Epilepsy – Taking charge

Life as a teenage boy can be hard, your noticing hormone changes and your also making important choices. You’ve life choices to make at school and you’re preparing and taking charge of your life with GCSE also taking place.

Lee was busy with all of this going on, he was happy and taking each day as it came, getting up and going to school meeting with friends along the way – after school doing any homework he had and then going out to play football with friends just like many other teenage boy’s.

This was soon to change….

One Sunday morning I had noticed Lee to be having a seizure, luckily with my job I’d had training in epilepsy awareness and noticed the signs. I took Lee straight to the hospital where they run some tests and it was confirmed Lee has had his first witnessed seizure.

Lee was referred to the epilepsy specialist where more test was run over a course of time, MRI, ECG, EEG, sleep deprived test and light tests. Lee was so brave especially with the MRI test as this really scared him, he hated the loud sounds and small space but with us in the room with him 2nd time round (we wasn’t allowed in first time) he was brave and braved it out, we couldn’t have been more prouder.

We awaited Lee’s results which was given at a follow-up consultants appointment where it was confirmed and Lee was diagnosed with Tonic-Clonic and Absence seizures.

Our poor boy…

When Lee was diagnosed he went withdrawn, we noticed a loss in his appetite and he hardly went out with friends anymore. He was put on medication (Lamotrigine) but he’d refuse to take them, he didn’t want anybody knowing about his diagnosis, he would close any conversation down quickly if we was to try and talk to him about his diagnosis, and we also noticed a change in his behavior at home and at school.

It was so upsetting to see our poor boy change before our eyes, we knew this was not Lee.

We set out to get him the help needed..

Lee found it really hard to open up so with specialist help from his epilepsy nurse we sat down with Lee and explained that he IS NOT the only teenager to be diagnosed with epilepsy and he IS NOT this alien he had pictured himself to be in his head.

Lee felt different, he felt embarrassed, he just wanted to hide away but at the same time not be on his own because he was scared. He wanted to talk about it but at the same time didn’t because he was scared and didn’t want to hear or accept the answers. He would look so drained and tired, it was so upsetting.

Lee finds it hard to accept…

Lee’s Tonic-Clonic Seizures would mainly happen at night while he was sleeping so in his eye’s he’s not seeing or witnessing anything because he’s not aware that they have happened, he just notices the side effects the next day – side effects being, loss of appetite, headache, feeling sick, aches and pains along with extreme tiredness and on some occasions unexplained bruising.

When Lee has had a seizure we would keep a close eye on him for a good few hours after, meaning we keep him home from school if it’s a school day (school being fully aware) as he needs to rest and sleep it off as it wears him out – plus for his own safety.

Putting a care plan in place…

We have had a care plan in place at his school informing his teacher’s of what to do if he was to have a seizure whilst at school. When Lee was at school it was noticed he was having absences on many occasions, this is where he blanks out for anything from a few seconds to a few minutes – side effects, headache, sudden tiredness, confusion, confusion to loss of time and to why people are asking him why is he not listening to them.

Lee has just finished his GCSES but whilst he was taking them his seizures got more frequent resulting in a visit to the hospital where we was informed stress can bring the seizures on more frequently. This put us in a very tricky situation as you can imagine. Lee was needing to take his exams but at the same time he was suffering, he did take his GCSES but we kept a very close eye on him and he would rest and unwind that bit more.

During his exams he was given extra time, this was to help with the pressure a bit, this really helped him, we worked very closely with the school and I must say the school have been fantastic with helping support Lee during his time with them.

Lee is still coming to terms with his diagnosis, he still finds some things hard to accept as changes have had to be made but he is more open and willing to talk about it now which is a huge help. He now takes his medication 150 mg twice daily with reminding but he does take them. It has been a very tough time for us all and still is but we are working through it together as a family. Lee is on the right path now to taking charge and not letting it beat him, we couldn’t be any more prouder of him.

***Posted to help raise awareness***