Finding Jade

19 Oct

Can anyone tell me where my daughter has gone?

For two weeks now, Jade had been waking early in the morning with clusters of seizures we’ve had to break by using emergency medication.  Up until last week, that was Valium.  But that drug has to be administered rectally (not fun for any of us, least of all Jade) and we’d been noticing that it was becoming less effective.  It used to be that once administered, she’d go for a whole day with no seizures at all, since the Valium was still in her system.  Now it still seems to stop the clusters, but she continues to have seizures.  All day long.

While we were in Vancouver, we asked about an alternative and Dr. Huh gave us a prescription for Midazolam.  That’s the same drug they tried to use for Jade’s first spinal tap, the one that didn’t sedate her but made her loopy, instead.  The good thing is it can be given orally, so we’ve tried it a few times.  Who cares if it makes her loopy if it stops the seizures, right?  Since we’ve gotten home, she’s had the Midazolam about five times, including twice today, the first time we’ve ever used emergency medication twice in a day.  In fact, she’s supposed to be sleeping right now, but she’s so wired from the Midazolam that she’s upstairs with Michael, who is trying to feed her since she’s hardly eaten all day.

This whole cycle scares the crap out of me.  There’s a very real and very scary chance that she could suffer brain damage if we let her seizures go on for too long.  That fear tortures me.  But the more we use the emergency meds, the less effective they are.  We have a two-year-old whose body is already addicted to drugs.

For the past few days, it feels like Jade has been disappearing.  She spends a lot of time tired and emotional and asking either for a bottle of warm milk (she has gone through 8 litres this past week!) or asking to sleep. When she tries to sleep, she has seizures that wake her up.  Sometimes she seems to be in a fog (Michael describes it as being “drunk”) and other times she just collapses on us and cries and can’t verbalize what she needs or wants, as if she’s forgotten how to talk.

When she’s actually alert, she’s been getting into everything and testing us, like pulling Crook’s tail repeatly after being told not to.  Granted, that could be her being a toddler, but to me, it’s just not like the child I know she is.  I can’t explain it, but it’s just not her.

Every once in a while, we get a glimpse of her real personality, and it’s like a burst of sunshine in cloudy weather.  I think, “Hey, look, there’s Jade!” and I wish I knew how I could keep her from slipping away again.

15 Responses to “Finding Jade”

  1. Mr Lady October 19, 2008 at 8:46 pm #

    I just wish there was soemthing more I could do that sympathize! I am so sorry for you, and for your daughter. God, I hope this gets fixed, and fast.

  2. Jamie October 20, 2008 at 7:20 am #

    Hi Fawn,
    As far as the testing you goes, both my kids do that too when they are either feeling sick or stressed. We are in the midst of a move right now and Caity has been impossible, it doesn’t matter what we tell her, she does what she wants. It’s frustrating because even though I know why she is behaving badly it doesn’t make it okay. So many people will tell me “oh, she’s stressed about the move” or “it’s just a stage”, but neither of those reasons make it okay to run away from us in a big city. I have no solutions, I can just sympatize.

    On another note, have you consulted a naturopath? I know many people that treat major illnesses with both western medicine and naturopathic. If the drugs arn’t working the way they should maybe there are other options. My aunt lives in Vancouver and sees one for a lifelong illness, if you talk to my brother he might be able to get the contact info for you for the next time you are there.


  3. IndyComp0T1 October 20, 2008 at 7:21 am #

    It breaks my heart to read your accounts of Jade’s epilepsy. I wish there was something I could say or do to make you feel better. If you ever need someone to talk to, feel free to drop me a line.

  4. Lindsay October 20, 2008 at 10:36 am #

    I’m so sorry you all have to go through this. It’s not fair. She’s just a baby still. I’m afraid I have no pick me up encouraging words. Just know that I’m crying beside you. And hoping for a cure for Jade’s seizures. Why are they making you wait to start the diet if there is so much risk involved in waiting? Is it a space issue? Love you and we are always here for you, for anything you need.

    To answer your question, yes, it was a space issue. We were happy with it because the end-of-November timing seemed to work well with my pregnancy, too. But since Jade’s condition has deteriorated so much, we are so grateful that the neurology team is so responsive and is getting her in right away. I don’t know if they bumped someone or just decided to make an extra space (something they rarely do, but have done) but whatever it is, I’ll take it.

  5. Captain Momma October 20, 2008 at 1:31 pm #

    I can’t begin to understand how much pain you must be going through and all right before the birth of another tiny miracle.

    I can understand the breaking point and its not fun.

    Will be praying for you all,


  6. Simply Shannon October 20, 2008 at 2:39 pm #

    Oh Fawn. I’m so sorry that Jade is having such a rough patch. I hope that the doctors find an answer that works for her soon.
    Big hugs to you and yours

  7. JenL October 20, 2008 at 2:39 pm #

    When Naomi was on the highest dose of Valproic Acid it made her seizures worse. When we started decreasing the Valproic acid, immediately they got better. When she was at the highest leve of topamax, they weren’t as bad as the Valproic Acid but she would cluster as many as 5 times a day then have one single seizure all day long, seemed like one an hour every hour. Lasting only a second. As soon as we started decreasing that med she got better and actually has a personality now! Facial expressions and everything. The Valproic Acid causes cognitive delays, which may be why she seems to be forgetting how to talk. When Naomi came off the Valproic Acid, she looked at things like she got a new set of eyes, pitiful. So don’t let them tell you it’s just her condition worsening, it very well could be the drugs. They say there’s no double blind tests, on the Ketogenic Diet, well, there’s no double blind test on how these meds when mixed together work or worsen.

  8. Eugene October 20, 2008 at 3:59 pm #

    Nice article. Thanks. 🙂 Eugene

  9. Nemmy October 20, 2008 at 5:51 pm #

    Today, I decided to take the pictures of Jade out of my wallet and put them on my wall at work. Looking at them makes me happy, no matter what kind of day I’m having. Thanks for that.

    I wish there was something I could do for you that would have the same effect.

    I’m thinking of you.

  10. Marianne October 20, 2008 at 5:52 pm #

    I’m no expert, but it seems to me that the seizures must surely be tiring both physically and emotionally for Jade (probably just bringing on more of them, too). When the right medication or the ketogenic diet kick in and the seizures are under control, the real Jade will shine through again.

    As for her wanting bottle of warm milk, it certainly can’t hurt her and if it comforts her it will certainly help.

    I can’t remember if you’ve weaned Jade from breastfeeding, but I seem to recall yes. If so, have you given any thought to going abck to breastfeeding her either at the breast or with expressed milk after your new little one arrives?

    Yes, we’ve been giving her warm milk whenever she asks for it, and have offered it whenever she started getting tired or cranky — it really is very soothing. Which is why she managed to drink 8L in a week! It is one thing that I worry about with her starting the diet, though… I was hoping to take the month before it started to try to break this habit, because we won’t be able to do this on the diet. Every calorie is carefully calculated and divided among fats, carbs, and protein.

    The same goes for breastfeeding. Although she was weaned just after she turned two, in the last month or so, I’ve occasionally let her latch on for comfort, even though there’s no milk left. She only does it for a second, then wants to try the other one, then either moves on to another activity or goes for a soother instead. But I won’t even be able to let her do that once Nugget comes along because it’s impossible to say how much fat or sugar is in my breastmilk at any given time. I don’t think it will be hard to say no, the boobies belong to the baby now, but I do hope it doesn’t cause any resentment.

  11. Kara October 20, 2008 at 6:05 pm #

    We have been thinking about you and your family a lot lately. We cannot even begin to imagine what you are all going through. It is hard to watch you guys go through this and not being able to do anything to help.

  12. bobbinhead October 20, 2008 at 6:59 pm #

    I feel for you situation. I have epilepsy and it’s not easy. Don’t give up. I know you aren’t, but it’s so frustrating to see a loved one have seizures and feel totally helpless. It’s an awful feeling as my husband says. I think it’s worse to witness a seizure than to be the person having the seizure.

    I have complex partial seizures and occasionally a gran mal seizure. In the 11 years I’ve been diagnosed, I’ve never been seizure free. That’s not a bad thing, it just means you find a way to have a better quality of life despite the seizures. I’ve had seizures since birth due to a brain injury. It just was never known until I had a gran mal seizure as an adult.

    It takes time to find a medication(s) that work. Each medication works differently and has different side effects. I’m currently on Lamictal but have been on a lot over the years.

    Seizures are physically exhausting and I can’t imagine what Jade is going through as she’s only two. I’m wiped for hours after one. Children are amazingly resilient though. Let her live as normally as she can even though you can’t stop the seizures.

    Just from reading the past couple of posts, you are doing a great job. Just make sure to take care of yourself as well. You aren’t a bad parent. I promise.

    A great site to check out is The chat room often has parents of children with epilepsy on who can help you out. There are forums as well.


  13. Beanie October 20, 2008 at 8:24 pm #

    Hey, Fawny. Just letting you know that I’m still thinking about and praying for you all (oddly enough, I never thought about how Jade’s condition might affect the animals – now I’m praying for them, too).

    And on a (quasi) non-post related topic: congrats on 1000 blog comments! Of course, I’m referring to something you said on Facebook, but considering the accomplishment, I thought it would be more appropriate to write it here… 🙂

    Thanks, Beanie! And I’m sure if Crook and Nanuq could understand, they’d also appreciate your prayers. Maybe you’re the reason Nanuq’s been so awesome lately. He’s always been jealous of Jade. He’s never been aggressive, but he wants nothing to do with her. Since last week, he’s been trying to snuggle up to her and lets her hug and kiss him. It’s amazing.

    Oh, and thanks for helping to bump my comments up over 1000, too. 😉

  14. Barbara October 21, 2008 at 5:06 pm #

    ditto every good and supportive message.

  15. Asheya October 21, 2008 at 7:47 pm #

    I wish there was something I could do or say to help. You guys are in our hearts. Love.

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