Tag Archives: hospital

Life after diagnosis

And yes don’t worry there is a life after diagnosis…. it’s just a little more complicated than before! but we fight it disney style : with positivity and sparkles all the way!So for the next couple of weeks life continued. I went to school and all was ok although after mum told the school I was banned from using the PE equipment as I could fall off!. My mum, had to learn how to use rectal diazepam which would get me out of a seizure if it didn’t happen on its own. I was too young to know or remember too much of the details. my life’s roller coaster was going at full speed and downwards.Life again continued on its merry way and apart from a few seizures I didn’t take much notice. As a young child you take things in your stride and grow to live with things. I wasn’t to know this wasn’t normal!. My mum on the other hand had to deal with the stigma of having a child with epilepsy. I now know after mum telling me that some of the parents told their children not to go near me because I had epilepsy!!! If any of those parents are reading this blog now…. shame on you but thank you because you are some of the reason I am the strong person i am today and am campaigning form more awareness. 
At the age of 7 I moved.  This was great fun as we actually moved on 24th November (my birthday) not only was it my birthday but it was snowing too! great fun for me but not so for the move.I was on a bit of a buzz as Topper and I (topper being out toy poodle)  were staying with nan and grandad who had made me a cake and brought me the biggest polly pocket world i’d seen… I was loving it.  I had to change schools and life was better. We were nearer to the rest of the family and I was going to the same school as my mum and cousins had been to. I met a new cousin while at school that i didn’t even know about so life was great. Then things changed Although i loved school, I was worried what the people, and my new friends would do if the seizures (fits as i called them) reared their ugly head. I would had to face another set of kids with the same kinda questions as the last. It didnt happen and I ended loving my new school, friends and life much better than my old school.

The Beginning

I first had a seizure aged 4. I had severe whooping cough, where I stopped breathing for over two minutes. My mum tells me I was held out the top floor window of the house and swung from side to side to make me catch my breath. As it was a cold Octobers evening, im glad to say…. It worked!!!About a week after this and in my first year of primary school and I was sitting on the worktop with my mum helping to make my sandwiches for my lunch box. I suddenly felt strange and funny. i said to my mum “mummy I feel funny”  it was an aura. The pins and needles, the thick feelings the deja-vu. (for those of you with epilepsy you will know this well).The next think I knew I was on the floor. My mum had just witnessed my first grand-mall or as they are now called Generalised seizure. I woke finding myself with her by my side cuddling me. I had no recollection of what had happened, but felt dreadful, tired and sleepy. (I cant remember being scared and mum has told me I took it in my stride- being as stroppy as ever and not wanting to rest!…. that hasnt changed an awful lot now, as I still get frustrated at times!) Anyway I missed some days of school due to my fisrt seizure, I was taken to the dr where I was given the all clear and mum was told to come back if any more problems. It didn’t take long as by the next week I was back in the DR’s room after having 3 more fits. I was sent to the Hospital and the roller coaster began.

I was a bit scared going to hospital. My first hospital visit i met the dr, (dr stefani).  I couldn’t say his name and therefore he let me call him Terri which sticks till this day if I ever pass him by. He quickly examined me including guessing what I had for breakfast! CORRECTLEY (which astonishes me till this day!)  and then sent me for some tests including a EEG, blood tests, X-ray and ECG. A complete MOT!
The tests seemed a bit big and strange but Terri wanted them all done that day, so off we were fore a trip round the hospital. First to Blood clinic, which with a bribe with a chocolate bar and hug from my bear was done. Then X-ray, ECG and then EEG (which I was going to get to know very well over the years). 
After a couple of weeks I had an appointment to go back for the results. During this time I had a total of 8 seizures and my life was going changing. My school were not letting me join in games and mum was obviously worried. 
On the day of my results we went back to the hospital, Terri called me Jamima puddle duck from down the corridor he knew I liked the Jamima puddle duck story! He was so funny.. Mum and I walked into the office and sat  down. 
I cant remember what was said exactly but we were told I had epilepsy. We were told what I could and couldn’t do, and precautions to take. I understood some things, as terri also explained it to me so I could understand. 
That night at home I had to take some medication, tegretol (carbamazipine) they looked like boring sweets.  Mum told me what they were and I had to take two. I did. 
My first ever EEG Age 4.