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Major seizure! CP mum.

Sarholl17 Community member Posts: 2 Listener
Hi guys. I'm a mum to a beautiful 6 year old little boy, he was diagnosed with hemiplegic CP when he was born after HIE from difficult birth. Along with the CP came epilepsy.. so far (up until yesterday) up to 8 minute long Tonic Clonic seizures, however yesterday evening (my 27th Birthday) my boy had a serious 30 minute long absent seizure with 20-25 minute unconsciousness. Of course we got blue lighted to hospital on a 'code red' then put down to 'code amber' on arrival as he had just started coming around. The doctors didn't seem majorly concerned and sent us in our way this morning, he seems fine and completely back to his normal cheeky, crazy little self but I simply can not stop feeling like It just isn't right and he's just going to carry on as normal. To put it simply I'm having major anxiety right now that something real bad is a round the corner. Is this normal to feel this way? He's had little seizures since he came into this world but never one like yesterday's. Xx


  • Alex
    Alex Posts: 1,304 Pioneering
    Hi @Sarholl17,

    Welcome to the community. That sounds really scary, I'm so sorry you had to go through that (and on your birthday  :( ). Good to hear that his back to his cheeky self!

    I've moved your post into our Cerebral palsy category to see if other members can relate. @Jean_Scope is this something you'd be able to advise on?
  • Jean_OT
    Jean_OT Community member Posts: 513 Pioneering

    Hi @Sarholl17

    Welcome to the community.

    Over the many years I have worked for Scope I have spoken to numerous parents of children with cerebral palsy who have been dealing with their child having a secondary conditions associated with the cerebral palsy. Often they have been worried about seizures. As I'm sure you know, seizures are common for people for cerebral palsy. Researchers tell us that somewhere between a third and half of all people with cerebral palsy will experience at least one seizure at some point during their life-time. 

    The potentially unpredictable nature of seizures makes them challenging to deal with. People report feeling hyper-vigilant, always on the look out for when the next seizure might occur and worried about what the consequences will be. So in answer to your specific question, enquiring if the anxiety you are currently experiencing normal, I would say "Yes!". In my experience, it is a common and totally understandable reaction to what has happened.

    Of course the incident that you described has only just happened so your emotions are bound to be heightened. It is to be hoped that over time things settle down or, at the very least, your son's doctors are able to give a better prognosis so that you have a clearer picture of the future.

    Sometimes, for a few people, their anxiety will persist and impact on their functioning and well-being. In these circumstance talking to a GP is often a good starting point for getting support.

    There is a page on the Scope website that includes a list of organisations that provide information and support to people concerned about seizures https://www.scope.org.uk/Support/Families/Diagnosis/Epilepsy

    We have also found an American website that includes an article written by a parent whose child has both cp and seizures http://cpfamilynetwork.org/seizures-and-cerebral-palsy/  it includes links and references that might be of interest to anyone wanting further information about the relationship between cp and seizures.

    Best Wishes



    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • Blue Frog
    Blue Frog Community member Posts: 358 Pioneering
    Hi @Sarholl17 I know it’s a lot harder than it sounds - but please try not to worry. My daughter has epilepsy and last year, out of the the blue, she started having huge, very scary tonic clonic seizures. Like you, I was terrified and afterwards started wondering what was going to happen next.

    She is very often absolutely fine the morning after a seizure and the dr’s are always quite relaxed about hers too! 

    Fortunately, adding another medicine (so she now has 2 anti seizure meds) has done wonders and she has good control at the moment.

    Talking to other mums, it seems to go in stages: everything great, little seizures, huge scary ones, increase/change of meds, all ok again. So please please try not to worry. 

    Has your son had an EEG? This is useful to try and work out what part of the brain is causing the seizures. Have you asked if he needs rescue meds? 

    Are there Epilepsy Nurses in your area? Ours are fabulous and help so much. The Epilepsy Action website is very good too. 

    The seizures are definately the hardest part of having a disabled child (for me) I constantly wonder about every funny little twitch and worry even more when she hasn’t had a seizure for a while!!! 

    Getting a video baby monitor has helped no end and you can also get seizure monitors. We tried one but it was no good, as she has several tiny seizures an hour at night (that I don’t need to go to) and I was running downstairs all night. But it might help you and there are charities that do them. 

    Please let us know how you get on x
  • Sarholl17
    Sarholl17 Community member Posts: 2 Listener
    Hi guys. Thanks for the replies. He is on epilim and his dose was upped by one ml he has also been given midazolam now. He only ever had short seizures usually a few minutes the longest one not including wednesdays being 12 minutes but never ever had he gone into unconsciousness until Wednesday. It was the most frightening thing me and his daddy have ever seen! It's just I knew a man many years ago who wasn't so lucky and had weeks of terrifying seizures and he didn't come out as lucky so that's what is scaring me the most right now. If he has one like Wednesdays and doesn't make it. We literally havnt taken our eyes off him. He's usually a very active little boy (he's a bum shuffler) so I don't want to stop him getting on with things but again we are just so frightened it's unreal!
     There was no trigger, and he was completely fine and healthy so I don't understand how it happened. It started with him bumping into things but we just thought he was being silly as he has quite the daft, humourous personality so we let him go about his play and that's when we found him completely limp and unresponsive. He has had a EEG in the past, a few years ago now. I should probably request he has another one? Yes he has a epilepsy nurse she's on leave at the moment but I'm expecting a call from another on Tuesday. I've been researching bed sheets that can alert you to a change in movements.
  • Blue Frog
    Blue Frog Community member Posts: 358 Pioneering
     :) having the midazolam makes a big difference. Just knowing it’s there helps me a lot. 

    I had had a chat with my daughter’s specialist last time I saw him. I was worried if she was getting more brain damage every time she has a seizure - as she seemed to have forgotten some things.

    He said no, the seizures themselves can’t do that. It’s just when they stop breathing and have reduced oxygen to the brain problems can happen. Which I know isn’t ideal, but it put my mind slightly more at ease. 

    The interesting point he made though was - if she learns something that day, then has a seizure the same night. Her brain might not be able to put the new info into long term memory and it could be lost.
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