Wednesday, April 14, 2010

Like a Trip to the Dentist

Now see, this is why it always makes me nervous to do glowing blog entries like the last one.

This morning I was moving the blanket off of Collin to put something in his feeding tube when he startled out of his sleep and had his first tonic-clonic (grand mal) seizure.

At first, I was too shocked to be scared and couldn't figure out what the heck was going on, but then I yelled for Kyle and picked Collin up and tried to pay attention to what was going on so I could report it later if I needed to and so we could decide what to do if it didn't stop. Luckily, the jerking subsided in under a minute. I had to rush out to the dentist at that point and he had another one while I was gone, so now he is pretty out of it.

Let me just take a moment here to comment on how ridiculous and excruciating (not physically) my time at the dentist was this morning. I cannot emphasize enough how great it would be to have a box you can check when signing in that says "I prefer not to make conversation". I am never good at or fond of this part of the dentist visit and this morning I think I would have preferred a filling to it. Going on very little sleep and reeling from the morning's development, the last thing I wanted to do was make small talk; but the hygienist, bless her heart, insisted. At one point, after pushing and pushing about what Collin is doing now that he's one, she must have seen a note she wrote to herself the last time I was in, because she stopped suddenly and asked, "Now, is your son special needs?" I blinked a couple of times and said, "He has them." "Has what?" "Special needs." "Oh! So is he going to walk?" Slow blink. "We don't know." "So, you're just going to have to wait and see?" "I guess so." And I was there for an hour.

So ANYWAY. Now comes the fun part when we try to decide what to do. This usually starts with trying to figure out what might have caused the seizures in the first place. Could it be that we started giving him his oil a new way last night? Could it be that his Keppra wean is over? Could it be something completely different that we have no way of discovering and only coincidentally happened this morning? Yes, yes, and yes. You can see why determining a course of action is so maddening. How do you know what to do when you have no idea what's going on? You don't know. You never know anything.

So the plan (for now) is to hold tight for a day and see what happens. If it's something that will work itself out, we don't want to jump the gun with meds, and since the seizures aren't too long at this point (although any seizure is too long, don't get me wrong) we don't feel incredibly pressured to do something different right away. Plus, we're still in the middle of tweaking his ketogenic diet and will hopefully be adding branched chain amino acids by the end of the week (another post on that later). Luckily, we've gotten good at laying low and plan on doing just that at least for today.

8 comments:

  1. Man, does anybody like talking to the dental hygenist? Somebody should tell them to stop trying. Their hands are in our mouth for goodness sake. You guys are doing an excellent job of weighing your options and making the best decisions for your family.

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  2. I know you added the part about him walking for effect because I just KNOW she didn't really say that. Either way don't worry about a box. Next time write it right there on the form. Seriously. "Rough morning. Don't feel like talking." It's worth a try.

    As far as the seizures, that sucks. A lot.

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  3. You two have a lot to think about today, but it sounds like you've gotten started with some good sound reasoning.

    In regards to the dentist's office, it has always creeped me out that they take notes on conversation points after a visit. i don't expect them to remember things about my life if i only visit every 6 months, so it always catches me off-guard when they pull out details I forgot I ever talked to them about. Someone should talk to the licensing board.

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  4. Our psychic umbilical cord is resonating, Annie. Remember, how last Sunday I posted about my Grateful Morning? Well, later that day Bertrand started seizing badly again (the EEG yesterday didn't help) and he hasn't stopped since. WTF? Likewise, we haven't changed ANYTHING! But, I know that with our boys any slightest little change is like the butterfly that flapped it's wings--it can take weeks to see the ramifications and they can be severe. Could it be the 4:1? the Keppra decrease? the BCAAs? hydration? something else? Maddening indeed! I hope Collin's interlude with TCs is brief! I'll keep him in my thoughts! Love on him for me. :)

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  5. Sorry about the bad day. As soon as someone asks about Kinsley I say "she's doing great... she hasn't been hospitalized in x months or weeks" That usually kills any further conversation regarding Kinsley. Unfortunately, when it doesn't kill the conversation then I get "don't you have an older child?... is she normal?" You are a great mom... keep up the great work! Hugs!!!

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  6. Annie, you know how to make all your experiences come alive when you write. I could totally see the dental hygenist saying all of these things that you wrote and picture you blinking...i' can't imagine the rough morning that you had....i'm sure you just wanted to say, "Can we please just take care of my teeth and that's it....we don't have to talk". That's what I wanted to say on your behalf.
    Thanks for continuing to share about Collin. I don't see you, Kyle or Collin at all anymore, but it doesn't mean I don't care about you or pray for you. I love you guys!!!

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  7. Sounds like a plan for seizure management. It is so good that you and Kyle retain your level headedness about handling these things.

    Thanks for the updates. You are in my prayers every day. God knows your needs even when I don't.

    As for the hygienist - I don't even know what to say about that.

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  8. Just jumped over from Bertrand's blog to read your blog. You went through the ringer today! I remember our first son's tonic clonic. I will NEVER forget it even though I wish I could. As for the hygenist....... Sometimes I felt like just wearing a sign that said "If you're just looking for small talk...... don't talk to me."
    Some days are soooo much more painful than others. Lastly, I wanted to mention that I think you are absolutely right not to make too many tweeks to the Diet all at once. One-at-a-time for sure. But, for future thought, the Diet can cause anti-epiletic meds to have increased affects. Which can mean more seizures in some children. Just a thought... Hang in there. It's super complicated but you can do it!
    Cathy
    Noah's Mom
    www.ketokid.blogspot.com

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