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  1. #1
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    Default Nick Seizure

    Hi everyone,
    Today Nicholas's grandmother came to visit and he hasn't seen her in a few years. So he was really excited! Mostly, it went really well, but suddenly Nicholas began to vomit (retch) and he looked terrible. This happened very suddenly. Then he fell asleep. He reported to me later that he felt he had had a seizure. He was full of apologies and also questioning 'why' it happened. It's very unusual for Nick to have a seizure that is when Nick is awake during the day. His seizures are usually only during sleep. Does anyone have experience with seizures that involve nausea? Thanks all,
    Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Sorry about Nick's seizure. Tyler gags, retches and try's to vomit when his seizures get too intense (he's had a fundo, but can still vomit with no
    problem). This usually happens at night. Pain brings on the seizures, which makes them worse, Tyler starts his gagging, retching and trying to vomit
    which brings on his breathing difficulties, which causes even more seizures, which starts the cycle all over again. This can go on for an hour or more.
    We use Tylenol with Codeine to try and stop the pain and diazapam to try an control the seizures. It becomes a vicious cycle. Sure hope Nick doesn't
    have any more episodes like that. It is so distressing on everyone.


    Tamie
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    HI Tamie, Thank you for your reply! Nicholas isn't in pain, but that's only because he's got a spinal cord pump plus he's on morphine and a bunch of other meds. So I don't think it's the pain, but I think that excitement and/or anxiety is a trigger for seizures, no doubt about it. It was funny how it came on. It definitely seems like something autonomic nervous system related. Also, with his nightime seizures, sometimes he has huge sweats (no temperature) but soaking through his clothes. Strange.
    How are YOU doing???!!! I send you prayers and a big hug from our family to yours xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Hi Donna.

    I am very sorry to hear about this vomiting.

    The question really is, 'Is the vomiting a seizure, or has the seizure caused the vomiting?"

    Grant sometimes will vomit, although he now does it much less frequently now than he did a year or more ago.

    If Grant goes through a period of instability then he can vomit every few days. If this is a vomiting seizure, or because Grant is unstable with seizures, he vomits, we really don't know.

    Sorry that I can't be much more help.

    Best wishes as always of course and manly handshakes to Nicholas.

    Seeya,

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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    Tyler also gets the sweats (day or night). Sometimes he is just drenched with sweat. We've alway figured he just seizes so hard he sweats with the shear effort of
    seizing.
    I am doing much better. Still have some erratic heart beats and go in on Tuesday to get set up with a heart monitor halter. My echocardiogram came out showing a
    normal heart function, but the missed and extra beats are a mystery. Still having dizzy spells as well, which means I still can't drive. Very frustrating. They say I may never get feeling back in my right leg or left hand (though the nerves can take up to a year to heal, so maybe??). All in all, I really can't complain. I am alive.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    This reminds me of something I saw about an 8 year old with seizures on TV. It was on TLC. She would have seizures at night that would make her vomit and the vomiting was the seizure itself. After she started having the seizures they found she had an autonomic nervous system disorder that caused the seizures.
    Last edited by funnylegs4; 09-14-2011 at 05:39 PM.

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    Hi Everyone, thank you for your thoughts, ideas and support!!! Wow, Nick gets night sweats like Tyler too. I mean not just a bit of sweating, he literally drenches the sheets through the mattress. I have always suspected he has an autonomic disorder of some kind. Our doctor said he would call the best epilepsy specialist in town - there's a long waiting list for new patients though, so we'll wait and see what happens next. In the meantime, his dose of tegretol is high and I don't really want to go any higher on the keppra either because of the poss. of rage sides. Anyway, I'll keep you all posted on how it goes! Thanks again, Donna x
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Donna & Nick))))))

    I've been in absentia for awhile ~ stuff going on with Jon ~ so sorry to read that Nick had a seizure. My boys didn't vomit with seizures, only with twisted bowels and septic UTIs. So, I'm unable to provide any insight there.

    A couple of thoughts ~ would it be possible to do a little blood work up on Nick? When was the last time he had a thorough work up? Complete metabolic panel, including thyroid, glucose, etc. And checking the levels of his seizure meds? Maybe he's too low or too high. I would hesitate to adjust his dosage without that data (but that is me, and how I roll).

    Nick has gone through a lot of changes ~ air travel, leaving one country and moving to another, becoming independent. I think all of this is worth factoring into the potential cause of his seizure, as any change can trigger one, let alone many changes. It's all exciting and different, which can be wonderful but overwhelming in very subtle ways. Even the best changes are a kind of stress for anyone. A wedding, for example: wonderful thing ~ very stressful!

    I'm sure that you already do this, but if Nick can openly express to you all of his feelings about these changes, including apprehension or fear, I think that would be beneficial for him, as well as you. It's far easier to cope with our feelings about major changes, when we explore all sides of the change. Some things we like better than how it was before, some things we aren't comfortable with yet. It's just natural and human to respond to change this way.

    Other changes to ponder might include changes in his diet, ointments/creams/toiletries used for his hygiene, or other environmental aspects of his new residence.

    You may also want to check with Nick's caregivers to ensure that Nick is receiving the proper dosages of his meds at the correct times. Never hurts to double/triple check these things.

    I hope that Nick won't have to wait too long to see the epilepsy specialist, and I pray that he has no more seizures.

    How are you adjusting to the change, Donna?

    Sending healing thoughts ~

    Love & Light,

    Rose

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    Hello dear Rose,
    I am just about to post about Nick's tegretol levels, but wanted to say a personal high and send a cyber hug to you, Jon and Jim. xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  10. #10
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    ((((((Donna))))))

    Thank you for the shout out and the hug! :) Jon and the two old codgers he calls parents are doing fairly well. Our primary concern continues to be Jon's indwelling catheter. Otherwise, he's in good shape, and we give thanks for every day, which is a gift.

    Sending healing prayers for Nick and lots of bolstering prayers for you, dear.

    Love & Light,

    Rose

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