OF COURSE THERE IS A CLINIC WHO COULD HAVE SEEN US

by Veronica on February 21, 2012

in Headfuck, Isaac

Last night I received a phone call from our ever lovely case worker at ECIS. She was keen to know whether Isaac would be involved with Early Intervention this year and in what capacity we were able to attend.

During the course of the conversation, Isaac’s bowel issues came up and she asked whether we were being seen by the Incontinence Clinic at the Royal Hobart Hospital.

No? We didn’t know about the incontinence clinic (even though we have a child with a constantly leaking bowel), or that we could have been referred to them. Our Paediatrician, despite working at the same hospital, never bothered to let us know about it. Then again, it’s a bit hard to refer someone on to a clinic when you refuse to listen and take the issues seriously.

In hindsight, OF COURSE there is an incontinence clinic at the hospital. Doesn’t that just make SO MUCH FUCKING SENSE?

It feels like we’re coming at all of Isaac’s medical problems from three steps behind the ball. We don’t know half of the information we ought to, because no one bothered to listen to us long enough to find out what we need.

We see our new Paediatrician in a month. This guy comes highly recommended, both from our GP and more recently, from our ECIS case worker. He is, by all accounts, good at what he does.

This will be a change for us.

Isaac is a complicated case. He has Ehlers Danlos Syndrome. His joints are lax, his gut is as well. He has issues chewing and prefers soft foods. He has Autism, but is high functioning enough that our last Paed doubted the diagnosis. Then Isaac will spend 10 minutes repeating a TV show script over and over to himself. He has sensory issues surrounding food. He doesn’t like new people, or crowds, or any noises louder than normal speech. His bowels don’t work correctly and no one knows why yet.

He is complicated.

But aren’t all children complicated and full of contradictions?

We’ve been telling doctors for over two years about Isaac’s bowel issues, being brushed off every time. Finally, when we realised that our Paed hadn’t rescheduled us after we couldn’t make our last appointment (No, we’ll send you out a letter, yes, okay, thank you, bye!) we demanded that someone else do something.

Having to fight for every step that we’ve taken on this journey with Isaac means that I am tired. It means that I don’t trust the medical professionals and their opinions anymore. It means that I have tried everything in my bag of tricks and still come up with nothing.

It means that I really need this new doctor to DO something and MAKE THINGS WORK.

Because at this point, Nathan and I are left looking at each other, exclaiming that OF COURSE there is an incontinence clinic and OF COURSE, no one thought to maybe refer us to it. Despite, you know, the INCONTINENCE ISSUES.

Argh.

Wendy Hatton February 21, 2012 at 7:46 am

My daughter developed juvenile Rheum Arthritis when she was 9 and I felt the same horrible range of emotions as you do when trying to deal with it and get help. One of the worst feelings was the exhaustion knowing I had to serach again for someone to help when I was just so tired , fed up and disillusioned. (I also did not want to hear myself be blamed, again, for my daughters condition!)
Now her son (8yo) has an autism disorder and she spent years not being believed & not being referred etc, etc. I am glad I was able to help her by, among other things, supporting her quest for help, ringing around for her and going along to ask the questions she was too exhausted to remember. My experience and greater age let me be ‘bossy’, pushy and insistent which is not easy when you are at the centre of the issue. It was still a long haul and I was ready to go to the newspapers and complain if I thought it would prompt action.
I hope you have friends/relatives who can support you with strength..and housework…and babysitting. Stay positive, you can do it.

Lady Fabulous February 21, 2012 at 8:59 am

FAR. OUT.

If you have the fight left in you, I’d complain direct to the AMA. Doctors like that shouldn’t be practicing – I’m going through the same thing at the moment with a GP. They need to be weeded out, one by one.

Hopefully this will mean a new start for Isaac and your whole family *hug*

Ali February 21, 2012 at 9:36 am

You can never, ever trust that doctors are going to do anything without your holding their hand/pushing them constantly/making a nuisance of themselves. It’s fabulous (and surprising to me) when they do but I now know that we as patients have to make it happen. I think we’ve all had that experience but sometimes the level of ineptitude that’s demonstrated boggles the mind! It’s so ridiculous. Your paed, sounds way less than impressive. Thank goodness that you’ve got a new referral.
xxxx

river February 21, 2012 at 10:23 am

Grrr, that’s so annoying when important information is left out of the loop.
You could have had Isaac already being seen by the incontinence clinic months ago.
You should have your paed immediately forward all his notes to the clinic.
Well, as soon as you have an appointment.
I’m assuming he has them on computer.
I’d be asking him to his face why he didn’t recommend this.

Tanya February 21, 2012 at 10:50 am

More than frustrating. O_o

Some doctors are just unbelievable. You feel like you’re talking to a brick wall and they’re talking to a bunch of dollar signs. I have an amazing GP who is my mother’s GP and my Daughter’s and I’m glad she is a decent Doctor!

On the other hand, I hope there is some help available there to the little man. It may have taken a few steps around in cirlces but eventually you got one step forward.

Sharon A. February 21, 2012 at 12:43 pm

We don’t have those issues, but other ones instead, and I tell you true, I can 100% feel your pain! Grr, makes me so angry

Signe February 21, 2012 at 2:33 pm

Mr Husband had a sore back for years and years. He had days where he couldn’t walk and when those days became more and more frequent I got so worried. The doctor kept giving him drugs that he didn’t want. After many consultations she said: I can give you a referral to a massage if that’s what you want… (in a tone that implied we were looking for freebees)
Luckily I was sane enough to say: no, I want an xray of his back (I found out later that it is a basic requirement for pain in backs – AND they are not allowed to refer you to a massage without an xray – go figure).
Turned out three vertibra in the lower back have somehow collapsed and started to grow together. A massage could have paralyzed him for life. We now have a new doctor and we put this slogan on the fridge:
IF A DOCTOR TALKS CRAP, DON’T GO BACK.
– but you want a doctor who talks about crap, so it may have to change…

Cat@jugglingact February 21, 2012 at 4:34 pm

Oh I feel for you. Our Paediarician said we did not need to yes our SPD child before he was 4. So glad we use our own heads and took him a 3 and made up a lot of progress .

Jayne February 21, 2012 at 5:26 pm

Oh, I hear ya, I imagine they’ve brushed you off with such helpful gems of wisdom like “He’ll grow into toilet training/he’s lazy/he’ll soon learn” etc.
We had one paed who prescribed laxatives to make Feral Aspie go (cos of course he was ‘just holding on to be naughty’) – which upset him to the point he has RIGID toileting routines to this day that Will.Not.Be.Changed.At.ALL.
And now he’ll kill me if he finds out I mentioned this….

Marita February 22, 2012 at 10:39 am

Don’t you just want to strangle those doctors who do not listen. I’m so grateful we stumbled across a fantastic paed early on in our journey.

kelley @ magnetoboldtoo February 23, 2012 at 11:43 am

I had a paed tell me when Boo was first on the waiting list for diagnosis that I knew way more than him and to call him if I needed a referral to something.

True story.

Legs March 3, 2012 at 10:49 pm

I hear ya. On one of our recent (many) GP visits with son1 for bowel issues (who is highly suspected of EDS with lax ligaments and low muscle tone, has coeliac disease, fructose & lactose intolerance – those tests done at my insistence I might add),
the doc went off at me for “chatting with the other mums in the car park” about allergies.
(wtf?! has he ever been in the school pickup zone after school?).
Keep at them. Never let your intuition be silenced! Hope that you get some answers.
Love your tagline “too bendy for my own good” btw, reaping the questionable results of that bendiness myself now in middle age :-/

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