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  1. #1
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    Default Baby with epilepsy - can't sleep due to twitches/spasms

    My daughter was diagnosed with epilepsy - she's had it since birth. At the moment she's on three different medications to control her seizures. She went from having full tonic-clonic seizures that would last anywhere from 30 secs to 8 mins, she even had a seizure that went for over an hour and only stopped once she was given two forms of anti-seizure drugs in Emergency.

    Since then her seizures have thankfully dramatically reduced and are now only myoclonic seizures (muscle contractions that last only 1 sec at a time). She is almost 4 months old and has started having non-seizure muscle twitches that wake her up at night and prevent her getting a decent amount of sleep during the day. Before she developed these she was sleeping between 6 to 8 hours at night, now she is waking every 4 hours.

    I know it's a long shot but has anyone else, with a bub prone to seizures, experienced this? I presume it is neurological, otherwise even if your bub isn't prone to seizures and this happens!

  2. #2
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    hey
    My DD has a seizure disorder, she is neally now but has had them seince she was a bub, her seizures are now most part controled apart from when sick or having toruble absorbing her meds, But she still gets what you are talking about at night Myclonic Jerks is what the neuro says it used to wake her when he was a bub but she is now used to it, But it can be very frustraing and un settling to watch, Dd is on 4 seizure meds and they upped one of them over at night because of the constant myclonic jerls and night time fits, she is now on 10mg of clobazam over night as well as hr other meds

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    Thanks, I didn't actually expect to get a reply. I knew it had to do with her seizures, I did speak to her neuro about and he said it isn't anything to worry about so I was kind of hoping it would resolve itself. My bub is already on 3 medications and the aim was to remove one, not add one.

    Thank you for that information, when I speak to her neuro at the end of the month I'll ask him about her options!

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    Quote Originally Posted by julesybabey View Post
    Thanks, I didn't actually expect to get a reply. I knew it had to do with her seizures, I did speak to her neuro about and he said it isn't anything to worry about so I was kind of hoping it would resolve itself. My bub is already on 3 medications and the aim was to remove one, not add one.

    Thank you for that information, when I speak to her neuro at the end of the month I'll ask him about her options!
    as long as its not causing problems they dont medicate for myclonic jerks. So hopefuly wont need to add in more meds , see what the neuro says

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    Hi guys, I know it's a year on from this but my 4 month old sounds very similar. The jerks, at their worst, were waking her every hour. I'm wondering where I can talk to other mums of babies with seizures. Do you know of any specific forums or places I could go? I'm finding regular avenues frustrating because so much is irrelevant to our situation. She is currently on clonazepam, carbemazepine and nitrazepam and has just started the ketogenic diet.
    Thanks


 

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