Jade rides again

29 Jul

I’m not really sure how to start this post. 

There’s the “bright side” approach:  Well, we don’t have to worry about Jade having Parkinson’s, nerve pain, or restless legs syndrome… 

Or there’s the “jolly” approach: Wow, Jade got to have her sixth ambulance ride today!

I suppose there’s always the matter-of-fact approach: Jade was having back-to-back seizures today, for a couple of hours in the morning (the daycare called to let us know and we decided to take her home) and then again in the afternoon.  After calling the BC Children’s hospital, we were advised to administer the emergency Valium (our last ampule) and call for an ambulance.

It doesn’t sound nearly as fun that way, though, does it?

Jade and Michael rode down to the hospital together again while I packed things up in case they would be there overnight.  I chastised myself as I did so because after Friday’s chaos, I decided it would be a good plan to have overnight bags packed so they’d be ready to go at a moment’s notice.  I just never got around to actually putting that plan into action, so here I was again scrambling to remember everything.

This time we saw Dr. Tadepalli at Emergency.  (Perhaps Jade is trying to meet every Emergency doctor there is.  If that’s the plan, then this trip was a waste of time, since we’ve met Dr. Tadepalli before — he’s the one who told us a year and a half ago, gently and empathetically, that Michael’s visiting Granny hadn’t suffered a stroke, but had a brain tumour.)  Dr. Tadepalli managed to become familiar with Jade’s medical history in a very short period of time — Michael said he already knew all about her when he went into the room to see them.

After Friday’s major seizure, the neurologists in BC had recommended that any further big seizure activity would warrant starting Jade on a sedative once a day (Clonazepam, in her case, which is also used to treat the other conditions I mentioned at the top of the post).  Dr. Tadepalli felt that this would be the right course of action to follow now, especially since we observed that the Valium on Friday suppressed her seizure activity for the rest of the day.  We’ll also be getting Jade’s blood tested again for drug levels in the next few days.

We have misgivings about giving her such an addictive substance, but today was such a bad day for Jade… I’m not sure we can survive too many like it.  There may be alternative treatments (like the ketogenic diet, for example) but they’re also hard to live with.  I have too many questions and thoughts in my head right now, and it’s past my bedtime, so I will wrap up.

I know this place used to be a lot more fun.  I had all sorts of fun things to tell you about, too, like the music camp classes I’ve taken so far, and our first pre-natal visit with Heather the midwife, and Michael hearing Nugget’s heartbeat when he put his ear to my belly.  There’s good stuff coming, I promise!

But for now, the really good stuff is a good night’s sleep.  Hope you’re getting it, wherever you are.

9 Responses to “Jade rides again”

  1. Trudie July 30, 2008 at 1:06 am #

    Hope you managed to get a good nights sleep, despite everything.
    I keep checking to see if you and your family can get things “righted up” and even if that diet seems to be pretty tough, maybe that’s soemthing to try. I’m not about to give you advise – just want you to know I care. So much.

  2. kara July 30, 2008 at 4:36 am #

    Do you think you will be going down to Vancouver with her soon again? Thanks for posting updates- we think of you guys often.

  3. Lindsay July 30, 2008 at 7:48 am #

    I don’t even know what to say. We’re thinking of you all and wishing you all well. Love you!

  4. Meandering Michael July 30, 2008 at 9:50 am #

    I put my ear on Fawn’s belly last night and heard the baby’s heart beat!!! 😀 😀 😀

  5. emuleman July 30, 2008 at 10:52 am #

    Hope you got your good night of sleep that you needed.

    My son has epilepsy, and began having seizures several days after getting home from the hospital. He is on medication and we have been able to keep the seizures under control.

    It is always a challenge when you have a child that has special needs.

    My family’s thoughts and prayers go out to you and your family.

  6. MommyTime July 30, 2008 at 5:52 pm #

    Best of luck with the new medicines. I have heard GREAT things about that diet (in terms of it working; though I think it’s not always easy to stick to), so it might be worth trying. (((hugs)))

  7. Téa :) July 30, 2008 at 9:20 pm #

    I wish you luck! Get better, and good luck!


  8. elvis July 31, 2008 at 1:10 am #

    yeah….i wish u great luck too. Keep praying and never stop believing….

  9. shannon maccuaig August 1, 2008 at 10:08 am #

    i’ve never heard of that diet (but i read the link), however, i’ve been reading a lot about add and autism lately, and those conditions have diets that are usually found to improve the child dramatically, if not “cure” them, as far as the parents are concerned! there seem to be 2 responses to the diet: 1) “sounds too hard to try: all my kid eats is dairy and wheat, so how could i remove those things?” or 2) “the diet is challenging at times, but it saved our family’s life. sometimes when we slip on the diet, our child regresses and we are reminded all over again how much better all of our lives are when we stick to the diet.” this is just what i’ve read, though for #1 i know several women who have said this to me. its hard to judge them for not trying, because you don’t know what its like to walk in their shoes. i can’t imagine going through what you are right now, and being pregnant and working on top of it all!! once you find the right combination of drugs to help jade and you get back to ‘normal’ life for a while, perhaps you will try the diet to see both how it works for her and to see if you can handle keeping her on it.

    i am praying for you all; lots of love and hugs!

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