Hanging on the telephone

One of the outcomes of the big, multi-disciplinary meeting we had with several of Z’s doctors last month was a decision to push harder for Miss Z to join the medical cannabis trial that is starting in Queensland.

For those of you who might not follow the developments in the treatment of intractable epilepsy, it has been discovered that medical cannabis can reduce seizures and increase cognitive function in some kids with uncontrolled seizures. After a long battle in Australia, the use of medical cannabis has been legalised – hurrah!

However, there are still some hurdles to obtaining it, and when you can get it, the cost can be prohibitive (unless you’re buying from unregistered suppliers).

All the doctors I’ve spoken with are confident that within a few years, medical cannabis will be available for epilepsy as readily as any other antiepileptic medication. However, until then, the easiest and safest way to access it is through a medical trial.

So, when I heard that the Lady Cilento Children’s Hospital, where Z receives her medical care, was going to run a medical trial called the Compassionate Access Scheme, I signed her up – along with pretty much every other parent of a child with uncontrolled epilepsy in Queensland. Our neurologist was a bit skeptical at first – mainly because it isn’t a real scientific trial – all the kids receive the medical cannabis oil, no one gets a placebo. However, the promising early results made her decide that Z would indeed be a good candidate.

A week after our multi-disciplinary meeting, I got a call from the trial to arrange an appointment for Miss Z. I was so excited that I immediately took to Facebook, declaring Z had been accepted into the trial. Cue lots of celebration.

Alas, I was a bit premature. The appointment, it turned out, was only step one to joining the trial. And I also found out some fairly surprising news – that only 30 children across Queensland would be chosen for the trial. Only 30!

Miss Z was her typical self during the appointment. She was seriously unimpressed about being dragged into an early morning hospital appointment on her school holidays. So, she scowled at the doctor, and grizzled, and tried to kick him when he examined her. There was none of her typical Z-charm was on show that morning. In fact, the doctor asked me if she was always “so distressed” – which I tried to answer honestly without actually saying “no, it’s just you”.

The appointment established that Miss Z definitely qualified for the Compassionate Access Scheme. However, the next step is that her case – and those of other candidates – would be considered by a panel of doctors who would choose which children would be offered a place on the trial. If we aren’t offered a place on the trial, then we can go on the waitlist, so that we may be offered a place if another child drops out.

I left the appointment with a grumpy child (who cheered up immediately once we left the doctor’s office) and a promise that they would contact me when the panel had made its decision.

And so, now we wait. I feel like someone who has just been on a first date and is waiting to see if he liked me enough to ask me out again. Seriously. Did he like us? Will he choose us? Will he call?

I’ve even resorted to getting my friends to ask his friends if he is planning to call – although instead of friends, I’ve used nurses and her neurologist to try to find out when a decision might be made. QB is like my bestie, reassuring me that the doctor will call me – after all, I did three pages of seizure charts and graphs for him!

I keep running through the appointment in my head, thinking of how I could have made Miss Z’s case more compelling, better arguments for why she needs the treatment, examples of what she can achieve when she isn’t suffering multiple seizures a day.

Logically, I know the decision isn’t going to be made because he likes or dislikes Z, it will be on a medical basis, considering things like contra-indications with the drugs she currently takes, the risk of side effects and the options still available to us. But I still can’t help but feel like we are party of a beauty parade.

And is it even something we want to win? If she gets on the trial, it will be a big, fat declaration that yes, Z’s seizures really are that bad. It can be difficult to know what is bad versus manageable when you have a child with uncontrolled epilepsy. What is bad for her might not be so bad for another child, or vice versa.

Plus, despite positive results for some kids, it is important to remember that it doesn’t work for everyone. Medical cannabis is like the Ketogenic diet or the vast range of anti-epileptic medication Z has taken since she was 6 months old – it works great for some, OK for others, and not at all for others. And there is no way to know if it will work for Z until we try it.

So, I keep my phone close and wait to see if we get a second date.

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Sleepiness is one of the side effects of seizures for Z. If she has a big seizure or a cluster of them, she will often spend the rest of the day sleeping.

 

 

 

 

 

What we really need

There are a million articles out there in special-needs-parent-blogger-land about things to say or do for a parent of a child with special needs or who is medically fragile. But none of them cut to the real heart of what every parent of every child who is medically complex need: space.

No, not space to think, or relax, or to talk about their feelings – although those things are undoubtedly good. I mean actual space, you know, to put stuff. Because what no one tells you when your child is first diagnosed (or not actually diagnosed, as in our case) is you should prepare for their stuff to take over your house, starting immediately.

When we bought our house, we thought there was loads of space. I thought we would never fill the huge closet/storage space under the stairs and two-car garage, let alone the built-in wardrobes, laundry room (with closet), and other spaces. But we have. Mostly with Miss Z’s stuff.

It occurred to me today just how much storage space Miss Z requires when her nappy delivery arrived.

The Queensland government funds “continence aids” for children 5-years and older. A huge thank you to them for doing this – especially since once your child outgrows Huggies, the costs rise significantly. So well done them. Except, that the system for receiving continence aids means that you receive a bulk delivery of nappies every six months. That is a lot of nappies to arrive on your doorstep all at once. It looks like this:

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Incongruous juxtaposition: Michelangelo and a 6-month supply of continence aids

We also have to order Miss Z’s formula from a supplier. Fortunately, we can choose to order whether we want a one or two months supply. Since we don’t have the space for 16 boxes of formula plus a box of giving sets plus a box of bottles to give her water, I can only order one month at a time, which isn’t the end of the world, but does make me feel like I’m forever on the phone ordering more…

We also receive Miss Z’s mic-key tube extensions, syringes and suction machine supplies once every two months. I’m responsible for organising this order, so at least that gives me a bit of control about what and when we receive them.

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Formula, medical supplies… and cat food.

The formula and the medical supplies, along with the nappies, are stashed in the space under the stairs. They pretty much take up the whole cupboard and much of the storage space.

Since Miss Z spends most of her time upstairs, we keep smaller amounts of all these supplies upstairs, rather than running up and down stairs every time we need new formula or a syringe. They are stashed upstairs with her medications, the spare bottles of medication (because missing a dose of a seizure medication isn’t an option), the emergency seizure medication kit, the supplies for the G-J tube, Z’s diary, and other bits and pieces (because there are always lots of extra bits and pieces).

And that is just the medical supplies (well, most of them)! As she grows, Miss Z needs an increasing amount of equipment, too.

Some of it is small and follows her around every day – such as the suction machine and the feed pump. I recently picked up a new suction machine from the hospital. They proudly informed me that the new machines came with their own carrying bag. And then they presented me with a large, black bag that resembled a voluptuous old-school laptop bag. While it is well-intentioned, and I’m sure someone, somewhere will find a carrying bag useful, I’m never going to take the time to disassemble and pack the machine into its bag for transport. We might need it en route after all, and it is a lot easier to have it sitting beside her than trying to open a bag and attach the relevant bits when you’re trying to suction her in a car on the side of the road. Plus, the bag needs to be returned when I swap machines next year for servicing, which means I need to find a place to stash it – and where I’ll remember where it is a year from now.

Not all of Miss Z’s equipment is small, however. We have needed to start using a hoist to lift and transfer her in the playroom, where she spends most of her time (although truthfully, QB and I still just lift her ourselves most of the time, but at least we no longer have to worry about damaging the backs of Z’s support workers). The hoist is helpful, but it is huge. And there is nowhere to put it. At the moment, it also serves as a drying rack for laundry and if I forget to take off the sling, the cat uses it as a hammock.

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Just so long as you don’t want to sit in the blue chair, it’s fine…

We are also starting the process of modifying our upstairs bathroom to be accessible for Miss Z. For the past year, we’ve used a raised bathtub to bathe her, but that is becoming increasingly difficult as she gets bigger. An extra bathtub obviously takes up a bit of space. It’s a good thing it is on wheels, so it can be pushed back and forth, depending on if  you need access to the bedroom door, sink or toilet…

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A two-tub bathroom…

The other big piece of equipment, Miss Z’s new wheelchair, lives in the new elevator. Handy how that works out! And so far, we’ve managed to avoid a standing frame or walker at home – instead arranging for her to use one at school, which we can borrow on the school holidays. However, if her progress with the walker continues, I suspect one of those will be on the list soon.

And I won’t even mention the garage. I have rather a lot of stuff stashed there – both current equipment and things we no longer use. QB is constantly after me to “do something” with it all. I’m currently in denial. Or hiding.

The point of this all is that Miss Z needs an awful lot of stuff to meet her daily needs. And that stuff takes up an awful lot of room.

So the next time you wonder what you can do for that parent of a child with special needs? Offer them closet space. Really, it’s what we need.

Preparation

img_0382.jpgAfter several months of uncontrolled seizures, today we have a big multi-disciplinary meeting at the hospital. It was organised at the request of Miss Z’s neurologist, who I suspect may be running low on ideas about how to get Miss Z back to a better level of seizure control.

She requested that Miss Z’s palliative care doctor attend the meeting as well. Intellectually, I know that palliative care has a different meaning for children and that she probably wants him there to be part of the conversation on quality of life versus seizure control – but I couldn’t help but feel a bit unsettled.

Miss Z’s paediatrician will also attend, as she is responsible for managing Z’s overall medical care. And probably also someone from the nursing team that helps me manage Miss Z’s care, appointments, medications and resources at the hospital.

It isn’t often that you get more than one of Z’s doctors in a room at the same time, so I’m taking this meeting seriously. I spent the morning on data entry – putting all of Z’s most recent seizures into my seizure log spreadsheet. Since the raw data is a bit overwhelming to look at, I’ve also created several graphs and charts to help illustrate how things have been going.

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I have to admit being proud of this one, mostly because it looks good, even if it might not make a lot of sense!

I’ve printed out several copies, so that I’ll have enough to provide hand-outs at the meeting.

I have also written a list of questions I want to ask and topics I’d like to raise.

I’m also taking videos of several of Miss Z’s seizures, because it is much easier to show than describe what they look like.

Oh, and I have confirmed the room where the meeting is taking place and texted QB the location, so that we’ll all arrive at the right place.

Of course, things never go as smoothly as they should. Our car suddenly needed an emergency service, so I’m going to have to collect Miss Z from school, travel to the hospital and then home again using Uber and wheelchair accessible taxis. In the rain.

Preparation is everything.

 

Not at her best

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Post-seizure snooze on Mummy

I haven’t written on my blog for a couple of months now, but I think I needed a break. While nothing dramatic has happened, Miss Z has been… challenging. And frankly, it has worn me out.

To recap the past few months, Miss Z’s seizures have gone a bit crazy. The number of seizures has slowly been increasing since the start of the year, but recently she’s been having up to five or six a day (and those are just the ones we know about, I’m sure we are missing more).

After a particularly bad day in which Miss Z had two seizures that required Midazolam, as well as 3 others, our neurologist scheduled her to be admitted for a 24-hour EEG and full check-up to see if we could figure out what was going on.

For the first time EVER, Miss Z cooperated and actually had several seizures while hooked up to the EEG (usually being hooked up the EEG guarantees she’ll go seizure-free until they take the probes off). Unfortunately, it didn’t really give her neurologist much clue about what was happening – apart from confirming that she was having seizures. So, we left the hospital with a plan to increase significantly the dosage of her newest medication, Lamotrigine.

Along with the increased seizures, Miss Z also began to have some new behaviours. The first was repetitively doing the same actions, over and over again. QB and I call it being “stuck in the loop”. Usually, she rolls onto her back and begins to kick both feet followed by moving her right wrist in a circle up near her head, then kick, kick, circle.

That doesn’t sound so bad, right?

Except that there is no eye contact and no interaction with other people or things – she is completely in a world of her own. And it is nearly impossible to snap her out of it. Talking to her doesn’t help. If I hold her hand or foot still, she’ll pull it away and continue the repetitions. If I sit her up or roll her over, she jackknifes until she’s back on her back and can start the repetitive actions again.

To make matters worse, she seemed to get stuck in the loop every night when she went to bed. And she would do the actions over and over again for hours. She seemed trapped in the movements – it was clear that she wasn’t enjoying doing it. I would think she’d settled to sleep, only to check on her in bed and discover her bathed in sweat, frothing at the mouth, eyes wide and frustrated because she’d been looping for an hour or more.

The second behaviour that developed was tantrums. And not just any tantrums, but screaming, howling, out-of-the-blue tantrums where she was completely inconsolable. She would bite her hand, scratch her ears, pull her hair and shriek to the heavens for what seemed like hours for no apparent reason.

Miss Z has always had tantrums or “hissy fits” as we like to call them. They mostly stem from her being frustrated, bored or uncomfortable and not being able to communicate it to us in any other way. But the frustration tantrums are always easily resolved – change her position, give her attention, turn on ABBA, or give her a cuddle and she’ll be happy. These new tantrums, however, seem to need to run their course. And sometimes once they’re finished, she has a seizure, which makes me think perhaps she can feel it coming.

The good news, possibly, is that we might be making some very slow progress. Possibly. She is being weaned off the Lamotrigine, since if anything her seizures have increased on it, and has started Zonisamide. Since then, the number of seizures have decreased to one or two most days. Although she still has a seizure lasting over five minutes (hence requiring Midazolam) once or twice a week.

She also seems to have become less stuck in “the loop” lately, too. And I’ve started giving her Melatonin to help her get to sleep at night. I’m not convinced it makes a huge difference, but at least she isn’t staying up for hours doing repetitive movements anymore.

The tantrums, unfortunately, are still there, although more of them now seem to be able to be resolved with some attention or a change of position. I’ve begun bulk-buying spiky sensory gloves, which she wears inside out to help soothe her, give her additional sensory feedback and protect her hands from the biting.

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Seriously, Miss Z loves wearing these inside out

Still, she’s had three seizures today – one of which ran 6 minutes and required Midazolam to stop it. So it doesn’t always feel like we’re actually making progress.

 

The problem with seizures is that it is never clear what to do. Even neurologists admit that they’re not sure what will and won’t work, and for most things, all you can do is try. And nothing works overnight. It all requires a gradual process of increasing and decreasing medication levels over the course of weeks, or sometimes months. And when do you decide something isn’t working, and when do you wait and see?

Miss Z’s neurologist and nurses admonish me with “say when it gets too much”. But it is much harder if Miss Z is admitted to hospital than if we manage at home. After all, we’ve been dealing with her seizures for nearly six years now. QB and I are a well-oiled seizure management machine.

So, for now we’ll carry on. We’ll hold out to see how this new medication goes. I’ll keep my eye on her, my phone close at hand (don’t even ask about the seizure at school when I’d left my phone upstairs and the school couldn’t reach me) and never set foot outside the door without a stash of Z’s rescue meds on me.  And I’ll keep working towards some alternative options we might be able to try.  With Miss Z’s seizures, all you can do is keep trying until something works – I just hope that something comes along soon.

The right to education

I’ve written another post for Firefly, and this one is a little more political than usual. I generally try to steer clear of politics when writing this blog and about Miss Z because my objective is to share our experiences, not my personal views. However, sometimes the two overlap and I feel compelled to explain a bit more about how some of these political decisions can affect Miss Z, our family and those in a similar situation.

Re-reading my article online after Firefly published it, I got a feeling that I might have been a bit too conservative with my opinions. This is a topic on which I feel very strongly, after all. And I think it is one that not everyone fully understands.

I hate the attitude that I find, even among well-meaning people, that Miss Z’s education is optional, a fun activity for her to fill her day, or a welcome break for me to relax. Her education is every bit as important as any other child’s.

Yes, what she does in school every day is different from your average first grader. But that doesn’t make it less.

Some people might argue that there is no need to invest in her education because after all, its not like she is going to graduate, get a job and contribute to the economy. While that is probably true – disabilities and medical fragility aside, she has a life limiting condition that means we aren’t even sure if she will make it to graduation – it is also a narrow, old fashioned view. Amazing technological advances mean that being nonverbal or having a disability isn’t as limiting as it once was. Who knows what technology will be available or the world will look like when Miss Z is an adult?

And even if she never does anything more than live at home with QB and me – does that mean that she shouldn’t have the right to a good education?

There is one thing of which I’m very sure: Miss Z’s education will improve her quality of life. It already has in the year (and a bit) that she has been going to school.

So, don’t ask me if Miss Z is going to school (she’s nearly 6 years old, of course she is) and don’t think that we only send her there so I can drink coffee or work (although it is an undeniable side benefit). She goes to school because, just like other children her age, she needs to learn to socialise with her peers, become more independent, communicate more effectively and become literate and numerate.

And most importantly, wherever you live in the world, do not let politicians tell you that Miss Z and children like her have any less right to a good education.

You can read my blog post for Firefly here.

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