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Thread: Super Upset - Seizures

  1. #1
    sugarsue is offline INCIIDer - A Community Creator
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    Default Super Upset - Seizures

    Today I switched the depakote doseage to 2 sprinkles in am, 1 sprinkle around 4:30 and one around 6:30. She's been on this dose since last Wed or Thurs. so I would not think the switch would do anything but what do I know...

    Tonight we went to Red Robin for the first time. She had three long (10 seconds each maybe) seizures within a 20 minute period. This is a huge amount to see so close together. I felt like it was because of the environment at Red Robin but who knows. The waitress came by to ask us what we wanted and as Sierra was finishing up, Savanna started having a seizure. I waited until she was done to get her order in. I know the waitress thought she must be mentally challenged. She was staring forward with her mouth hanging open and her eyes looking drugged and 1/2 shut. It was awful. Then she had 2 more before our dinner came. Sometimes it takes everything in me to not scoop her up and run to the emergency room but instead to just sit and wait and then act like nothing happened.

    Sierra said she saw 2, one right after the other on the bus, maybe this morning or yesterday, I can't remember. She said Savanna, Savanna.... and then Savanna said Huh? and then went into another one. I very rarely see one right after the other. Savanna says that Sierra is lying, that she does not have seizures at school or on the bus. I know she just does not know. I have Sierra sworn to tell the truth about them. I hope she is.

    Good Gracious Me!

  2. #2
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    Oh Sue, I am so sorry. How terrifying to see all that. How soon can you talk with your doctor? I agree, it seems odd that the change in the dosage would affect her today. I hope you get some answers!

    HUGS!

    Lisa

  3. #3
    pepperlc is offline INCIIDer - A Community Creator
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    I am also very sorry. I would imagine that Sierra is telling the truth if she really can accurately identify them. She has no reason to make it up. It doesn't benefit her in any way to lie.

    I am amazed that they can't find something to help her. Call the doctor first thing in the morning. Did they tell you to take her to the ER ever? Give criteria as to when she should go?

    So it basically took a week at the new dose to see these changes? Strange unless the new dose isn't working and it took her body a week to realize it.

    So many hugs coming your way.
    karen

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    Default I am so sorry, that must be

    terribly scary. I doubt Sierra is lying. In fact, my thought, was thank goodness she has her sister right there to help "track" the seizures. So scary for all of you. I hope you get answers!

    Kathie



    Quote Originally Posted by sugarsue
    Today I switched the depakote doseage to 2 sprinkles in am, 1 sprinkle around 4:30 and one around 6:30. She's been on this dose since last Wed or Thurs. so I would not think the switch would do anything but what do I know...

    Tonight we went to Red Robin for the first time. She had three long (10 seconds each maybe) seizures within a 20 minute period. This is a huge amount to see so close together. I felt like it was because of the environment at Red Robin but who knows. The waitress came by to ask us what we wanted and as Sierra was finishing up, Savanna started having a seizure. I waited until she was done to get her order in. I know the waitress


    thought she must be mentally challenged. She was staring forward with her mouth hanging open and her eyes looking drugged and 1/2 shut. It was awful. Then she had 2 more before our dinner came. Sometimes it takes everything in me to not scoop her up and run to the emergency room but instead to just sit and wait and then act like nothing happened.

    Sierra said she saw 2, one right after the other on the bus, maybe this morning or yesterday, I can't remember. She said Savanna, Savanna.... and then Savanna said Huh? and then went into another one. I very rarely see one right after the other. Savanna says that Sierra is lying, that she does not have seizures at school or on the bus. I know she just does not know. I have Sierra sworn to tell the truth about them. I hope she is.

    Good Gracious Me!

  5. #5
    Laura H1 is offline INCIIDer - A Community Creator
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    aww, Susan...this does sound upsetting...I'm so sorry...thinking of you tonight and hoping somehow you can get some answers...

    crapola, just forgot who posted about getting some criteria from the neurologist...i.e., when do you need to act fast?

    many hugs coming your way...
    Laura
    p.s. is the dose lower or higher than before, and perhaps it has taken her body this long to figure out she's on a different dose...

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    angeleena is offline INCIIDer - A Community Creator
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    Susan,
    I cannot imagine how it must have felt in that restaurant. I am so sorry that you are hving to deal with this. I sure hope that the docs can come up with some answers for you soon.

    I am sending positive thoughts to you and your family and i want you to know i have been thinking about you and yours since I read your post a while ago.

    Sending good vibes.....


    Angi

  7. #7
    sugarsue is offline INCIIDer - A Community Creator
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    Default Re: criteria and doseage

    Quote Originally Posted by Laura H1
    criteria from the neurologist...i.e., when do you need to act fast?
    p.s. is the dose lower or higher than before, and perhaps it has taken her body this long to figure out she's on a different dose...
    The neurologist says they are not dangerous but I am going to ask today, I mean what happens if I see one that lasts 30 seconds. That would totally freak me out. 10 seconds seems so long when you are sitting there watching it. I am going to ask them about this today.

    Regarding the dose, she's on the same dose for the last week which was 4 pills instead of 3. I just changed when she was getting the pills during the day which the neuro said was OK to do. I just don't know what to make of it. I'm glad it's almost the weekend so I can keep an eye on her.

    Thanks you guys SO MUCH for your posts. I'm still pretty upset today.

    Susan

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    NancyR is offline INCIIDer - A Community Creator
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    Default Hugs Susan! You must be one calm person, it is

    so hard to deal with this! I know what you mean about that feeling to run with the child vs letting the seizure run its course.

    I do believe Sierra can recognize the seizures. My brother had seizures when we were growing up and I could recognize them too!

    Wow! I hope her body adjusts to the meds quickly, and they continue to keep her in check.

    Many, Many hugs to you!!! Nancy

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    jeninnc is offline INCIIDer - A Community Creator
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    I am really sorry Sue. I so wished this one would work for you. I hope it is the case of finding the right dose. It must be really scary.

    HUGS!

  10. #10
    zoeyz is offline INCIIDer - A Community Creator
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    I am really sorry this is happening I hope there is something to help her. It sounds like a lot of it is trial and error with this kind of thing, which must be so frustrating and scary. (((hugs)))

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