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When Lee was diagnosed he went withdrawn, we noticed a loss in his appetite and he hardly went out with friends anymore.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.

epilepsy - taking charge

***Posted to help raise awareness***


  1. I can imagine how difficult it must be especially for a teenager. I’m just glad that he is slowly coming into terms with it and hopefully will be back to what he was like before.

  2. Well done to Lee for being so brave in the face of what must have been a very difficult time for a teen. x

  3. I’m sorry to read that the epilepsy diagnosis hit Lee so hard. I’m glad he now takes him medication though and hopefully he’ll be back to his old self soon. He’s very brave and it’s great that he has such amazing support from you.

  4. I understand what Lee is going through. My cousin has epilepsy and she was diagnosed with the disease when was only 6 years old. I admire Lee and his determination to battle the disease.

  5. Being diagnosed with a health condition can be hard on anyone. I am glad Lee is now more open and willing to talk about it. He is lucky to have you as parents. I wish him all the best.

  6. It’s hard enough having to deal with everyday teenage hormones now to add on epilepsy its not surprising he was not opening but at he’s taking he’s medication and has he’s families support.

  7. It must be a really difficult thing to come to terms with for him but hopefully it will get easier for him and people around him will support him and show him it isn’t anything that is going to change the way they are with him x

  8. my heart goes out to you and Lee. You’re both so brave and strong for battling through this. I hope his seizure become more under control as he gets older.

  9. It can be so difficult to deal with, especially at a time when he is going through so much as a teenager. But he can come to deal with it. I have and it is all good. Just take those meds!

  10. There’s nothing he needs more than support from his family which you are generously giving him and that’s amazing. It’s not easy to bear any condition at all, most of the time people will feel embarrassed or ashamed and they don’t need judgment, they just need understanding and the thought that they are not treated as a person with a disease but rather, as someone normal.

  11. It’s not easy for most teens to go through something like this, there’s already the pressure with school and grades and here you are having to deal with an illness you never asked for. I’m glad you were able to get him diagnosed and even though it was tough at the beginning it’s nice to know that he’s making baby steps towards accepting his condition.

  12. That must have been a difficult diagnosis for all of you, especially Lee – lets hope things improve now the stress of exams are over

  13. I went through this with a friend but I’m sure for a teenage boy the feelings go much deeper. As mothers, we grieve when our children are hurting. It’s a good step that he’s taking his medication.

  14. Gosh that must be such a difficult diagnosis for all of you but well done to him for taking it in his stride. It’s so hard being a parent at the best of times but when your child is poorly or suffering, it’s even harder. Lots of love to you.

  15. I know as a parent what it is like to have a child diagnosed with something that is life changing. So glad he is accepting it and working through things.

  16. I can’t imagine what it must be like to live with epilepsy, constantly worrying about whether an act is imminent. I hope it is something that over the course of time he comes to terms with and learns how to fully control it so it doesn’t control him.

  17. I can’t imagine how difficult it must be to deal with epilepsy bless him it must have been so hard to talk about it but glad school is helping him out.

  18. I could only imagine how difficult it may be. I don’t know anyone with epilepsy, so I don’t know much about it. I’m glad that everything seems to be improving for him.

  19. I’m glad the school has been supportive with Lee’s condition. It must really be difficult for all of you to go through this. I hope you will have all the love and support you can get.

  20. Raising awareness is so important, so other kids like Lee know they are not alone. Also, so other parents know that they are not alone. Thank you for sharing your and Lee’s story!

  21. It must be so difficult for anyone and even more so a teenage boy. I hope you all find a way to accept and live with it.

  22. It must be hard to suffer from epilepsy. I hope it can be controlled everytime

  23. What a courageous young man! I have a close friend with epilepsy and it is not easy to live with and I applaud your son

  24. amazing post and mad respect to you for talking about this. raising awareness and dishing out important information on the subject. I loved what you said about him not being the only one diagnosed and not being an alien. I did that exact thing when I was diagnosed with bi polar, it made me feel alone and an outsider to everyone around me. you are so awesome for helping him through this, it shows great character and wisdom.

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