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

Small Steps

In June 2003, my 13-month-old baby boy stopped trying to walk, stopped cruising, stopped crawling, and started crying and clinging.

So began our journey with juvenile idiopathic arthritis, or JIA – a long, hard, often lonely road, with no end in sight just yet.

We'd known since he was six months old that something was not quite right; at that time, he'd been diagnosed with iron-deficient anaemia and cow's milk protein intolerance.

Then, at 13 months, our son's left ankle swelled up right before my eyes. But it wasn't until B was 19 months old that he was diagnosed with JIA, which the doctors in hindsight say was probably causing his symptoms when he was six months.

B didn't start walking until he was 21 months old. Now, nearly five years later, we are still treading carefully with this disease.

JIA is a cruel, chronic, sometimes crippling childhood illness. The term refers to all types of arthritis that affect children.

Too many kids with JIA are written off as being whingy, lazy, or slow to grow. JIA is often misdiagnosed as 'growing pains'.

At first, B was diagnosed with 'pauciarticular' juvenile rheumatoid arthritis, a type of JIA that affects four or fewer joints. His diagnosis has since been upgraded to 'extended oligo JIA', since the disease has spread to more joints.

JIA is felt by every member of the family. The affected child often cannot describe what they are feeling, since the average age at onset is just two years old.

Parents may go through a guilt and grieving process as they blame themselves for either causing it, or being unable to cure it.

And siblings have their own emotional rollercoaster ride as they see their brother or sister getting extra attention for their pain.

But since JIA is not hereditary, it has the added effect of making one feel incredibly alone.

Now, I am not one to sit back and suffer in silence – I want to know the answers, and will keep asking until someone can give them to me. I want to share my knowledge and support with others too.

If I did not turn the despair that I have sometimes felt into positive energy, I would just be a little saline puddle on the floor.

I'm still trying to find the answers to many questions, but I've spent a lot of time on the phone sharing what I do know with other parents of newly-diagnosed children (what can I say, I like to chat!).

And I've set up an Australian online support group for JIA, which now also has members from all over the world. Anyone, at any time of any day, can post a query, or have a cry, and someone is 'listening'.

There is little real awareness of JIA in our community, either among the general or medical population. So I designed a logo with the message that "Kids get Arthritis too!".

We wear it every day, as a kind of walking billboard. It starts a lot of conversations!

When I learned that JIA is actually more common than type 1 diabetes, cystic fibrosis, or cerebral palsy – yet was not automatically eligible for the Centrelink Carer Allowance like these other illnesses – I fought for it to be so.

When I realised there was no branch or organisation specifically to help JIA children and their families, I bothered our state Arthritis Foundation until there was one.

When I saw how far many families have to travel to get treatment, I started working with my state and federal politicians and our local children's hospital, to get regional JIA clinics operating.

And when I heard about some awesome parents in the United States who'd set up the American Juvenile Arthritis Organisation (now JA Alliance)– which has an annual conference that brings together families from all over the USA – well, I knew we had to start fundraising and get a passport!

Our trip to Pennsylvania in June-July 2007 convinced me of two things:
• Australia is not so far behind in its medical management of JIA – in fact, in some ways we are ahead. (B's health team is fantastic!)
• We still have a way to go to get a national organisation and conference such as the AJAO happening here.
(I also learnt that five-year-olds are intrigued with public rest rooms, but that's a whole other story!)

In amongst this advocacy, I work two other jobs, and I have the everyday demands of being a wife and mother.

I dread having to give B a needle in his little tummy every week, and struggle with the fear of side effects of the various medications he must take.

I hate having to hold him down for blood tests and other medical procedures. I get tired of rounding up the kids for yet another trip to hospital. And I despair at the stares in the street, and the bullying that B suffers at school.

But while I absolutely despise this disease, I will not let it stop us from loving life.

I try to enjoy every day. I relish every time I hear my kids laugh, or see my son try to run.

And at the end of the day, I feel a kind of humble pride that I can make a difference.

Jx
©2008

Our Bitter Battle

For more than three years, nearly four in fact, I have fought with my son.

And yes, at times it has turned physical.

Those were the times I have had to forcibly restrain my child, using every ounce of strength that I could conjure up inside myself, to carefully hold him down and stop him causing bodily harm to himself or others. Sometimes I have failed to do so- and we both have the scars to prove it.

My son is four years old.

And our daily battle is over Arthritis.

In the more than three years since my son was diagnosed with Juvenile Idiopathic Arthritis, I have had to put him through hell in a diabolic “damned if I do, damned if I don’t” scenario.

Starting with making him endure countless blood tests that turned my once-robust bouncing baby boy into a human pincushion, from the age of just 7 months.

Throughout all the x-rays, bone scans, MRIs, aspirates, injections, twilight sleeps and general anaesthetics.

During the prodding and poking and castings and fittings by physiotherapists, occupational therapists, and orthotists.

Amidst the stretches and exercises of the hydrotherapy pool.

Beyond the examinations by Paediatric Rheumatologists, ophthalmologists, orthopaedic surgeons, geneticists, dental technicians, dietitians, and other clinicians.

And in and out of every single day, with medications, limitations, and frustrations.

For almost four years- nearly an entire lifetime for my son- I have had to wrestle with my precious child, and plead, beg, cajole, and convince him to take supplements that counteract or contribute to the drugs that I have no choice but to pump into his little body.

I have had to coerce him into wearing splints, bandages, and orthotics designed to straighten and strengthen his little limbs.

I have had to force him to take the extra medicines needed when he falls prey to yet another illness, this a result of suppressing his immune system in order to combat his own body’s auto-immune attack.

I have had to hold him steady while casts are put on to treat fractures that happen all too easily while his little bones fight to retain precious protective calcium. Then reassure him as they use all manner of tools to take the plaster off again.

I have had to wrap my arms and legs around his, and restrain his head and body during blood draws or eye drops that leave us both crying and utterly exhausted.

I have had to inflict untold torture upon myself as well as my child, as I inject medicine into a tiny little tummy that barely has enough fat for a needle to find its mark.

And I have to tell myself that I must be so cruel only to be the kind of mother who would do anything she can to rescue her child from this bitter battle.

The cruelest part of all is watching my son, my little man, my big boy, my baby, my miracle- adopt it all and adapt so well to these awful demands that are placed upon him by both Mother Nature, and his own mum.

He knows no other way.

It has been his life since almost the start of it; and it is now simply normal for us to go to such abnormal lengths to fight a perceived “rare” childhood condition that is far too common in children.

My son is the 1 child in every 250 thought to have this supposed "old people's" disease. He is the 1 child who could be in any school or suburb in Australia who looks well enough on the outside, giving no indication at all of the turmoil within.

How do I fight ignorant beliefs and explain that Arthritis does indeed strike our innocents and counts the very young amongst its ranks? It can hold them hostage for life.

How can I explain that it is his own body that is hurting him? As with every auto-immune disease, the "good soldier" cells meant to protect my son have instead turned their troops against him. To stop their approach, we must bring out a barrage of “big guns” to suppress their attack, in turn weakening his defenses and depleting his reserves even further.

It is a battle plan no commander would ever want to deploy.

Yet like any commandant, I must weigh up the risks and losses against any ground we could possibly gain. We simply must be prepared to fight this unseen enemy to the bitter end. I must stand stoically on the front line alongside my entire family, as together we face a foe that it supposed to be a friend.

It is indeed cruel.

To see my son give his toys 'blood tests' or 'tablets'- then give them a kiss for being so brave.

To hear my son reciting doctors’ name or various medical procedures, with varying degrees of pleasure.

To feel my son wriggling and writhing in angst and anger as he is put through even more pain in the name of progress.


To know that my son still loves me unconditionally for being there every time.


I don’t know if that hurts me or helps me the most.


But it does inspire me to get back up and fight another day.

Jx
©2006

Hell at the Hospital (or, Don't Look at the Broccoli)

Ever have one of those days?

You know the ones I'm talking about- the dog barks all night, you can't sleep for coughing, no bread for breakfast, the car won't start first go, a not-so-friendly red Reminder notice in the mail, technology malfunctions at work, you fight with your hubby, the kids fight with each other, reeeallly bad hair day, and then ... uncooperative vegies.

Yep, after the hell of the last few days/weeks/months, I am faced with floppy broccoli.

Call it the straw that broke the camel's back (Do camels eat broccoli? Or straw for that matter?) but it is enough to make me squeeeeze the last few drops out of the red wine bottle, and want to run away from the world for a while.

Here's the Reader's Digest™ condensed version for you:

My son had to go back to hospital (second time in just over a month) for some pretty aggressive treatment for his Juvenile Arthritis. Now, at age 7, and having had JIA since he was about 7 months of age (and being under anaesthetic 7 times now), he is, understandably- OVER it. So he resisted- with extreme prejudice- the latest lot of aspirations and injections.

And so, having had to leave home a whole day ahead of schedule to catch a train (a load of laughs with a wheelchair) then beg a bed and a ride with a friend because my car is still M.I.A., it was one unhappy little boy that was being prepped for anaesthetic. So I had to hold him while they put the numbing cream on, then hold him down again while they cannulated him, and then I had to hold the gas mask over his face to put him to sleep because he flat out refused to let the doctor or nurse do it. Oh, and then gently hold him down again as he was coming out of it (like a junkie on a bad trip).

In the days after he has been alternating between crying and cranky due to the pain of having needles stuck into his swollen joints (and quite frankly, can you blame him?) and all he wanted for tea was fish fingers and broccoli (it's his favourite vegetable, go figure).

So because My Beloved has taken himself off to bed, I am on dinner duty again (do mums ever really get a day off?) and I pull the vegies out of the fridge. You got it, floppy broccoli.

I pad it out with the frozen veg I keep on hand in case of emergency (like, now!) cross my fingers and hope for the best. With luck, he won't notice, I can put the kids to bed at a reasonable time, and get back to the business of draining the dregs of the red.

Cheers!

Jx

©6 May 2009