this encounter with seizures is just a one off, and that those rescue meds never need to be used.
But part of me also fears that this is just the start of what is to come.
I am humbled and amazed once again though by the attentiveness, care, and help we have received from paramedics, hospital staff, nurses, just everyone.
I am grateful also to our amazing family, especially my parents who rushed to help us get home when we were stuck in hospital without Amy’s wheelchair and wheelchair van!