Tag Archives: seizures

Parent-teacher interview

21 Oct

On Thursday afternoon, I took Jade back to school after the school day was done. We sat down with Mme. S for the first parent-teacher interview of the year.

Mme. S told us Jade was a joy to have in the classroom, and a very sweet girl. (We knew that, of course. *ahem*) Unlike many kids, she is able to concentrate on one task for a long time, and it can sometimes be difficult to get her to move on to the next activity of the day. (Yep!) She is not very enthusiastic about gym class. (Yeah . . . I identify with that, although Michael is a bit bewildered.) Did we have any questions?

Jade’s kindergarten teacher had mentioned that it can take Jade some extra time to learn things. So I asked Mme. S if she had any concerns for Jade’s learning in the classroom. She furrowed her brow. No, not at all. And she’s very enthusiastic about reading. (We knew that!) In fact, Jade was placed in one of the more advanced writing groups. (They’re learning to print, so I don’t mean writing novels, or anything.)

I don’t want to brag about Jade. I’m just so happy and so proud of her. After all the pummelling her brain took at the hands of epilepsy, she managed to heal, and she’s thriving. She’s excited to learn, she’s stoic about her special diet, and she’s full of life . . .

I still think she’s a miracle.

The best of times, the worst of times

30 Nov

For four days now, I have skipped putting Halia down for her afternoon nap.  The first two days, she slept for 12 solid hours.  Last night she woke up once at 3 a.m. and wanted some boobing.  Tonight I’m hoping for the 12-hour miracle to repeat itself.

Now if I could just get myself to bed at a reasonable hour, I might become a productive member of society again.

No, really, I am sooo happy with my set of problems right now.  Balance is a hard thing to find.  Working, even half-time, has added a lot to my plate, so that fitting in parenting (single parenting a lot these days, with Michael on the road), keto cooking, music, advocating for Jade, blogging, and sewing are all jostling for attention, and they can’t all win.  Or else they do, but then I’m a cranky miss crankerpants to everyone around me.  Let’s not even talk about stuff like exercise because that just doesn’t happen.

But even though it is exhausting, it is good.  Jade has gone six months seizure-free. (!!!!!) Halia makes magic everywhere she goes.  What more could I ask for?

But! Yes.  It is exhausting.

I was talking to a good friend the other day; she has two grown sons just a little younger than me, and one of them had some very strict food allergies as a young child, and also required some accommodations when he was going to school.  When I talk to her, I feel she understands a lot of what I’m going through now.

“I don’t want to complain,” I said to her.  “I know plenty of people who’ve got it a lot harder than I do.”

“Yes,” she said.  “That may be.  But you can still acknowledge that your life… your situation is a lot harder than most.”

That made me pause.  Thank you, friend. Thank you for letting me feel that I am allowed, at least once in a while, to not like being exhausted.

There are lots of reasons why I don’t want to complain, lots of reasons to feel that it’s ungrateful to do so.  Everyone lives with the same reality of 24 hours, seven days a week, and the miracle of tasks that expand to fill every last square inch of time.

But maybe today I’ll try not to feel ungrateful just because I’m not glad that Jade has to be on a ketogenic diet.  I can be grateful for the miracle it has wrought without liking the daily consequences.

Maybe today I’ll acknowledge that leaving the dishes for tomorrow morning — or even tomorrow night! — might just be the best thing for me to do.

Maybe today I’ll go to bed at a reasonable hour.

(And maybe, just maybe, Halia will sleep through the night.)

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?

Rough weekend

23 Sep

Some days just seem to be calculated to make you feel like a bad parent, don’t they? Jade had a pretty rough weekend; we were back up to 20 to 30 seizures a day and she had a number of injuries that have just added up to make me want to cuddle her in bed all day.

The worst part is not knowing what to attribute the seizures to. She doesn’t seem to be fighting a cold, although she occasionally coughs, but that seems to be permanent with her — we all cough sometimes, right? She did have an increase in Clonazepam (we added a lunchtime dose on Saturday) but don’t know if that’s the link. She’s actually having a hard time getting to sleep, which may mean she’s more tired, which may explain the increased seizures. But we have to look back through her records to see if this happened after the last Clonazepam increases (I seem to remember the opposite) and it could be that whatever it is will only last a week or two. It’s just so hard to know; there are too many variables.

My heart was so heavy when we dropped Jade off at daycare this morning. First I had to wake her up; after a restless night, she was sleeping hard this morning. I’m scared to wake her up these days because I worry that I will cause seizures by interrupting her much-needed sleep. But I had to get to work and Michael had a dentist’s appointment, so I pulled the blanket off her and thank goodness she woke up gently and relatively happy; it’s heartbreaking when she cries to go back to sleep.

As I was getting her dressed, I noticed the right side of her face was swollen up like a chipmunk’s. That would be the result of one of her seizures yesterday evening. She was standing on a short stepladder watching me make supper. I knew she might have a seizure and was ready to catch her. Unfortunately, the one she had was so violent, it slammed her head into the top of the stepladder and then flung her back. She cut up her lip and must have hurt the inside of her cheek as well, judging by today’s appearance. There was blood everywhere as she sobbed her pain and kept seizuring. I cried right along with her, feeling completely inadequate. She’d already fallen down some stairs at the playground in the morning (not the result of a seizure and not a really bad fall, although she did a face-plant that had her mouth and eyes full of sand) and on Saturday she managed to poke a stick into her own face and leave a welt on her cheek. Although I wasn’t really thinking, I could feel that this weekend might just go down as one of the worst parenting weekends in history.

I called the daycare a few minutes ago and Jade does seem to be doing better today; despite her lopsided appearance, they haven’t seen any seizures yet today. I know they were watching her closely because a worker from the Child Development Centre was there to observe Jade (part of the developmental assessment we’re having done). With all the seizures yesterday, we ended up giving her a shot of Valium last night, so even though we continued to see a few seizures in the evening, it might be helping to calm down the seizure activity today.

I’m sorry this is another downer of a post. Ummm, on the bright side, Heather and Leah really did come for two hours on Saturday morning and left in their wake a shiny clean (if still messy) house. It was so relaxing to sit on the kitchen floor to play with Jade and look around and think, “Ahhhh, what a clean floor!” God bless them.

Too good to be true?

13 Sep

The day’s just half an hour from being over.  Jade is asleep.  Michael is in bed.  I should be, too, but I just had to pop on while the computer is free to say that TODAY may have been Jade’s FIRST SEIZURE-FREE DAY since the end of May!

Nothing will happen in the next twenty minutes to change that, right?

(!!!!!!) (inexpressible happiness)

Thoughts on the ketogenic diet – Part II

7 Sep

You can read Part I here.

* * *

You might be wondering why we’re even thinking about all this when it seems Jade is doing so well on her medications. There are a few reasons.

Although I think we’ve been lucky regarding potential side effects of the drugs, lately we have found that she sleeps more. (She’s had two dose increases in the last two weeks.)  She doesn’t seem drugged or sedated when she’s awake, but she sleeps longer and gets tired more easily. And we see more seizures when she’s tired. I know some parents fantasize about drugging their kids to sleep (I know I did!), but sleeping more doesn’t necessarily mean peaceful sleep. There are nights that she is up for an hour or more having repeated seizures, and then she sleeps in late. But we have to give her her medication on time; sometimes she’ll take it in her sleep, sometimes she won’t. The worst are the mornings where I have to get to work; it’s heartbreaking to force her to get dressed and go to daycare when she’s insisting that it’s “nap-time”.

Another reason I’m thinking about the diet is because of the unstudied but anecdotal evidence of kids who have leaped ahead in their development after they started the diet. Jade has an appointment tomorrow to be screened on her language and speech development; we have some concerns that she’s not as far along as she should be at her age, although I’m sure there’s a huge spectrum, so it’s hard to judge. (Perhaps it’s just that all of our friends’ toddlers are particularly precocious?) This may have nothing to do with the epilepsy, as I think she was somewhat late in starting to speak real words, though she babbled happily from early on. Being slow to develop language skills might not be a huge deal if you can catch up evenutally, but it’s still a consideration.  Are there any potential lifetime effects to late speech development?

There are some financial considerations, since the drugs Jade is taking are pretty pricey. Fortunately, this isn’t the main concern, partly because we’re fortunate enough to have health insurance through my work, and also because the Yukon has a fantastic program for people who have chronic illnesses like epilepsy. The government covers the cost of drugs or equipment necessary for treating the illness after the first $250 in a fiscal year. All I can say about that is wow! That’s just more evidence of the fantastic medical care we get here. (Now, if only they’d start paying for midwifery services…)

There are drawbacks to consider, too. There’s a higher chance that Jade could develop kidney stones on the diet: 1 out of 20 kids on the diet get them, versus 1 in several thousand for the general population, but they’re more likely to develop in kids who have other metabolic problems.

Breakthrough seizures are more likely to happen if she gets sick (we already see more seizures when she’s catches a cold now). Since she goes to daycare, how likely is it that she’s not going to get sick? Or is taking her out of daycare altogether going to be necessary? Another scary aspect of illness in “keto kids” is that they tend to have “sour blood”, also known as acidosis, which can cause the child to get even sicker, requiring treatment in hospital.

The diet doesn’t work for everyone. The usual statistics I hear are that diet completely eliminates seizures in about a third of kids, reduces seizures for another third, and has no effect on the last third. Families who don’t see improvements in the first few weeks tend not to see them at all and end up dropping the diet.

Then there are questions about how the diet affects growth, bone density, cholesterol… Epilepsy.com has a good article on the potential side effects of the ketogenic diet here. The good news is that a many of the side effects can be addressed. But then if more drugs are needed, doesn’t that kind of defeat the purpose of trying the diet in the first place?

The big question is, for Jade, would the benefits outweigh the costs?  Also, what would be the downside, besides time and energy (which, goodness knows, is certainly a price to pay) of trying it and dropping it if it doesn’t work?

Anyway, today’s probably not the best day to be ruminating on this, but most of this post was already written.  It’s been a particularly rough day.  From the time we got out of bed, Jade started crying about an “owie dere” in her mouth.  I was sure that one or more of her last four molars were (finally!) coming in.  She ate less all day today than she usually eats at each meal, and spent a lot of the day in our arms, either crying or dopey.  At bedtime today Michael managed to actually look into her mouth and discovered she has sores on her upper palate.  The neurologist on call in BC thinks it’s likely a virus and probably isn’t drug-related, but it’s unsettling.  These days it’s so hard to know what’s caused by the epilepsy and what comes from other factors.

Thoughts on the ketogenic diet – Part I

6 Sep

I started writing on this topic a few days ago and realized that it was much too long for a single post. So here’s the first part of a brain and information dump on the ketogenic diet and how it might fit into our lives. I’ve been using Google Alerts and search engines in an attempt to locate blogs that would give me some insight into other families’ personal experiences with the diet, but the pickins seem slim. Many of the blog I have found are for kids who have far more medical problems than just epilepsy alone (hydrocephalus or Down Syndrome, for example). Do you know any bloggers who have a child like Jade?

* * *

With Jade’s last trip to Vancouver to see the neurologist, we were given a medication schedule to follow for the next nine weeks, with instructions to stop increasing the dose if and when the seizures are completely eliminated. In the meantime, we’re also being referred to a neurologist at BC Kids who deals exclusively with seizure disorders. That particular doctor, Dr. Ha, has experience with the ketogenic diet. Dr. Demos thought that Jade might be a good candidate for it, but said that Dr. Ha is the expert on it; there’s also a possibility that she would recommend other drugs. Unfortunately, the referral process could take a few months.

I’ve been hearing about the ketogenic diet ever since I started researching epilepsy. What I read was encouraging and scary at the same time. My impression was that it can do a lot of good — with altogether miraculous results in some cases — but also that it’s very difficult to maintain. Some of the initial research had me picturing Jade drinking bottles of expensive specially-made oil as her main source of sustenance. Imagine force-feeding a toddler bottles of oil while dining on roast chicken, corn on the cob, and cheese. (Okay, that may not be your idea of a feast, but these are all among Jade’s favourite foods. I picture a rather medieval scene where we’re all at a heavy, ornate table in heavily bejewelled costume, fire roaring in the background, us roaring with laughter, and this poor little raggedly child drinking oil while sitting on the floor and eyeing us hungrily…)

The ketogenic diet: what it is

Wikipedia has a pretty good entry on the topic, and I just added a good article to my “Epilepsy Resources” links, but I’ll try to give you the Cole’s Notes version. The very earliest cure for seizures was fasting, a treatment documented as far back as 400 BC; it is even mentioned in the Bible. The ketogenic diet, which simulates fasting while still giving the body some sustenance for growth, was deveoped in the 20s, but drugs replaced the diet as the treatment of choice in the late 30s.  The diet is starting to become more mainstream again, particularly in cases of difficult-to-control epilepsy.

The exact reason it works is not fully understood, but the basic idea is that the brain is starved of glucose, it’s usual source of energy, and so turns to burning fat. When you’re body is burning fat instead of sugar it’s in a state called ketosis, the same state the Atkins diet aims for. For some reason, this state can sometimes help control seizures.

In order to work, the child must first go through a day or two of fasting (to rid the body of all traces of glucose) and then begins a diet in which 80%-90% of the calories come directly from fat. This is all done under medical supervision to ensure the child doesn’t get dehydrated, to help mitigate some of the initial side effects, and to ensure the body goes into ketosis. The diet is described as “high fat, adequate protein, low carb”. It’s deficient in a number of vitamins and minerals, so the child must take vitamins. (But only sugar-free vitamins!)

The diet in real life

Last weekend, I had the pleasure of chatting on the phone with Stephanie of Adventures in Babywearing. Steph is the mother of three boys and a little girl who is due any day now. Her oldest son, Noah, started having seizures at around the same age as Jade. You can read his full story here, but the very short version is that he was on the diet for two and a half years and is now a happy, healthy, and seizure-free 7-year-old boy. I e-mailed Stephanie to see whether she’d be willing to chat. She’s a busy lady what with her brood, an impending birth, and running several blogs, but she answered my e-mail about 5 minutes after I’d sent it, warmly inviting me to call her.

The chat with Stephanie was very encouraging. I was happy to hear that Noah never had to drink bottles of oil. His diet consisted of lots of cream, butter, and mayonnaise, but he was able to have lots of different kinds of fruits and vegetables, too, just in controlled portions. After a few weeks, he was fine with the fact that his food was different from other people’s food. Stephanie shared some great ideas for making the staples of the diet more interesting, like making the cream into popsicles or adding special flavours to turn them into something more like milkshakes. She was able to work with a dietician who found ways to alter Noah’s favourite dishes to work them into his special diet.

There are challenges, of course. The child has to eat everything s/he’s given (something we’ve never forced Jade to do) and second helpings are not allowed, either. The portions look tiny, but the diet is a natural appetite suppressant. Cake and cookies and other party staples are pretty much off-limits, although Stephanie mentioned that there are recipes for “keto cake”. (She told me about a play-dough cake they made for Noah’s first birthday while on the diet. Brilliant!) Another challenge is convincing people that just because it’s a “diet” doesn’t mean there’s any room for cheating — there isn’t.  Cheating on the diet can make the child very ill or even bring back seizures.  One thing I’ve heard again and again from different sources, though, is that you get used to it and it just becomes a natural part of everyday living.

* * *

Stay tuned for Part II…

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.

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.

Home in the sunshine

27 Jul

I’m afraid I’ve been a bit remiss in not updating since Friday.  Thanks so much for all your messages of support; it helps immensely.

Jade had no further seizures on Friday, not even small ones, which was most likely because of the Valium in her system, as it hangs around for quite a while.  Saturday was back to normal with a number of small seizures in the morning and a few scattered thoughout the day.  Dr. Stuart kindly answered a bunch of questions we had and wrote up a new prescription for our now-depleted supply of emergency Valium and then we were discharged, getting home around one in the afternoon, just in time for Jade’s nap.  We managed to get one of the baby monitors functioning, so Michael and I had a lazy afternoon lounging in the backyard, enjoying a rare day of sunshine in this summer of rain.

Perhaps it’s the sunny weather (another beautiful day today) but our optimism seems to be back.  Jade’s bedtime Valproic Acid got boosted again and although it’s too early to tell just how effective this will be, she had a great day today (a total of nine small seizures) so we’re off to a good (new) start.

We’ll just keep our fingers crossed for more good days.

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