When a child has a seizure

I know people with epilepsy. I have seen someone have a fit from the sidelines and it was scary.

Now that is a possibility every day.

On Monday, just as I am writing the last post, I get a phone call.

“L has a rash and she’s unresponsive.” Preschool. “She told us she didn’t feel well.”

“Oh. OK.” Great. She’ll probably vomit and poo and curl up on the sofa. I prepare myself for a week of unpleasantness. I’m not too worried about the rash as both my children get rashes. They both had baby acne and L suffers with heat related rashes. She’ll also get a rash if she’s annoyed or tired so facial rashes don’t concern me too much.

“Do you want us to bring her to you?” Play leader asks.

“Oh that would be great.” I’m in the middle of trying to get O down for his nap so it would be easier if they came to me. I hang up and finish off the post.

A little while later there is a knock at the door.

“You need to phone an ambulance.” She says, stepping aside to reveal K carrying a limp, pale L. L is gurgling and drooling like she is trying to speak but her tongue is too big. She’s looking around but her eyes are dead. Her face looks swollen.

This is not my child.

I cry. I scream. I feel sick and fear and terror as a piece of my heart is ripped out.

Is she dying?

Can she breathe?

Meningitis?

I pick up my mobile which chooses this fucking moment…this awful horrible moment to freeze and I hurl it across the room.

K and Play leader tell me to calm down

“There’s a landline.” I say. No time to piss around with shitty software.

I run to the phone in the dining room.

I’m holding it together as I dial 999 and ask for an ambulance.

One thing could tip me over the edge but I’m holding it together as I answer the important questions – address, telephone number, whats wrong.

K has taken L in the other room so I can’t see her but I can hear K cooing it’s OK.

I pretend this isn’t happening.

Yes, she’s breathing. No, she hasn’t had an accident. Send an ambulance.

“Madam, I need to ask you some questions.”

“She’s two, she’s in the other room, send an ambulance.”

“You need to be in the same room…”

K brings her through. She still cooing it’s OK. We’re all scared. L is clicking between the gurgles. What if she’s like this forever?

“Send an ambulance.”

“You need to answer some questions madam…”

“I know you get this all the time, but SEND AN AMBULANCE! SEND AN AMBULANCE! SEND AN AMMMMMMBUUUUUUUULAAAAANCE.” I scream down the phone at the dispatcher, his calming method failing. Fucking questions.

Play leader takes the phone and K hands L to me as I sit on the sofa.

Baby stay with us. Don’t go.

I hold her tight, the clicking and gurgling noise burning into my brain. It will stay with me forever. The left side of her face is slack, pulling her features down. Her eye begins twitching. Her stare is so empty I can see her brain short circuiting.

A solitary tear rolls down her right cheek. She’s scared. I can feel it. Every part of me holds on to her. She can’t talk to tell me but she’s trying to.

Stay with us. It’s OK baby. It’ll be OK.

What if she’s like this forever? What if each misfire is damaging her?

“She’s fitting.” I call through. They are still on the phone. “Tell him she’s fitting.”

A paramedic arrives and we lay her down on her side. Her left arm joins in the rhythmic movements. She’s put on oxygen. Her breathing is shallow but regular. The mask bunches up her face and closes her eyes and I hope she loses consciousness.

We strip her from the waist down and shes given rectal diazepam. Her whole body begins to jerk. Once a second, each muscle contracting in unison. Her eyes have rolled back in her head.

Come back. Make sure you come back.

“Talk to her mum, she can probably hear you.” The paramedic says.

I lean over her convulsing body and sing into her ear. Twinkle twinkle little star. Baa baa black sheep. Away in a manger. I tell her she’s a good girl, that mummy is here. I stroke her hair and her leg while they do her sats and blood sugar.

Why hasn’t it stopped? Why hasn’t the diazepam worked?

I’m told to get ready for the ambulance. I get my shoes and my coat on. O is put in his car seat.

I take a second to wander outside and ask myself where the fucking fuck is the ambulance?

OH arrives looking pale and sick.

“She’s having a fit.” I tell him. People crowd round her. She’s starting to come out of it. The jerking has stopped. Her lips are blue and puffy and she stops breathing for a few seconds. It feels like a few hours. I tell them she’s not breathing and we roll her over and call her name. They strip her clothes off so we can watch her chest move.

She opens her eyes.

She begins to respond when we call her.

Then the crying starts. She howls. Over and over and i scoop her up and hold her to me, tell her it’s OK. Tell her I’m here, she’s not alone.

The ambulance finally arrives and we climb in.

They tell me how brave and strong I am. They say she was fitting for forty minutes.

I’m not strong. I’m doing this for her. I want her back. I want my singing chatterbox back. I want the girl who annoys me so much with her toddler logic back. I want her back now.

I sing to her in the ambulance. I sing over her screams. I lull her into rest periods where she gains the energy to yell again.

At the hospital I stroke her hand and her hair.

“I’m going to leave the oxygen there are they sometimes fit again as the medication wears off.” A nurse says, leaving the hissing mask at the head of the bed.

OH and mum turn up and we take turns comforting her.

Finally the crying stops and she looks around.

“Mummy.” She whispers. I go over and she hugs me tight to her with her right arm. She’s yet to use her left arm.

But she’s back. That’s the important thing. She’s back.

I point out her left side weakness to the doctors and they make her stand up, which she does.

It’s normal.

She has Benign Rolandic Epilepsy in childhood

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11 responses to “When a child has a seizure

  1. I probably shouldn’t have read this at 5.20am…I’ve just had to reach for the tissues. Oh. My. Word. When I read the tweets about 40min fit, I thought ‘gosh, that’s aaaages’, but that takes a whole different meaning when the whole experience is read. To spend that long wondering if your first born will ever recover must have been…I can’t find the words.
    I read up about the epilepsy before bed – I hope she has the most positive bits in that she grows out of it and doesn’t have another fit.
    All the best for your recovery too. It’s not something any mum can move on from easily.

  2. You are strong, unbelievably strong. Am bawling my eyes out at how strong you are.
    I’m so sorry you all had to go through that, you’re an amazing mom.

    Nic xx

  3. Oh god, this brought back so many feelings. Those sounds & images that hurt & haunt us.
    I hope she grows out of it & doesn’t fit again, much much love to you all xx

  4. How fucking terrifying for you to have to go through, she is so young and well that is a scary thing to happen to you both.

    I only hope she does indeed grow out of it. I read up on the type she has and it’s quite positive. Who knew they were so many types of Epilepsy. I am glad she doesn’t have to take meds. Caitlyn has suffered so much with her Epilepsy drugs. She has right temporal lobe with a tendency to generalise. The brains are weird clever things. You deserve massive hugs. What with O not so long ago being in hospital too. You are amazing. Never forget that. x

  5. averagemummysaz

    Oh my god. That made me cry. How scary. You where doing the best a mum could, I’m sure L was so comforted with you holding & singing to her. I think you’re both very brave.
    I hope L is ok x

  6. Thank you all. W riting it down has helped get it out of my head. I also talked to OH about it.

    Jo, I haven’t even touched on half of what you went through but I wish there were a way to make it stop hurting. The unexpected replays are the worst. I get the odd quick flash or feeling and it’s enough to make me feel sick and keep me awake. The strength you have amazes me.

    Kirsty – I couldn’t do what you do. I’m just not that strong.

    She is now fine and home, although we have been checking on her regularly. Other people are around today so I don’t have to deal with the crippling fear of being alone with her.

  7. I am not that strong. You just have to carry on regardless. I have my moments where I want to run and hide. Never bloody happens though. I mean it though, you are owed hugs. x

  8. OMG I have just cried too and had goosebumps all over (like when something terrifies you). This is one of the scariest things I have ever read. I never could have imagined what you had gone through until I read this. I can’t imagine going through this myself. I hope you never have to experience anything like this again. And I hope you’re all doing OK. I don’t really know what to say that doesn’t sound empty and meaningless.

  9. There are no words that seem suitable to say, but I didn’t want to read this and just run away. I cried as I read this – it’s terrifying. Have you read Northern Mummy with Southern Children? She’s a good friend and has been where you are now. I hope you never have to experience anything like this again. x

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