104 Needles

That's how many, on average, my son has in any given year.

104 times each and every year I must prepare medication, draw it up into a syringe, before sticking the sharp end into my little boy.

More, if you count the extra shots for blood tests he needs to monitor the effect of what we inject.

You better believe both he and I hate it every single time.

See, despite being diagnosed with supposedly the 'best' type of Juvenile Arthritis there is (if there is any such thing as 'good' JIA), with traditionally the best prognosis for remission- medicated or spontaneous- by the time a child hits adolescence; my child isn't following the textbooks and instead of stopping the meds, we've had to increase instead.

9 years into this JIA journey, he and I are still finding a way to making medicine more fun.

When your child is first diagnosed with a disease like Juvenile Arthritis, a parent- usually the mother (nothing against dads, it's just the way it is) gets a fast track to a medical degree, without the fancy certificate to whack on your wall.

You pick up the lingo almost by osmosis to understand the parade of practitioners you pass on the path to a pain-free childhood. I can discuss ANA, CRP, ESR, FBC, and LFTs with the best of them (my Beloved however has missed a few lessons and doesn't yet know his RFs from his ABCs).

You also get a few tips on how to administer medication at home that is more at home in a hospital. If you're lucky, it comes as a liquid that's fairly well received. Tablet form's a little harder to swallow. If you've ever given a pet a pill, you'll know just how hard it can be. One of the tricks is hiding crushed tablets in foodstuffs of similar colour until they catch on - despite our best intentions our son still has an aversion to yellow food (Methotrexate is yellow). He's not alone, studies have shown kids all over the world have had the same reaction to cheese, custard, bananas, even egg yolks.

When all else fails, it's needle time.

For someone who's never given an injection before, it's a pretty daunting task.  Tougher still if you're among the many who have needle phobia and faint at the sight of blood (my Beloved again).

They tell you to practice on an orange, or any citrus fruit with a skin similar to that of a human body - just take an empty syringe and practise poking the needle through. A little deeper for intramuscular injections, a little less for subcutaneous (see, told I could do medico-speak).

Braver folk take the next step and stick it into themselves, to find the spot that's as painless as possible.  I've only ever done so by accident (it wasn't that painless, incidentally), and over the years I've become much better at avoiding needlestick injuries.

There are also ways to numb the site so it'll be alright on the night. But EMLA® and AnGEL® both take time to work...time for fretting about what's to come.  Ice can numb the skin, but also makes it tougher to pierce and it's more like poking through a watermelon than an orange. After a few years of tears, the doctors told us as long as the skin itself is clean, you can go without, which reduces the pre-emptive fear somewhat, if not the sting itself.

We've come through it about 364 times so far. That's like a needle every day for a year, with a day's grace for Christmas.

And so twice a week for the next year or so we will do it again, and my little boy and I will share the pain with the purpose of one of these drugs working one day.

104 more chances to stop a disease in its tracks, and bring an end to using my son as a human pincushion for the rest of his life.

I don't want to think about how many needles we'll be up to, if we don't.

Jx

©2012

Singing in the Car

I think adults have a lot to learn from children.

I also think that if more adults were paying attention, the world would be a lot better place.

My most recent education has come from my young son, who has already taught us so much so far.

He has Juvenile Arthritis (JIA); he was diagnosed as a baby and has known no other way of life.

After years of constant pain, damage and disability, he has been accepted into a new clinical trial for the biologic known as Etanercept (Enbrel). It has been a loooooong time coming, and still cannot come soon enough for our liking. There’s only so much pain a parent can bear seeing their children suffer.

Due to very active and aggressive arthritis in his little neck, Master B has been unable to lift or turn his head for 6 months (he turns his entire body- try it, it's exhausting), both wrists have been swollen and unusable at times for >13 months (makes dressing, feeding, and toileting fun), his hip and shoulder are also giving him grief (but we've been able to keep him out of a wheelchair!), his jaw has made it difficult for him to open his mouth to eat at times (liquid diet when that happens, and not even the one that consoles adults from time to time if you know what I mean), and most recently his elbow has swollen up to the size of a tennis ball- he simply cannot straighten his arm. Oh, and since he stacked his scooter last week he has also flared-up his knee (along with a ripper of a graze). So you can see he has been struggling. As have we all.

He was in hospital three times last year with another visit on the cards if he did not get accepted into this study. He has "officially failed" all the medication he has been taking for the past, gosh, 7 years next week! That's a lot for a little lad to take, considering he’s only just turned 8.

Anyway, late in April our brave boy endured a 12 hour day, including 4+ hours travelling and 4 hours at the Children’s Hospital for blood tests, urine samples, and physical examinations, for the Screening portion of the trial. He could only begin the 2 year study if he tested negative to Tuberculosis (Tb) as biologics have been known to stir that dragon if lying dormant.

In May we did it all again for the Baseline visit, which came with the added bonus of his first round of Enbrel injections- to be administered once a week for 96 weeks. It was another marathon effort - 9.5 hours all told to travel and do even more paperwork to get things going (he is child #21 of 100 worldwide to start the study, the first in NSW and second in Australia).

While he wasn't overly fond of the blood tests he had to have again, at least it was only 2 tubes this time, not 6. And unlike last time where he suffered a little ‘performance anxiety’, he was both keen and capable of 'peeing in a cup' for the urinalysis side of things - giggling like a goblin as I tried to safely remove my hand holding the specimen jar out of the line of, um, fire ("Thanks son, we've got enough now. That's it, you can stop. Hold up, please!!!")

He did hide behind the door while I was preparing the Enbrel but was coaxed out and chose to have the injection in his arm. For those who don't know, this drug comes in 2 separate components- first you have to fit a needle to a syringe of sterile water and inject that into a vial of powder, then swirl it together carefully to mix (not shaken but stirred - James Bond would not be impressed). Then you have to fit another needle to another syringe and draw up the prescribed amount of mixed medication ready to inject subcutaneously or intra-muscularly to be more precise. Since I have been doing Methotrexate (Mtx- a nasty chemo drug) for years now the nurse thought I was totally capable of giving the first shot myself; she even said I flicked the bubbles out like a professional, LOL. Sadly my Beloved is needle-phobic, but does a great job of cuddling the lad.

Well I have to tell you, Master B said he felt the Enbrel was working that very first night! It was obviously kicking into his Temporomandibular joints (TMJs) as his little jaws did not stop flapping the entire next day, LOL. And he was up skipping (would you believe) at 9.30 Wednesday night. He beat his best mate in a running race at school on Thursday. Says he feels like Superboy!

Anyway, when he came sleepwalking into bed with me last night (luckily my Beloved was on night shift or things would've been a tad too cosy for comfort) I thought he may have been suffering a little (has happened before, his subconscious brings him to me right before he pukes or cries some nights. He's also excellent at taking himself to the loo while asleep, yay). But he awoke this morning, and aside from being surprised to find himself in my bed, he said he has NO PAIN AT ALL- for the fourth day in a row!

We can't remember that ever happening before.

While he now faces two injections a week, along with monthly blood tests and all that goes with it, our dearest wish is that this drug does the trick and our brave little boy can finally begin to enjoy a carefree & pain-free childhood, like he deserves. Doesn’t every child?

We’re back to the hospital again this week for the next phase of the trial.

And you know, on top of all this, he just keeps singing in the car on the way home!

How many adults do you know who would do that?

Jx
©2010

No Fleas Please

Took the family to the Vets yesterday.

Not that it wouldn’t be entirely out of place for our little band of 5 to require those particular medical services, but no, this trip was in honour of the newest addition to the ranks- Chester the dog.

Mostly of unknown origin (he was an RSPCA rescue pet) we think he is of Shih Tzu descent (with the regular Heinz variety thrown in for good measure), about 2 years old (maybe more, judging by his lack of teeth, but that could be from the ‘affections’ of the *previous owner). He is also the sookiest little furball I’ve ever encountered (again, remnants of the above*). And he is, we have discovered, allergic to fleas.

Given our geographical location, and the early onset of summer, you have no idea what joy that brings (it’s the gift that keeps on giving).

With temperatures soaring into the 40s I decided the furry little monster needed another haircut, so took to him with a pair of scissors last weekend (leaving enough fluffy stuff lying around for Dr Frankenstein to create an entirely new creature, should the desire strike him). This is how I discovered his whole-body aversion to fleas. Even just one of the little suckers will do it.

Being a good (if not reluctant) pet owner, I booked him in for a total health check up, and annual vaccination. Not wanting to miss out on the fun, the children insisted on tagging along. This is how our entire family came to be perched on two plastic chairs in the Vet’s waiting room, trying to break up the stare-offs and sniffing contests that ensued with other pending patients. Not to mention apologizing for the piddle puddles (boys will be boys, even if they don’t have all the ‘toys’, if you know what I’m saying).

Two hours and $186.02 later (good lord, I don’t spend that much money on myself!) it was home-again home-again jiggedy jig with a 3 month supply of flea/tick treatment, a bottle of specially-medicated shampoo, and 3 weeks of antibiotics in the form of 42 not-so-little white pills.

As I am always thinking of others, I thought it fair to share with you. I have previously posted my experiences with washing the dog (see Doggone It) so you can imagine the fun I’ll be having twice a week for the next 4. And so I will cut to the chase and present “Jo’s Guide to Dosing your Dog” (also applies to cats, with an additional warning/step of applying full-body armour to avoid the subsequent scratches).

Consider it my contribution to the pet-owning community … and my mother’s calendar of entertainment.

1. Get tablets
2. Get gloves
3. Get dog

Now, anyone when has ever attempted this knows all too well that numbers 1 & 2 combined can take a lot less time than number 3. Especially if the dog in question has been subjected to the pill popping process before. I have also found from previous personal experience that surprisingly, large dogs are easier to catch and hold than small dogs. Unfortunately, due to a paralysis tick, we have been forced to trade our large dog for a small one. :-(

4. Find a comfortable position (NOTE TO SELF: squatting down on the floor does not meet the criteria: little dogs can generate a great deal of forward momentum, and face planting is no fun for anyone)
5. Get dog
6. Firmly park backside on floor (can’t fall too far from there)
7. Put on gloves (MENTAL NOTE: probably should move this one up a few numbers)
8. Get dog
9. Wrap legs around dog
10. Using gloved hands, tilt dog’s head back and open mouth (the dog’s that is, yours is best screwed up tight, with or without lips between teeth to aid concentration)
11. Holding tablet between two fingertips, gingerly poke into dog’s mouth, in general vicinity of throat
12. Hold dog’s mouth closed
13. Release dog’s jaw
14. Pick up saliva-coated tablet from floor (not as simple as it sounds, I can assure you)
15. Get dog
16. Attempt to repeat numbers 9 to 11, poking pill further down back of throat (trying to avoid gag reflex for both dog and self at same time).

If successful, again move through numbers 12 & 13.

17. Providing there is no remnants of tablet within visible range, carefully release dog and prepare for small furry object ricocheting across the floor
18. Remove gloves, wash hands thoroughly (resist urge to use bleach) and follow with antibacterial rub for good measure
19. Refrain from cursing Veterinarian as you repeat steps 1 through 18 twice daily for the next three weeks.

I tell you, next time the kids ask for a pet, I’m going to recommend a rock.

Jx
©2009

My Life as a Lab Rat

I’ve been thinking about donating my body to science when I no longer have a need for it myself.

But as I returned home from my annual boobie-pancake-making session, it occurred to me that I pretty much already have!

See, on top of the regular XX chromosomes and other genetic bequests my parents passed on, I have been blessed with a whole lot of anomalies that have kept numerous medical folk entertained (and in business) over the years.

Here’s the CliffsNotes version:

Let’s start at the very beginning (wow, that brings back memories of playing ‘Maria’, but that’s another story for another time); while most kids are kept cocooned within their mother’s uterus for around 9 months before their official arrival, I was virtually hanging on by my fingernails inside mum’s tum. The doctors told her not to go down the procreational path any more after me either, but I’m thinking she would have come to the same conclusion herself, given the challenges I apparently presented from that point on.

Born with brown eyes instead of the regular blue, seems they haven’t been able to decide on a colour from that point on, and my kids often stand nose-to-nose with me to see what shade my irises have chosen to adopt that day. It’s a cool party trick really... if only I could control it, I could make money!

On top of the confused colouring, seems my eyes belonged to a dominatrix in a former life- each one likes to be in control, which causes no end of confusion with coordination (and makes for very interesting games of tennis, I can tell you). See generally the whole hand-eye thing relies on a clear cut dominance of one eye or the other, so while I am lucky in that I can do some things both left and right handed, there comes a point where neither eye is actually in charge, and that’s not the time you’d want to rely on me to catch anything thrown my way (might also explain why I’ve never walked away with a bridal bouquet). Mind you, it impressed the hell outta the ophthalmologist who discovered it, since he'd not actually seen this phenomenon before. Yay me.

My ears aren’t your average auricles either. I don’t mean I’d give ‘Dumbo’ a run for his money or anything, rather, these tiny little pieces of audible architecture have proven difficult for the ENT doc to do regular checkups which makes it tricky to discover the reason behind my tinnitus or so-called ‘aqua ear’ (don’t you know, with tinnitus, every voice rings a bell?). So instead of the usual advice to not put anything smaller than your elbow in your ear, the doctor is flat out getting his Otoscope in. (But at least I’m not really lying when I tell the kids “I can’t hear you!”)

Moving right along, I’ve long had a love/hate relationship with my dentist since my jaw proved lazy in its efforts of growing teeth. Instead of the standard 32 permanent pearlers the average adult is supposed to have, I stopped 6 short, also with no 'Wisdom Teeth' lurking below the gum line (some would say that says a lot about me). I distinctly recall the day the dentist invited no less than 4 others into the room to check out the xrays of my non-existent teeth. I can only say I’m glad they weren’t all charging me for the pleasure; even the dentist declared his family would starve from the lack of services he was able to provide in my case.

I’ll save you from the intimate details of my women’s bits, suffice to say that there are ‘ladies of the night’ who’ve had less men between their legs…and the whole payment thing is the wrong way round in this case, too. I should mention though, that my ovaries have pretended to be my appendix- but only the once mind you- as the surgeon cut the alleged offender out before he realised it was not the culprit at all. And after baffling so many for so long with infertility, the aforementioned ovaries then surprised the specialists (and shocked the hell outta me, I can tell you) by spontaneously producing the goods in the shape of my second, unexpected (but warmly welcomed) child.

I am also the proud owner of the “world’s smallest kneecaps” if you believe the orthopods and physiotherapists. And even my pulse has proven problematic, with one nurse actually declaring I should be dead, such was her frustration to find a pulse to please her.

Which brings me back to my decision not to assist Science after all when that event eventually occurs.

Left with a medical file of a size to rival all 7 editions of ‘Harry Potter’ (with equally as much magic and mystery therein), I have come to the conclusion that I do not actually need to leave my body for doctors to discover once I’ve shuffled off this mortal coil ... because I have given them more than enough to discuss whilst I’m still upright.

Jx
©2009