Tag Archives: health

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.

The breaking point

19 Oct

When I was in junior high, I read a book about a girl whose father had a mental breakdown.  I’d never heard of mental breakdowns before and found the topic rather intriguing.  My parents are extremely hardworking people, and I remember asking my dad, “What if you had a mental breakdown?”  I still remember his response clearly, delivered with a dismissive snort: “That’s not my style.”

I don’t think it would be too contentious to say that there are people who really are mentally tougher than others, some who are more prone to panic, some who are more stoic.  I also think that if you put anyone under enough stress for long enough, there will be a breaking point.  But I am thankful that I seem to be cut of pretty sturdy cloth.  Like my dad, I’d rather hope for the best, look for solutions, research, analyze, whatever it takes to get through things.  (Unlike my dad, I’m a lot more likely to actually express my emotions while I’m doing it — but then, I don’t have the burden of a Y chromosome.  Ha!)

Over the last couple of months my standard response to, “How are you?” has become, “I’m hanging in there.”  I can’t lie and say things are great, but at least it’s true that I’m doing what I can.  The standard response to, “You are so strong!” is, “You do what you have to do.”  What else can we do when we have no choice but to live the life we’re given?

Well, my friends, the truth is, I have reached a breaking point.  Maybe not the breaking point, but I can feel my strength ebbing.  The last couple of weeks have been pretty nightmarish (more about this in another post) and I am starting to crack.  I was on the brink of tears all day today.  I am bitter and angry and even resentful of well-meaning remarks, which is totally unfair.  A few days ago I thought wryly that maybe we’re going through this now so that when we finally get to start the keto diet — and we immediately see miraculous results, of course — it will seem easy to deal with by comparison.  But right now, I don’t know how we can possibly go through another month of this.

Fighting the mold monster

16 Oct

Once upon a time, we bought a washer and dryer.  They were front-loaders.  They were stackable.  I was in love.

We just finally got them stacked last week.  While we were in Vancouver, Tim did a laundry room renovation that makes the teeny room seem twice as large as before.  I was ecstatic!  It really is a great thing, but it’s not what this post is about.

I’ve been noticing for a few weeks that the washer has a moldy, mildewy smell in it.  And some of our towels seem to smell that way, too.  Although I never did before (for safety reasons), in the past few weeks, I started leaving the front door of the washer open to let it air out.  And since I can access the machines more easily in our now-spacious laundry room, I gave everything a good wipe earlier this week.

Then I read this post on the Home Ec 101 blog.  I had never ever heard that front-load washing machines are prone to mold growth.  Since it’s apparent that the machine already has a mold problem, I did a search on how to resolve the problem.  It’s scary, but from what I’ve read, it’s not necessarily an easy fix.  Although I’ve been noticing the mold smell only for the past few weeks (and I thought it was because SOMEBODY had left wet loads of laundry in the machine for SEVERAL DAYS, but I’m not saying WHO…) it’s possible that this is a problem that’s been building up for a while.  That scares the crap out of me.  What if this is what’s been causing us to get so many colds.  Or if it has something to do with Jade’s seizures?

I literally found out about this issue just now, so I haven’t actually tried to check out the machine to see where the mold might be yet.  I’ll let you know how the battle goes.  And if you have any tips for me, please let me know.

Vancouver and back

12 Oct

Since my last post, I have been to Vancouver and back again.  The trip was quite a whirlwind.  We found out about two weeks ago that the epileptologist at BC Kids (a pediatric neurologist who specializes in epilepsy) would be able to squeeze us in for a visit this past Friday.  She wanted both Michael and me to be there, since we were going to discuss the possibility of doing the ketogenic diet.  In some ways, it was meant as an orientation for us, and in some ways it was an opportunity for her to assess whether we’d be a good fit for the dramatic lifestyle change that goes along with the diet.

Yukon Health usually will pay for just one parent to travel with a child as a “companion” for medical appointments Outside (i.e. anywhere not in the Yukon).  However, they will cover the cost of both parents travelling if it is deemed medically necessary.  I was on pins and needles waiting to find out whether they would agree that it was medically necessary for us both to be there, and thank goodness they did.

The three of us left on Thursday morning, and so theoretically had a whole day of “free time” in Vancouver.  But we’d been up since about 5 a.m. because Jade had had a series of seizures that required emergency medication.  This was the fourth morning in a row that we had to use her rescue meds, so we were physically and emotionally spent by the time we arrived in Vancouver, got to our lodgings, and had lunch.  It was definitely time for a nap.  We did get to see my sister for supper that night, which was wonderful; the last time I’d seen her was at her wedding in Mexico last year.

Jade’s new neurologist, Dr. Huh, is great.  I arrived at the appointment clutching a notebook filled with little coloured tabs; I had a tonne of questions and I didn’t want to forget any of them.  The doctor chuckled when she saw the notebook and she said she knew she liked us already.  We spent a bit of time talking about the history of Jade’s case and then she spent a bit of time examining her.

I’ve never gotten to see Jade at her previous neurology appointments, so it was fun watching Dr. Huh interacting with Jade, seeing how she used different kinds of toys for her tests.  We already knew that Jade is right-handed, but didn’t realize just how strong her preference is until we watched the doctor doing some of her tests.  When it came to testing for reflexes, she took out her little hammer-thing (wonder what it’s officially called?) and told Jade, “This is my booper!”  Every time she’d hit a spot on Jade’s body, she’d say, “Boop!”  Jade was fascinated, and I was highly amused.  When she looked into Jade’s ears, she said she was looking for puppies in there; tell me you’d keep a straight face at that line.

Jade had a number of seizures while we in Dr. Huh’s office; in fact, Dr. Huh observed more seizures than we did, which was both surprising and a little distressing, given that we think we’ve gotten pretty good at watching for them.  She also observed a slight tremor in Jade’s hands and a slight lack of balance, probably from fatigue and the number of seizures she was having.  (She’d had another series of early-morning seizures, although this time they hadn’t required the rescue meds.  But they really tired her out.)

Based on the last EEG, our recent observations of Jade’s seizures, and her examination that morning, Dr. Huh concluded that Jade’s anti-seizure medications really aren’t working.  Since Jade has now failed three medications (Clobazam, Valproic Acid, and Clonazapam) there’s a less than 10% chance that any other anti-seizure medication will work.  The longer the seizures go uncontrolled, the worse it looks for Jade’s development.  We’ve already had confirmation that she is slightly speech-delayed (though we believe that started even before the seizures; the more seizures she has, the harder it becomes for her to catch up.  Given her age, her type of epilepsy (Myoclonic Astatic Epilepsy, we were told for the first time), and the fact that we’re pretty proactive and organized parents, it seems Jade is an excellent candidate for the ketogenic diet.  We were told that Jade’s type of case is one they want to treat aggressively because right now she functions at a good cognitive level, so she really has something to lose.

BC Kids has a special kitchen for training parents who have a child starting the ketogenic diet.  Besides the doctor, a nutritionist and a nurse are dedicated to the program.  It is such an intensive use of resources, they can only start two kids on the diet every month.  I am really grateful that they told us they can probably fit her in toward at the end of November.  I expect that Nugget will have arrived by then, and although it means I’ll miss a week of my mom’s visit (boo!) as far as we’re all concerned, the sooner Jade can start the diet, the better.

In the meantime, despite the low probability of success, Jade is starting a new drug called Keppra.  This is the anti-seizure drug they usually try first at most US hospitals; we’ll see if it does anything for Jade.  I expect we’ll see at least a short-term improvement; maybe that will tide us over until we can get her started on the diet.

This ‘n’ that

29 Sep

I’ve spent many hours at the computer this weekend, but almost none of them on my blog, so here’s a little update on life at the mo’.

Jade’s still having around 20 seizures a day, but her mood has been improving.  For the past week or two, she’d been behaving manically, swinging from happy to tantrum and back at the drop of a hat.  Very frustrating to live with.  We think it might be the Clonazepam and the neurologist suggested cutting it back again.  We’re also upping the valproic acid again.  The latest blood tests showed the drug has finally reached the “therapeutic range”, although it’s still at the low end.  We’re keeping our fingers crossed for improvements in the next little while.

We found out at the end of last week that our referral with the epilepsy specialist, Dr. Hah, will happen soon!  The appointment is set for next Friday and will be with both her and Dr. Demos.  They wanted both Michael and me to be there, since we’ll be discussing a number of things, including a kind of orientation to the ketogenic diet.  Since it takes a big commitment from the family for the diet to work, it’s important that we all be involved.  I was worried that Yukon Health wouldn’t allow both parents to go (normally a child is allowed just one “companion”) but apparently they will cover travel for both parents if it’s “medically necessary”.  The paperwork’s been submitted, so I just hope the evaluating doctor doesn’t think it’s not necessary for both of us to be there.  I’m sure one of the reasons the referral happened relatively quickly is because of Nugget.  By the end of October, I’ll no longer be allowed to fly. I’m so grateful to the BC Children’s Hospital for doing everything they can for us.

In the meantime, my own energy and mood still tends to rise and fall with Jade’s condition.  Leaving work a little earlier than the end of October is looking more and more appealing.  However, I have a couple of commitments that I really need to meet.  I have a report due for my biggest project at the end of this month.  Which would be, uh, tomorrow.  Which was why I spent almost 18 hours at the office this weekend.  However, since I spent the entire time in yoga pants (!) and there were no people distractions I was seriously productive.  (Between that and your encouragement, I believe there will be another pair of office-worthy yoga pants in my near future.  I mean, these ones have to be washed sometime.)  Michael was awesome being pretty much on his own with Jade all weekend.  I missed being with them, but I’m so looking forward to getting this report D-O-N-E.  It’s been a huge source of stress for me.

Michael’s folks were supposed to be visiting this week but they had to cancel because Michael’s Pop was in the ICU in Mississauga, unable to breathe on his own.  His mom has been there for the past week, being with Granny (who has lung cancer and just recently got moved to a care facility) and Pop.  We were so worried about Pop and of course disappointed to be missing a visit, but things started looking up today, with Pop finally coming off the ventilator for the first time in almost two weeks.  He had also been on a feeding tube the whole time and today got to eat “real food” — applesauce — for the first time since going into the ICU.  Apparently he wolfed it down with relish and when Marian observed, “But you don’t like applesauce,” he grinned and said, “I do today!”  So like him.

After the marathon weekend at the office, plus going in today (my usual day off), I’m definitely starting to lose steam.  But things seem to be looking up, so all I need is a good night’s sleep (am I perhaps asking for too much here?) and I’m sure I’ll be good as new.  Speaking of which…

Oh, wait!  Did I fail to mention that we had our first snowfall of the year this morning?


11 Sep

I’m stealing a few minutes on Michael’s computer to let ya’ll know that I haven’t fallen off the face of the planet.  I’ve been trying to de-Vista my computer and conceded that I’d been licked, so now a friend is looking at it for me, but it’s proving stubborn, so I won’t have a computer for a few days yet, I’m guessing.  Michael’s been working really hard on a report he had to get done quickly, so I’ve only been able to snatch 5 minutes in the last two days to see if any important e-mails had come in.  It’s so disconcerting to be disconnected like this!

Jade turned out to be pretty darned sick.  She was completely lethargic for almost three days — very disturbing behaviour in a toddler — and had sores all over her tongue that made her cry anytime anything went near her mouth.  She ate less on the whole of Monday than she usually eats at a meal.  She was much better yesterday, but still didn’t want to eat anything.  Except for Cheerios and milk.  And more Cheerios and more milk.  And yet ore Cheerios and milk.  Yep, that was breakfast, lunch, and supper.

I stayed home with her on yesterday and hoped she’d be back in daycare by today.  I have so much work to do at the office.  Unfortunately, she’s still resisting taking her medicine (this was never a problem before, but while she was sick we had to physically restrain her and force-feed them to her, although she’s offering slightly less resistance now…).  Also, I developed a sore throat, fever, and headache.  So even though I got up early and showered and had breakfast this morning, I didn’t end up going to work today.  Just the effort of getting ready for work sent me back to bed.  Thank goodness Jade still naps in the afternoons!  It almost makes up for her waking up every hour at night these last few nights.

Hoping to be back online sometime this weekend…

Reality is a crutch for people who can’t handle drugs

30 Jul

I saw this quote in a bathroom stall once, and it made me chuckle even though I’m so not a drug user of any kind.  Okay, I like my coffee on occasion, and I admit to craving beer and rum during this pregnancy (to which I say, “WTF?” because I don’t even like beer).  But somehow I doubt that’s what Lily Tomlin had in mind when she said this.

Reality these days is that Jade has to take a whole lotta drugs multiple times a day, and today was her first day on Clonazepam.  The day did not start off well. 

I got up at 4:30 when she gasped a couple of times, but fortunately it didn’t turn into a full-blown seizure.  Still, I decided it would be better to bring her into bed with us, so we witnessed her little seizures at 6:16, 7:00, and 7:20, making for a fitful night.  While I was getting her diaper changed in the morning she went into a full tonic clonic seizure that lasted two and a half minutes and caused her to pee all over me.  I bawled as I rocked her for the 10 or 15 minutes it took for her to recover.  I told her she wasn’t allowed to have another bad seizure day.  Then we went upstairs to have breakfast and I gave her the sedative.  I had decided to stay home with her, since we had no idea how she would react to the new drug, and I didn’t feel comfortable putting that responsibility on the daycare.

I didn’t witness a single seizure all day.

It’s too early to tell if this is really how the drug is going to work, or if this just happened to be a good day.  There are still a number of potential side effects and longer-term effects to think about.  But, damn, we needed to have a good day. 

Thank.  God.