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May 08, 2008


I totally feel for you, we went through the same thing. My son had casually mentioned to me a few times that "sometimes my body turns off." He is such an imaginitive child that i paid little attention until months later he "turned off" in a pool we were all swimming in and nearly drowned. He had breakthrough seizures for a while until we got him on the right meds and dosing. I hope all goes well with your daughter. Good luck

Wow. You really get across how horrifying her seizures are to watch and just how tough and un-traumatized she is by them. Is she always that calm? And is it normal, is it okay to have this level of seizure, or is the medication supposed to suppress it?

Hugs to all.

In a pool, Sandy? Jesus. That is the scariest thing I've read in years. I'm glad I didn't read your comment until this morning, because I wouldn't have slept a wink last night otherwise.

And I would have somehow found your phone number and I would have made you stay up with me.

Have I told you and Sharon lately that you are my parenting heroes? And don't get me started on how much I love me some Kathryn Rose. Big hugs to all of you....


Clapped my hand over my mouth. The (? adjective? can't even conjure one?) the horror of the moment is equalled only by your capacity to render it in words, for the benefit of those of us who haven't yet witnessed such a thing.

Thank you, for helping all of us who read this either (a) know something we should, for empathy/compassion's sake, or (b) feel that much less alone in our already knowing it.

Absolutely heartwrenching. How would you know until you witnessed it?

I have never commented before, only lurking to read your brilliant writing. I concur that this post was the most heart-wrenching, scary thing I've ever read. I am sobbing right now for your dear Kathryn. What a beautiful, strong young lady you have been blessed with! I will say a prayer for her.

oh poor the parents. Hope things level out soon. I will be listening very carefully to all those funky kid sayings from now on. Hugs for all of you.

Wow. I totally didn't see that coming. How terrifying for the both of you. I hope you get some answers.

A beautiful post about a scary thing. Poor sweet girl, so tough.

I read the first line and knew what was coming. I hate seizures and I'm so sorry you had to join this club.
Silver lining: my 17 yr old can't drink. It speeds up his metabolism and depletes the medications in his system. If he were to drink, he's guaranteed a seizure the next day. Just a little something to look forward to in her teen years.

I had childhood epilepsy and the seizures scared me at first. But then I got used to it and found out that my seizures definitely freaked out other people more than it freaked out me.

As an aside, I was more prone to get seizures when I was tired. Her restless sleep might be something that contributes(?). I think it would be worth discussing with her neurologist.

I'm sorry she's having break through seizures and hope a quick meds adjustment will turn her mouth back on full time. I agree with childsplayx2 though, the restless sleep is worth discussing with her doc. - Does she sleep like that all night through, or just in the early morning hours?

At the risk of sounding completely lame- the only experience I have witnessing seizures was our family dog. Knowing how helpless and frightened we felt over a DOG convulsing, I can only imagine the terror that rips through your heart as a parent. God, what you must feel like.

What a little trooper that Kathryn is though. I'm in awe of her adaptability.

that was terrifying...my heart rate is still up in the 300's...and she's not my kid. I couldn't even imagine how scared and how long that 15 seconds seemed. She is a brave brave girl. And to think it happens with some regularity when she wakes up!
Sending good vibes that the neurologists are able to get the seizures under better control right away!

That was difficult to read, I can't imagine how hard it was to experience first hand. I'm thinking of you & The Mom, keep us posted when you can.

God bless her.

It sounds to me, Brian, like you're doing just fine.

You're respecting her understanding of what happens to her and not making a big deal of things - any epileptic's dream parent and believe me, I know!

As Kathryn grows she's going to need an extra ration of ambition and an extra ration of assertiveness because the ignorance and the wish to tidy away into corners the people who are different are still out there. The ignorant include not a few doctors.

Kathryn seems pretty bright - just bring her up as articulate as you are and, when the time comes, encourage her to fight her own battles and follow her own dreams.

My daughter has had epilepsy since she was a month of age, she's getting ready to turn six now. The earthquake explanation was a great way to describe a seizure.


That is so scary. It's amazing to me that kids do not get as freaked out as we do by things like these. I'm sorry about this! But at the same time I'm glad you witnessed it, because you at least now you know - "my mouth falls asleep" would never have indicated to me that she was having seizures!! As scary as it is, it's scarier to think "what if I hadn't been there?" I think.

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