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Seizures please be gone!

It happened again. Poor Oscie boy had another seizure on Monday night.

 

I came in the door, just back from my hours fitness class and there was a pale Rich holding Oscie in his arms telling me it had happened again, he’d had another seizure. My poor husband – he’s not great usually in situations like this, but he was brilliant.

 

I took over while Rich called for an ambulance. At this point Oscie was no longer fitting, but his pupils were fixed and dilated, it was terrifying. He came round a little but stared into space. He tried to talk but sounded like he’d had a stroke – couldn’t get his words out, couldn’t get his thumb in his mouth. (This is known as the post-ictal period.)

 

Terrifying. Totally terrifying. Even with all of my training and experience it’s terrifying. It’s different when it’s your own.

 

The first response team arrived, shortly followed by the ambulance. They took all of Oscars  stats which were fine and gradually little man came back to us and started talking. Yet again it wasn’t a febrile convulsion.

 

So after a gazzillion tests and a night with no sleep, we were once again referred to Birmingham children’s hospital where Oscie will now have to have another EEG, but this time, it’ll be sleep deprived. That’s right – we have to keep him up ALL NIGHT and then take him for a sleep deprived EEG. Poor Oz.

 

I can’t say thank-you enough to Stafford Hospital children’s ward. The nurses and doctors amazing and always helpful, kind and reassuring. Oscar rather enjoyed his stay once he was feeling better – he loved the playroom and was even allowed to play with play-doh in bed! He thought that was great. (He loved the tractor and trailer!)

 

I can’t begin to tell you how frightened and worried I am. I’m terrified, worried and am behaving like a total neurotic mother again. Last night I checked on him all through the night. (I was already up with a poorly Betsy who had a temperature, so it was no bother!) Oscars monitor volume was on so loud last night I could hear him snoring!

 

So today I’m an emotional wreck. Two nights of no sleep, a poorly girl today and a poorly boy yesterday has left me trying to find my tough mode. I’m a bit of a silly mummy mess but I know its sleep deprivation and shock. I burst into tears everytime I think of what happened and I’m dreading the results in a few weeks time at BCH.

 

Oscie boy is back to his old self pretty much. He’s eating like he’s not eaten in weeks, and he’s a little overtired, but other than that – he’s chasing the dog, playing trains and building caves for his dinosaurs. He’s so brave and awesome.

 

Seizures please be gone. Please let that be the last.

 

 

 

 

8 Comments

  • Crystal Jigsaw

    So very sorry to read this, flower. It’s incredibly frightening and being epileptic myself I can totally understand how you feel. What I do know is that Oscie may now be diagnosed with epilepsy and be given regular medication to control the seizures. However, it is common for young children who are otherwise healthy to grow out of epilepsy so don’t worry too much at this stage. The sleep deprived EEG will give better results because we (or those prone to seizures) show more brain activity when tired/asleep. It’s necessary I’m afraid but it is for the best. The fact that he’s so young and you’ve got what seems to be an efficient medical team helping you, definitely goes in Oscie’s favour. Whatever the outcome, they will sort him out and help him every way they can. There will be things he may need to avoid, foods, drinks etc, including caffeine, grapefruit, certain medicines, and depending on whether he is diagnosed with epilepsy, and if so what kind, if it’s like mine which is photo-sensitive epilepsy, there are certain things he will need to avoid like flashing lights, video games, spending too much time in front of a monitor, going to the cinema. Make sure he drinks plenty of water and always ensure he eats regularly. You will get there. Please don’t hesitate to ask anything if you need to – have a rant, a vent, a cry, ask a question, whatever. I’m here. [email protected]

    Lots of love,
    Kathryn xx

    • Fi

      Thank you so much Kathryn – I really appreciate the help/advice.

      The consultant said the first EEG could be negative because they are done after sleep so what you’re saying makes sense.

      He’s exhausted today and starving! I hear that’s normal too.

  • Mary Keynko

    My girlie suffered febrile convulsions with every hight temperature until she was nearly 4, so I kinda understand what you’re going through. So many nights in hospital, so many sleepless hours in an armchair on the ward. I hope they can sort your boy out – wishing you all the best and strength to get through it! xx

    • Fi

      Thanks Mary – hospitals are no fun, but Stafford really made things a little easier. They set up a bed for me, made me coffee, kept reassuring me. Fabulous team on the Shugborough kids ward.

  • Emma

    Poor O and poor you. Horrid to see. I used to tell lee and my parents it was prob far worse for them seeing me in a fit than it was for me. I don’t remember anything am just incredibly tired afterwards. An EEG can come back negative even if it is epilepsy. Likewise you can see which part of brain is affected in EEG but never fit. Epilepsy is still very misunderstood and although that doesn’t help you I am trying to say an EEG is not the be all and end all. It can’t tell us everything. EEG shows my hotspots in the brain but I have been medication and fit free for 14 years. Yet it is stil there. Take care hinny, you are. Fab mummy.

    • Fi

      Thanks Emma – gosh I had no idea you had epilepsy! Thanks so much for your input and kind words. I’m really worried – so much to think about.

  • Chelsea Williams

    Oh chick, big hugs to all of you! Pops had febrile convulsions when she was younger, so frightening. I am so neurotic about any kind of temp. I have a docs thermometer thingy, sad I know. I hope you get the answers you need. Big mummy hugs, thinking of you xxxxx

    • Fi

      Thanks for taking the time to comment – all these experiences of others really help, so big thanks.

      I’m currently lying wide awake – Oscies monitor is on full volume and it’s ridiculous. I can head every sound and can’t sleep. I need to take a step back and try and calm!

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