15 May

I was hoping to be able to post that Jade has been absolutely seizure-free since we started this great streak.  I can’t do that, but I can tell you that she’s still 99.something% seizure-free!  We’ve observed a few body jerks now and then, either while going to sleep or while asleep.  It’s possible that she’s been having sleep seizures all along and that we simply didn’t observe them before.  But I don’t think so.

The jerks have been a little more frequent lately.  It’s still just one or two (or, this morning, three) but I’m afraid that if we simply accept this as okay, we’ll be going back downhill again.  It’s hard to know what the problem is because up to now, the answer has been “calorie increase” pretty every time, but this time I’m not so sure.  I won’t bore you with the medical details about why I’m not sure, but I’m just not sure.

One of the suggestions we got from the neurologist when Jade had to go to Vancouver in March was to fast her periodically, perhaps once every month or two, just for a day.  Because of the occasional jerks we’ve been seeing, Michael and I discussed doing a one-day fast.  After feeling three big full-body jerks around 6 a.m., I decided that today was the day.

And can I just say that Jade is such a trooper.

These days, Jade usually gets out of bed asking for breakfast… but not today.  I decided not to bring up the subject of food.  I did tell her that today was going to be a special day because we were going to do a fast.  She said, “Okay!” and even though I’m pretty sure she doesn’t know what a “fast” is, I felt that I’d done something to prepare her for what I figured would be a difficult day. 

Luckily we never had to have any eating or feeding in front of her.  She’d slept in whereas Halia had woken up, so I fed the baby her cereal and inhaled my own breakfast before waking Jade up for her morning pill.  Then we managed to keep busy with extended playtime in the shower and visiting with friends at the park, and Amanda came back home to feed Halia lunch while we were still out.  In the afternoon, after a failed nap attempt, we visited greenhouses.  Jade never complained about being hungry.  She asked for food just once in the afternoon but was pretty easily distracted by the idea of going out.

You should have seen her wolf down her dinner, though.  And her bedtime snack.  She was hungry.

I am so proud of her.

12 Responses to “Fast”

  1. Kara May 16, 2009 at 12:00 am #

    What a trooper! Hope it helps.

  2. allmycke May 16, 2009 at 2:04 am #

    Isn’t it amazing how children sometimes seem to understand far more than what we give them credit for?
    Like Kara, I hope the fasting helps.

  3. Jamie May 16, 2009 at 4:12 am #

    WOW! As the parent of a 3 year old I don’t know how you or Jade did it! Derek seems to be constantly asking for food! I would have been filled with anxiety about fasting, good for you and Jade for getting through it! My fingers are crossed that this sets everything straight again.

  4. Marian May 16, 2009 at 4:18 am #

    Jade isn’t the only trooper in that house……but she certainly is an amazing little girl. Hugs again to everyone.

  5. Tine May 16, 2009 at 5:23 am #

    Glad to hear it went so well (that’s amazing !!) – &, of course, I, too, hope it works !!

    ♥ ♥ ♥

  6. Adventures In Babywearing May 16, 2009 at 10:20 am #

    ohhh, you are such a trooper, too!


  7. Barbara May 16, 2009 at 6:51 pm #

    I am so pleased this is going well for – your whole family!

  8. Sue May 16, 2009 at 8:22 pm #

    Hope the “jerks” go away. Dermot’s jerks were confirmed to be tonic seizures. I know you probably don’t want to hear that, but I ignored them for too long. It’s a journey right? I think as the kids grow and their brains develop the seizures evolve or hopefully go away at somepoint…Good luck to you…

    • fawnahareo May 16, 2009 at 10:01 pm #

      OMG Suzanne, I didn’t even think of that. I know that Michael was reading that with Jade’s type of epilepsy, developing tonic seizures is a really bad sign. Ugh, ugh, ugh. More research needed. Thanks for mentioning it. I am no officially freaked out, but it’s definitely better to try to be proactive.

  9. Jenny May 17, 2009 at 3:06 am #

    With the myoclonics it is common for them to happen around their sleep cycles. Naomi has had jerks in her sleep and before going to sleep while hooked up to video EEG but they weren’t tonic seizures. Still just generalized myoclonic seizures

  10. Captain Momma May 18, 2009 at 6:49 am #

    Bless her little heart and her perseverence 🙂 And yours too. Will be putting this to prayer for sure!

    Aren’t the patterns great??? What size is Jade? 3? Just in case I get a spurt of energy 😉


  11. Andrea May 19, 2009 at 8:25 am #

    Good girl!

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