Counting Seizures Again

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7 Responses

  1. No, you’re still Super Mom. It’s just that watching your child have seizures will steal any parent’s sweetness–how could it not? We counted our son’s seizures–up to 100 every day–for four years, so I truly feel your pain. You just want the nightmare to be over, and for your boy to be at peace. Keep fighting for the best treatment for him; continue to be flexible and open-minded and take a zero-tolerance approach to those Big Bad Things. Only zero seizures is really OK. You can do it. We’ll help you however we can. XO

  2. Denice says:

    I know another parent going through that right now. They spent the weekend at Dartmouth-Hitchcock trying to control their daughter’s seizures. I’m so sorry you are going through this….

  3. I was the child that had seizures. Now I am the mom trying not to seize. I hope that Aidan’s seizures go away and leave you in peace! I am sorry the he has to be pestered by these. I am sorry you have to watch. Whenever I read about what the caretaker has to see it breaks my heart. I wish you all the best.
    You are a Super Mom. You love your son and do the best job possible to care for him. Fear, anger, concern….these are all normal and expected when you watch a child have any problem let alone a seizure. I hope you all find the peace soon.

    Tara

  4. Judy March says:

    Heather, every post I learn so much from you. I can only imagine how difficult it is to pay enough attention to the seizures but not so much that they consume you. You are doing a great job. Judy (Meredyth’s sister!)

  5. danielle says:

    I’m sure you’ve found Seizure Tracker already?

    Trevy had an absence seizure at today’s doctors appointment. It happened while she was testing him. He just stared away for about 10 seconds. Entirely unresponsive. And when he was back he was very confused. But he doesn’t have the ability to articulate that. We only knew because he had been doing so well with the testing and the suddenly nothing followed by wrong answers followed by back to baseline and answering again.

    10 seconds. That was it.

    A little blip in his brain.

    I’ve seen seizures. By the hundreds. In a single day. Multiply that by years… You’d think my heart would be calloused by now. Or at least…I would think that.

    But you know what I did? I cried. Right there in front of the doctor. Who I’m pretty sure misted up too. Maybe we were both PMSing? I’m crying now even. And it feels silly…because after the seizures he’s lived through a little staring seems so small. And yet…SO big.

    And so flows the life of a Seizure Mommy…

    …danielle

  6. Thank you everyone for your encouragement. It means so much to me.
    Tara – Thank you for sharing such a unique perspective. I really appreciate hearing from the “other side.” I’m loving your blog.
    Danielle – Such a heavy heart I have for you right now. It really is a roller coast and how crazy is it that we’re such fighters one moment only to crumble the next. I’m so with you on this journey.

  7. Kristen Robie says:

    So glad that you have gotten his seizures to the point where he is safe eating. I too understand watching seizures (up to 100 a day at our highest) and am constantly second guessing whether or not she is still having some. Now I can’t BELIEVE how the MD’s in Maine let K seize all day every day for months while eating. You ARE Super Mom.

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