On Tuesday 26th March 2019 it was Purple Day! For those of you who are unaware of what ‘Purple Day’ is, it is the international day for epilepsy. It is a day where people around the world come together to raise awareness of the condition and make a difference to those affected by epilepsy.
Finding out you have epilepsy is scary at any age. Finding out our son had epilepsy just after his third birthday was terrifying. We were in the middle of moving house, lots of upheavals, messed up routines and living in limbo. It was like any other day, I was off to work (I worked shifts at the time) and I sat and watched as he ate a biscuit. He suddenly started coughing, almost choking. There was something odd about it as he went blue in the lips, they were smacking, starry-eyed and dripped excessively. Before it had really started, it was over and he cried and seemed dazed. I gave him a cuddle and we all assumed he choked on the biscuit. I went off to work and left him to his evening but on arriving at work. I had five missed calls from my terrified husband. He’d had the same gazed expression, choking appearance, blue lips etc every 15 minutes since I had left. He was tired so suggested they do his usual routine, put him to bed and hopefully he’d be okay. An hour later and another 10 missed calls, it was apparent that something was wrong. He’d been doing it while asleep. I was a 30-minute drive from home so shaking like a leaf I approached my Manager. I explained the situation and called 111 from the car (I have a hands free kit connected to my car). They were speedy and dispatched an ambulance.
When I arrived home, I met the ambulance crew who had just arrived and were assessing him. He was still having episodes every 15 minutes and seemed confused and dazed. My husband was a bundle of nerves. Off to the hospital we went for medication and observation. It was confirmed it was epilepsy, highly likely linked to his brain damage and cerebral palsy and so began our epilepsy journey.
We have never been seizure free and every six-eight weeks we usually have an episode. I thought I would take the time to share what we have learnt over the last five and a half years.
1. Seizures – No seizure is the same, no episode is the same and you will continuously wait or expect the next one and sleep seizures really are a thing!
The media has always lead us to believe that seizures are the ‘drop’ ones where you drop to the floor, shake and go unconscious, we quickly realised that there are:
1. Focal/Partial Seizures – Can remain conscious and aware.
2. Absent Seizures (Petit Mal) – Can appear to be staring or doing normal things.
3. Convulsive Seizures (Tonic-Clonic) – Usually the person will loss full conscious and will drop, jerk and have no awareness and will awake dazed and confused.
4. Drop Seizures (Atonic) – There is awareness of attack, just abruptly hitting the floor.
5. Clonic Seizures – Part of the body has jerky movements
6. Tonic Seizures – Infrequent and usually associated with other conditions, they involve facial muscles the upper body, usually involving loss of bladder/bowel control.
7. Myoclonic Seizures – Jerky movements, that can affect any part of the body.
At some point or another, Thomas has had the misfortune to have experienced five out of the seven types.
2. Medication – There is no magic cure, five years on and although they are under control, he still is prone to ‘clusters’ and I mean a day of ‘clusters’. His record his 19 in a day! We have rescue medication for this.
3. Triggers – It would have been easier, had a trigger been obvious. Apart from stress and citric fruits like fresh oranges. Nothing was ever confirmed but to some people triggers include flashing lights, stress, lack of sleep, certain food, drinking alcohol and changes in the weather.
4. Dealing with anxiety as a family – You can never prepare yourself for the news that your child has a life-changing condition. When I first found out I ‘googled’ and wished I hadn’t. There was so much information, too much information that it was hard to understand how we would live like this. Different medications meant different side effects, then there is the controversy surrounding medication and development delay; unfortunately, we didn’t have a choice.
It was hard, in those calling ambulances, trying to remain calm for our six-year-old daughter and trying to get Thomas the help he needed it. After the few hospital trips, I realised that it was unnecessary stress for Thomas as he was kept in overnight for observation and never understood why he couldn’t leave.
It does get more comfortable, but at the back of my mind is. ‘Will it is today.’ Having never lived it, it’s hard for others to understand the strain it puts a family under. Always watching, waiting for the next one.
We’ve learnt that epilepsy has no consideration for family events, days out, Christmas, birthdays. When one is coming, it will come and plans change. We’ve driven to theme parks only to have a seizure in the car on the way. I’ve had days out plans and had to cancel them. I do not mean to sound selfish, really it’s just about the circumstances that ‘normal’ life gets put on hold for 24 hours.
Epilepsy First Aid
1. Keep calm.
2. Protect the child from further injury
3. Do not restrain the person.
4. Do not insert anything in the mouth.
5. Roll the child on his/her side after the seizure subsides.
6. If a seizure lasts longer than five minutes or repeats without full recovery, seek medical assistance immediately.
7. Talk gently to the person after the seizure.
For young children and their families, it can be terrifying. Today, seven more children will be told they have epilepsy, it will change their lives forever. This Purple Day, the money you raise will help more children and their families come to terms with epilepsy, know they are not alone and give them the confidence to deal with their diagnosis.
Having a son with epilepsy changed our lives. I wish that we’d been offered counselling, support dealing with anxiety, help as a family, I wish that someone had sat us down and said ‘I’ve been there, let’s have a coffee?’ Sadly, all too often like us you are given a leaflet and told to ‘google’ support groups.
Was this the same for you? Do you wish you’d received more support? Do you think things should change? Perhaps you are still struggling with your epilepsy or your children?
Thanks for Reading…