Epilepsy diagnosis and the EEG.

October 2, 2016

My brave boy

If you’ve been reading along Dexters epilepsy journey so far you’ll know he recently had another fit after not having one since the start of August. After this most recent one, the consultant that we saw in A&E emailed all of the details to the doctor that was already dealing with Dexter. His office then called us the following Monday saying that instead of waiting until November, they could actually see us that Wednesday and they were very interest in seeing the video that we’d managed to film. At last, they were starting to look into it. Here’s what happened at that appointment and the EEG test that followed.

Epilepsy Diagnosis.

On the Wednesday, we headed off to Peterborough City Hospital. While we were in the waiting room, I was looking at all of the leaflets on epilepsy and grabbed a couple for Dexter’s preschool. Forewarned is forearmed or so they say. They also had a handy little medical sheet in a clear wallet that you fill in with the sufferers name and emergency contact details and some information on the type of fits they have. I grabbed one of these to go in Dexter’s bag.

During our appointment, the doctor looked at our video and then showed us a very similar one he had on his computer. He pointed out the way Dexter’s arms were positioned in comparison and various other similarities. He read through all of our notes thoroughly, even picking up on my sisters death very sensitively, which I appreciated.  He confirmed what we already knew and diagnosed it as epilepsy.
Even though we already knew what it was, Liam and I both felt a bit better hearing it from the doctor. He rang through to Addenbrookes and got us an appointment for Dexter to have an EEG that Friday and then wrote out a prescription for some medicine. He advised us not to start the medication until after the EEG so as not to skew the results.

Friday morning, I realised I hadn’t actually asked any questions about the EEG so had no idea what to expect and therefore wasn’t sure how I could prepare Dexter. Luckily his cousin had had one a week or 2 prior, so my sister send me a couple of pictures and I was able to tell Dexter a bit about what would happen. I feel it’s important to be honest with him about things like this. He may only be 3 years old but if I can manage his expectations, then it’s going to be easier all round and he’s not going to be unnecessarily stressed out or upset.

The EEG.

EEG on a 3 year old. Epilepsy

Lots of wires, but he took it well.

So.. what happens at an EEG? Well, I’ve since read a few stories and each of them have been slightly different so I can only tell you about Dexter’s. First thing I will say.. Take a hat!

“An electroencephalogram (EEG) is a recording of brain activity. During the test, small sensors are attached to the scalp to pick up the electrical signals produced when brain cells send messages to each other. These signals are recorded by a machine and are looked at by a doctor later to see if they’re unusual.”- NHS website

We sat in the waiting room which can only be described as dingy. The magazines were barely held together, the leaflets were sort or scattered and what few toys there were, were very clearly well used. Completely different to Peterborough Hospital. When we were called in, Liam was advised to sit Dexter on his lap and play with him as a kind of distraction. He had a choice of colouring or playing with stickle bricks. They went with stickle bricks.  The. Doctor started playing with Dexter’s hair and told him he was going to give him a new hair style.
Dexter sat very calmly playing with Liam while this stranger was touching his head. Honestly, I thought the guy was a little odd. I know he was trying to reassure him but if it were me, I would’ve been more freaked out than relaxed.

So anyway. The doctor guy wheels over a little machine on a stand that has about 20 really thin wires attached to it. Each of those wires has a little bit on the end that he then starts to ‘glue’ onto Dexter’s head. Dexter again took this very well indeed. Once all of the wires were on. The doctor placed a sort of stretchy, netted bandage thing over the top to hold them in place. A camera in the corner of the room filmed the whole test and the wires sent data to a computer to record it all.

Epilepsy. EEG test on a 3 year old

During the EEG

The actual test itself last 20 minutes, during which Dexter completed a range of tasks including blowing a windmill for a few minutes to make it spin round, closing his eyes for 20 seconds at a time and even watching various speeds of flashing lights. Once the test was over, the doctor asked if he could hold my phone up to the cameras so that it could record the video of Dexter’s fit. He said it makes a difference if they can actually see what happens to him during them.

Once they had all the data recorded, he took the head bandage thing off and then pulled all of the wires in one smooth motion. It was very quick to take off but it really gave Dexter a new do!

At this point, I realised I should’ve bought a hat. Filled with lumps of glue, Dexter’s hair was a mess. The doctor tried to clean it with water and then comb it through but that just made it look wet or greasy. At least if he had a hat, we could’ve hidden it. He’d been through enough for one day, I didn’t want people staring at him for his hair looking so bad.
The doctor dismissed us and we were on our way. We should hear about the results in about a weeks time. Dexter is now on his medication. He’s slowly building it up from 1 ml, twice a day, to 5 ml twice a day in 5 weeks time. He started his medication on Saturday morning

We also have to take him for an MRI scan some point so that they can rule out things like head injuries or brain tumours.

So, it has been quite stressful and to be honest, a bit of a slog but I mainly wanted to update you in case you are going through a similar thing. If I can help in anyway to prepare you then that’s great. Please take a hat though.

EEG Test on a 3 year old. Diagnosing epilepsy

Messy Hair, Don’t Care!!

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  • Reply Sam Smith October 3, 2016 at 10:13 am

    This post is fab. I also didnt ask any questions about the eeg. Im going to show this to Junior just before we go for his eeg. Im so glad you wrote about taking a hat! Junior would be mortified walking around with messy hair! (Hes 10, inage is everything lol) xx

    • Reply Leslie Rickerby October 3, 2016 at 10:55 am

      Haha I wish someone had told me! We ended up walking round Cambridge like that! Hahaha
      Glad it helped xx

  • Reply Julie cowie October 28, 2016 at 4:28 am

    It’s amazing how we don’t ask the obvious as I didn’t ask either but thankfully Rosie’s seizures are not her brain as such. Your updates really touch my heart Lil. I know you guys have to but that doesn’t make being brave any easier. You are amazing parents xx

    • Reply Leslie Rickerby November 6, 2016 at 5:42 pm

      Thanks Julie. That means a lot. xxxx

  • Reply Chris Kent December 2, 2016 at 2:43 pm

    I remember having mine back in the 80s. I don’t recall getting a hairnet.

    Did they do anything to make it fun?

    At the end of mine they took me through to the machine that was showing the readout and got me to breath and blink etc. showing me the difference in brain waves. They then tore this bit off, annotated it and gave it to me to take to school.

    I suppose it’s more digital now rather than multiple needles moving over a piece of paper.

    • Reply Leslie Rickerby December 8, 2016 at 10:34 am

      No they didn’t do anything fun really. The guy was a bit strange. I bet that was something interesting to take to school. I think Dexter would’ve liked that.

  • Reply Claire December 31, 2016 at 2:42 pm

    Poor Dexter. He doesn’t look impressed. Love reading your blog posts. Keep up the good work. X

    • Reply Leslie Rickerby January 1, 2017 at 2:26 pm

      Thank you my love xxx
      No, he wasn’t all that impressed haha.

  • Reply Alisha February 8, 2018 at 12:18 pm

    Hi, I got passed your blog from my mum through your friend Hannah. My daughter, Maddison is 2 & suffered her 4th seizure last Wednesday. This one seemed worse than the test, luckily we was in hospital & she had 6 doctors working on her. The consultants aren’t sure if they’re febrile or epilepsy but she’s booked in for an EEG & a MRI. She sleeps for a long time after the seizures, she goes blue all over & her longest fit lasted two hours only having jerking movements down her left side of her body. She starts her seizures by having absent seizures. I’m so scared. So paranoid & just reading your blog has had me in floods of tears. You’re so brave to be writing all of this, Thank you!

    • Reply Leslie Rickerby February 8, 2018 at 12:44 pm

      Oh Alisha,
      It’s so scary, isn’t it? Especially when they haven’t actually diagnosed it. I remember that part very well and thinking at least if they had said ‘Yes, It’s epilepsy’, at least we would know what we are dealing with. I suppose at least when she goes absent, you’re able to know whats coming next and get her into a safe position. Dexters fits just came out of nowhere. We didn’t have time to prepare. I hope they don’t keep you waiting too long for her tests. Dexter is on 7ml of Epilim, twice a day at the moment but they hope to wean him off in about a year. A lot of children do grow out of it. Hopefully both Dexter and Maddison will too. Please feel free to message me any time. Sending love x

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