Monthly Archives: March 2013

They’re worth advocating for

We recently returned to NZ for some dental work I needed ( I won’t bore you with the story as to why there & not here in the States) & I will say the flight back was rather more successful than the last if any of you read my “Fifty Shades of Green” post. Although it was just the boys & I – the absence of constant vomiting made a 13 hour flight with a 5 & 3 year old like a walk in the park. Score!

And to just share one of those “I’m a naf, bragging parent” moments (I don’t have many)- my kids have turned into super-trooper travelers.

Ethan becomes like a 30+ year old, standing with me, helping with bags, holding Mylo’s hand & encouraging Mylo to rise to the occasion.

Mylo manages somehow to control his mostly constant urge to combine his apparent ninja-like powers, with his cookie-monster charging voice & remain calm for basically the whole period.

How on earth we have managed to be blessed with these two super stars I have no idea, but I can tell you now, I was thanking the gods every step of the way as truly, their behavior – was outstanding & I will be forever grateful (I mean that too – I’ll likely regale future wives with the story & shame them at significant celebrations with it too).

Our trip to NZ was significant for various reasons but the one I want to post about is primarily the healthcare we received there.

My oldest son Ethan is 5. He attends elementary school & started with the new school year in September 2012 being on the cusp of turning 5 & thereby one of the younger ones in the class.

He’s been through 5-6 pre-school environments in the past 5 years due to our relocation’s from New Zealand to Spain, back to New Zealand & then on to the States where we currently base ourselves.

As such he’s (in my opinion) quite socially resilient – he can be shy but adapts well & so long as he finds a buddy, he’s independent & quite happy – even often asking to stay longer.

Once he reached school the same applied & we transitioned very successfully.

However as a room parent volunteer, I am in the classroom on occasion & began to notice that Ethan was making much less progress than many of his peers. Generally speaking his literacy skills were quite poor. And whether this is because he lacked a strong & consistent academic foundation thanks to our nomadic lifestyle (& let’s face it – my lack of input) or that he was on the younger side & just not ready I wasn’t sure.

Speaking to his teacher she was confident all kids more or less reached a sufficient skill level to progress to Grade 1 by the time summer vacation arrived & we’d reassess if that was not happening.

While I noticed all this I was also attempting to follow up on some general health issues – since moving to the States, Ethan began having reasonably frequent ear infections. He’d never had them before.

They could be so bad that his eardrum would rupture & we’d find fluid the next morning after a bad night had by all.

He also started sucking back fluid (mucus) from his nose constantly – he’d blow his nose & nothing would come out, but you could hear it right in the far reaches of his nasal passages being sucked back into his ears – constantly.

I mentioned the ear infections to the doctor on a number of occasions – apparently you needed 5 in a year for them to be willing to refer you to an ENT specialist.

When I mentioned that not all infections were documented as if we missed the antibiotic window they encouraged us (via the phone) to allow the ear to heal naturally. I also mentioned the ruptured eardrums which I was concerned about & the look I received was one of alarm & disbelief which was what I wanted as it reflected my own concern.

Yet I was quickly dismissed as they’d not been documented….. never mind the fact that as many issues occurred at night when I would call the next day they’d tell me there was no point coming in by that stage.

During this period of a year or so, I asked for 2 hearing tests which they did oblige me on & both were normal. However, the tests are somewhat superficial – at our doctors office they do not test the inner ear hearing levels.

All the same, I was assured that everything was fine. The doctors said all was well (of course) & what’s more – that the fluid Ethan was always sucking back was “probably annoying you more than him – give him Claratyne.”.

Running parallel to the health issues during this period, our biggest  challenge with Ethan was the whining.

Now all kids whine I know that. I also know about 10 various behavior management theories & strategies due to my over-anxious nature which leads me to read all the parenting books only to feel like a complete failure as a parent & in more of a muddle than I began.

So we tried various techniques but overall, Ethan seemed just “one of those kids” who was constantly tired & therefore prone to meltdowns & whining. He clearly needed more sleep than his 3 year old brother & that was just one of those things.

However – just before we were due to fly to NZ, on a whim I decided that we’d try to see an ENT specialist in NZ as I didn’t need a referral, the rates are reasonable by comparison to here & I felt so comfortable with the system, I had the confidence to share my concerns about the ears, the fluid etc etc.

The day after we arrive, we trot off, they do an comprehensive hearing test & low & behold, Ethan has significantly moderate hearing loss. They immediately schedule him into the public children’s hospital place grommets/tubes in, remove the fluid & also his adenoids.

The comment post surgery was – it was a complete mucky, mess in his ears. The fluid & issues had been present a long, long time & he clearly had significant sinus issues which is why the adenoids had to come out. They assured me the procedure would lead to Ethan not only hearing normally, but also sleeping better & enjoying improved general health.

And low & behold – he is sleeping better & – believe it or not, whining less!!!!!!!! Hooray!!!!!

It (the whining) has not been eradicated (I think it is something like an arm – unless we chop it off, it will be present), but Ethan is – happier! He copes better, sleeps better, is less pale & listless AND the best part is – when I was in the classroom just last week, he was actually mucking around & being silly.

Now I imagine you’re thinking – how is being silly a good thing? Surely most of us don’t want our kids to behave that way?

And I guess no I don’t ultimately, but for now it’s a sign Ethan feels well enough to behave that way. Previously in the classroom he looked more dazed & confused. He looked as though he had no clue what was going on – oblivious & almost ambivalent would be the words that come to mind. His lethargy & sheer lack of luster concerned me every single time.

Seeing him distracted & playing the fool indicates to me he has energy & vitality to do so & for right now, I’ll take that over the previous state of affairs.

What frustrates me – well, angers me in truth is that for about year I worked on following this up but  clearly I did not work hard enough. The procedures Ethan has are by no means uncommon & considered fairly minor all in all – yet despite this, not one professional followed up on my repeated concerns.

I made frequent appointments, mentioned these issues time & again, took him to an allergy specialist,  had extra hearing tests, tried various allergy remedies – we even recently got a tutor thinking we needed to step up his academic programme to help him in school – nothing worked (well, the tutoring helped his confidence which is worth its weight on gold of course).

And no one supported me.

In fact – I felt more like the over-involved, paranoid mother than ever before.

We’ve been down this road on a more extreme level with Mylo. I had to seek various opinions & advice on his developmental delay which eventually let to a cerebral palsy diagnosis. He’s had significant support since then & has exceeded all expectations thus far. We’ve been incredibly lucky.

However, the resources we utilized came only because we fought to get the diagnosis & access to resources.

With Ethan, I feel ashamed I did not fight harder. He has significant amounts of catching up to do academically & emotionally I think we had a rocky road for quite some time – unnecessary conflict thanks to his inability to hear & his general state of tiredness & feeling unwell.

When are health professionals going to listen to the parents? When was I going to be heard?

It took flying home to NZ & seeing a specialist there (who I cannot say enough about) who primarily was willing to listen & act on my concerns.

Michael Neef was incredible – he got us sorted promptly & efficiently & was a huge support even if to him it was simply a part of his job. I cannot thank him enough & only wish that a year or so ago when the first glimpses of Ethan’s issues began to repeatedly become apparent – our doctor here had listened to me.

Had heard me & helped us then instead of writing me off as the over-anxious mother who is ignorant of true medical conditions & simply needs to manage her child’s behavior & performance better.

“He’s a boy” is a comment I heard frequently.

What happens to those parents with concerns that are more far-reaching than mine & who do not have the options or the confidence even to keep pushing? I know every time I brought up these issues & every time I was blown off, I felt a fool.

What happens to those kids with chronic or life-threatening issues? I mean we presume they’ll be picked up on – right? I’ve no doubt that the majority of the time they are picked up on – they have to be…..

But my plea to parents right now, regardless of all the magnificent medical professionals out there & the low chances that kids do slip through the cracks – is to be vigilant, be on top of things, follow through & be confident on what you see & know of your kids when things aren’t right.

Be your child’s advocate as you’re all they’ve got.

 

 

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