Hello Epilepsy

When your child has epilepsy, it is a constant weight on your mind. Without fail, the moment that weight eases off, a seizure will happen – just to make sure you know it’s still there. It’s thoughtful like that.

 

Brody had his first (six) seizures (that we know of) when he was 21 months old. It’s a hard time to forget, the week consisted of a house move, miscarriage, endometritis and the death of a close family member (thumbs up to the universe for that one).

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Until seizures entered our world, I knew little about them or just how many types there are. In fact, the first time Brody had a seizure we didn’t even realise. It started off with his arm twitching and his head tilting slightly to the side and to be honest; we thought maybe he had a trapped nerve for a minute or two. It got progressively worse as the day went on though. After that godawful day and a few nights in hospital, we underwent an EEG and MRI. Both came back normal and that was that. I spent at least 6 months thinking I’d never be able to sleep again and then I began to think it was all a one off.

 

I was wrong of course. I naively relaxed. I was asleep one night heavily pregnant with Brody in beside me. He started laughing hysterically. I turned over and he started convulsing. There followed a year of seizures, a diagnosis (for once), a few ambulance rides and overnighters, sodium valproate, emergency meds and a care plan.

 

Hello epilepsy.  

 

Epilepsy makes me hold my breath until the seizure stops – the fear that he won’t come out of it. Adrenaline at full pelt. Nervous shakes. Tears at standby for when it’s all over.

 

Epilepsy makes me stumble for my phone to try and record seizure activity for our Neurologist, whilst hating myself for videoing something so awful.

 

Epilepsy makes me count the minutes, hoping it will all stop before we have to administer emergency meds and call an ambulance.

 

Epilepsy keeps me up at night, watching our son on his monitor every time he kicks his legs or laughs.

 

Epilepsy makes me question memories. Was that laughter in his sleep as a baby a gelastic seizure? Did he have absence seizures and we didn’t notice? Is epilepsy the reason he has learning difficulties?

 

Epilepsy affects our son’s already severely delayed development. It can take
him weeks to get back to “normal” after seizures.

 

Epilepsy makes me fear temperatures and febrile seizures. Eyes rolling, lips blue, shallow breath. The feeling like your child is literally dying in front of you and there is nothing you can do to stop it. They are quite frankly petrifying.

 

Epilepsy makes me panic every time Brody randomly laughs – especially at night.

 

Epilepsy makes me irrational. I have cried anxious tears when our baby daughter has made any kind of strange movement, worrying that she could have it too.  Even though I know epilepsy is common in undiagnosed children like Brody with Global Development Delay.

 

Epilepsy has no boundaries.

 

And the truth is, compared to many people whose children have multiple seizures daily and go in to status epilepticus; we have it “easy”. Some people have it so much tougher.

 

As I write, we have been seizure free for 5 months. The longest time since January 2015. We are awaiting the results of a joyous (sense my sarcasm) video telemetry EEG, which will no doubt tell us nothing as our epileptic son – otherwise undiagnosed – is good at cheating tests. Despite having cognitive delays and mobility problems.

 

I feel myself starting to relax again…and that worries me.

 

 

 

 

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19 thoughts on “Hello Epilepsy

  1. In tears reading this because I feel every word my son took his first seizure at 3 months now 3 years old and everyday is a school day with Cole, he’s now 6 months seizure free…. Xx

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  2. This is so similar to what we went through with Emily. Her first seizure was at 7 weeks old. They are quite well controlled now, 1 every 4 or 5 weeks. She had/has delayed development. Things have caught up physically but the learning difficulties are there. She’s 9 now and at a fantastic school, she has lots of friends and just gets on with things. We have had some really awful times because of the epilepsy, I’m sure that you can relate to that. My daughter is beautiful, funny, brave and totally amazing. I’m sure that you can relate to that too! Sending you lots of good wishes for the journey ahead xx

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    1. Thanks so much Michelle. I’m glad to hear she’s doing well and is at a good school. A good school or nursery can make all the difference can’t it? Brody is at a fantastic nursery.

      All the best to you both and I hope the journey here on in is a lot easier. X

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  3. Iam also in tears reading this. My daughter is disabled / special needs, Kirsty has Septo optic dysplasia / optic nerve hypoplasia, she too has global developmental delay. She had her first seizure on 31st march 2016, her 2nd on 26th april 2016, on bank holiday Monday 2nd may 2016, at 2.10am kirsty got up to go to the toilet and had a seizure, i phoned for an ambulance and made my way by car, i arrived before them to find out she took a 2nd seizure lasting 30 seconds. 2 hours later she was taken up to the Neuro ward in Edinburgh sick kids hospital at roughly 6.15am she took another tonic clonic seizure. She has finally been diagnosed as epileptic. We are currently waiting for an EEG apppointment to come through Iam also to attend a meeting with the epilepsy nurse to give her buccal midazmol meds. I too am on edge, iam petrified i can’t stop crying, my stress levels have gone through the roof and each passing moment of every day I pray she will not take a seizure. I too am frightened to relax. x

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    1. Heather, so sorry I thought I had replied to you. Sounds like you’ve had a really tough time. Have you had your EEG appointment yet? I hope she hasn’t had any more since you posted. We’ve been to sick kids so you must be fairly local to me. Here if you ever need to chat. x

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  4. My lo is the same.. Tx for the blog. GDD, epilepsy- he is 3.. Normal EEG, normal genetics testing.. Thank Goodness we finally got epilepsy diagnosis 4 months ago, after 2 yrs of neuro saying febrile, nothing wrong. It’s not fun watching baby seize even without convulsion

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    1. Thanks Deb. Glad you got an epilepsy diagnosis and hope you get one to explain the GDD etc. Keep me posted on how you get on. You should check out SWAN UK. Great charity for undiagnosed families x

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  5. My 18 month old daughter had a focal seizure last week and was diagnosed epileptic. She is a 28 weeker and it has been a difficult time. We are at tenterhooks, though valproate is on. Stumbled upon this while reading random stuff about epilepsy. More power and strength to all of you.

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    1. Lots of love to you. Brody wasn’t much older when he had his first seizures and it was a frightening time. You will get through this. I know it’s scary. If you ever need to talk – I am here. Hope the valproate works for your daughter. It has been great for my son. All the best. xx

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  6. Wow – struck some cords with me there. My now 7 year old son was diagnosed with Frontal Lobe Epilepsy in March, his partial seizures also have a Gelastic aspect where he laughs uncontrollably and then gives you the biggest most beaming smile in the world just before his worried and frightened expression returns just as he realises he’s had another one!

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    1. Thanks Roisin. Intrigued how you came across this post as seems to be one people find!

      Always nice when someone can relate although do not wish epilepsy on anyone. Hope your son is keeping well.

      We’ve been lucky on the seizure front so far this year. Thankful! X

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      1. Hi Laura, I did a dashboard search for epilepsy and your post came pretty high on the list. Luke is not doing too great, his epilepsy is proving very difficult to be controlled unfortunately.

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    1. So sorry to hear that Sam. Here if you need an ear. There are some great online support groups. Brody has had EEGs and MRIs if you want to know what’s involved just give me a shout. Hope that they go well and your son stays seizure free. xx

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