Living with an epileptic baby….

by

Its been six months since BB had her first seizure. I remember watching my smallest turn blue and convulse and I genuinely thought I was losing her. The horror of not knowing what was happening to my baby was insurmountable. Tears spring to my eyes as the memory surfaces of the fear that grabbed hold of my heart when the fit controlled her.

When we were first diagnosed with epilepsy I felt relief flood through me as at least we had a name. She was recognised with a condition, and a condition we could treat.

Yet in the first instance I questioned how comfortable I was medicating my daughter twice a day. Whilst I fretted and doubted, my little girl had a cluster seizure, the worse she had ever endured, back in hospital once more I learnt quickly to ignore google and trust modern science.

I don’t blog, or talk much about my daughters epilepsy. Primarily because since her medication began it is under control. From my research into the condition we are one of the lucky ones who got diagnosed, get given the right drugs and get to live a normal life.

BB is perfect, she still has frequent absences, where she seems to vacate herself and fly to Neverland for a bit. I’d like to see them end, as like any mother, I don’t need more reasons to lose sleep in an evening.

The pediatrician seems happy, he feels my little love is a little lazy as she approaches 14 months and still refuses to move. But he seemed impressed by her wide vocabulary of ‘mumma, dad, hullo, hiya, and owerrrr (owen)’. 

Living with epilepsy for us means just the subtle st of changes. Although seizure free for four months we can never leave her alone, not even for a second, the nanny dog has not been trained in administering rectal diazepam so she needs a grown up around, just in case.

As I said, we are one of the lucky ones, epilepsy is a strange unknown condition and I have spoken to many mums and dads whose lives are dominated by it.

We could still be at the start of the journey, but I like to see it as a small piece of luggage we take with us wherever we go.

Thanks for reading.

37 thoughts on “Living with an epileptic baby….”

  1. Well done for putting this post together. I can only imagine how tough a condition like this is and am truly thankful and grateful mine have no such disease. I’m heartened though that, as you say, you’ve been fortunate to have had it diagnosed early. My niece suffers epilepsy and recently (at age 12) has ad her first attack for a long time.

    I don’t imagine your vigilance ever changing. Although the pediatrician has said she may not be developing as fully, what can replace the loving family and support she has around her? Well done all of you.

  2. Hugs for you and BB. My younger brother has epilepsy,he’s now 27. Seeing him fit and regular Hospital visits were part of our childhood. He has coped amazingly well,I’m very proud of him.He has to take his meds every day,he cant drive and he cant drink alcohol but he has a wonderful fiancee and Daughter whom he lives with and a good job he loves.He still has fits but he’s learnt to spot the triggers and can help to avoid them. I guess what I’m trying to say is it can get better,never go away but get better.

  3. I didn’t know about your daughter – so sorry to hear this. About a year ago I was shocked to discover that my mother had epilepsy as a child – back then it was the cause for shame and embarrassment and so she had never told any of us – despite not suffering since being very young. At least as a society we are more accepting now which I suppose is a small consolation. Hugs to you both. x

  4. I can only imagine the horror in witnessing that first fit, how terrifying it must have been for you. Like you say, I guess it makes it more manageable to know what you’re dealing with now and thank goodness the condition seems to be under control with medication. I have immense respect for the fact that you don’t let it dominate your lives but it must be hard having it lurk in the background. I’m sure having such a wonderful and loving family makes it easier to deal with for both BB and for you xx

  6. Blimey is it really 6 months? I remember how horrific it was for you, especially the not knowing. It was interesting to read about Kate’s mum. I have a 40 year old friend with epilepsy and he was brought up to feel ashamed of it. This astounds me and makes me realise how far we have come. There is still a stigma attached to disability. But epilepsy??? For fucks sake! You are amazing, You cope so well with it (as you did at the awful first convulsion). You don’t go on and on about it like I do about Aleyna. You are an inspiration and I love you lady. BB is a VERY lucky little girl. Huge hugs xxxx

    • Oh I love it even more when you swear on my blog.

      To be honest if it wasn’t for her meds some days we would forget she has it.
      Just fingers crossed the seizures never come back x

  7. I’m so sorry to hear this but glad she is doing well. And clearly you need to get a smarter dog!!! Or at least one with some first aid training. 🙂 xx

  8. Glad she is doing so much better and you haven’t had any more emergency episodes. I hope it’s something that’ll just stay dormant for her. She definitely sounds a very happy baby whenever you talk about her.

  9. You probably already know about my epilepsy. I’ve had a pretty hard time with it and am now on a different medication which seems to be working. But I take each day as it comes. That’s whats so hard about this condition. You don’t know what’s around the corner. You seem strong and very capable of looking after your baby and I’m sure she will go on to live a happy and healthy life.

    CJ xx

  10. Oh my! Not quite sure what to say – I am glad that things seem under control but I am so sorry that your darling little girl has this condition. 🙁 so very distressing for you all!

    What strength you show for writing this!

    Sending you a big hug!

    Maggy

  11. I did not know about your daughter either, but I also have a friend with epilepsy who lives a normal life with a lovely fiancee and two children. Glad it’s under control xx

  12. BB is just perfect – a perfect, beautiful, happy little girl. My (doctor) sister commented after F’s party what a “bright little thing” BB was – and F is very jealous of her wide vocabulary! Another brilliant post – and one that I think lots of parents with newly diagnosed little ones will find uplifting. Love you and love BB. (Oh and of course the twins too!) x

  14. It must be so tough to have that never alone for an instant thing, but you keep on going with such amazing strength, humour and dignity…

    you’re just an absolute star.

  15. As a trainer of epilepsy and rescue medication I was interested to read this. I am so glad that you are taking a pragmatic view and getting on with your lives.

    My neice has recently been diagnosed with epilepsy. At a family meal last month my 90 year old aunt commented how normal she looked!

    It wasn’t that long ago that epilpesy was seen as something to be ashamed of. As a student, I nursed a lady in her 50’s that had been commited to a psychiatric ward as a child – because of her epilepsy. She had been there ever since! Thankfully that doesn’t happen anymore.

    Blogs like this will help educate more people about how ‘normal’ people with epilepsy are. Excellent.

  16. Hi Jane,

    Your story could be mine in many ways. I am from Burnley and stayed in Bristol after finishing uni here. I have 2 children aged 6 and 3. The eldest talks ‘posh!’

    The youngest is still struggling with learning to talk. He had his first seizure at 8 months when my OH was working away (I think it was worse for him actually). Over the following few weeks we were back and forth to the hospital inc stays overnight and numerous tests etc etc. He’s now been ‘big’ seizure free since being on his medication although was having absences and the odd little twitchy thing until last year when they seemed to stop. He’s due to be slowly weaned of his meds in Jan next year with a try it and see approach. Not really looking forward to that. In addition he was slow to walk (20 months) and talk (nothing much till he was 2) and he still struggles with speech. However, I am told by his consultant that these are all within normal boundaries and despite being tested for every possible chromosome and other disorder there seems to be no explanation for any of it. We too have got used to carrying his bag of emergency meds around and making sure nursery and pre-school carers are trained to administer it (not always easy). We changed to buccal midazolam when he was a toddler which is easier to administer than the rectal diazapam. This was suggested by the epilepsy nurses who have been fantastic to us. Hope you have access to one equally good team.

    Hope all goes well for you over the coming months
    Caroline

    • Thanks Caroline

      Thats a really inspiring story! and from a burnley lass!

      Please keep in touch and let me know how it goes with weaning him off the meds,

      we are currently under private care but due to be transferred back to nhs shortly.

      thanks so much for your comment, it means a lot x

  17. BB is perfect and gorgeous and as everyone has said you cope so well. S still absences, which scares me a lot, so I can’t imagine what you have been through.

    Bring her over then she can teach baby H to talk 🙂

    Hugs xx

  18. Hey Jane,

    I have seen children take fits before and found my own sheer helplessness difficult to deal with. It’s bad enough to watch it happen to someone else’s child but to happen to your own…

    The daughter of a friend of mine took ‘drop fits’. She’d just be standing there and then hit the floor. At one point they realized a certain colour (either blue or yellow, I can’t remember which) triggered her.

    I’m glad that the medication is working pretty well for BB. I wish you and your family a happy, healthy future together. x

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