He deteriorated really quite dramatically.
We called a locum to come and waited for about an hour for the locum.
In the meantime Tim was getting worse and worse, his lips started to go blue and we
thought we've got to get an ambulance.
I went into the casualty area and Dan came across to me and said, oh Tim has diabetes.
I was quite stunned by it because I didn't know children got diabetes.
She said he's going to be staying in for the full week, five or six days I think it was
and I thought why, I didn't realise what was involved and it was certainly a big gap to
jump and I think on a Tuesday he said we're going to have to inject him, give him his
nodal and I thought, us.
She'd had some sort of gastric bug and I'd taken her to the doctor and she seemed to
be urinating a lot and asking to drink a lot and I mentioned it to the GP and she said
it's probably just part of the virus but I had a sense that there was something more
than that because it was just too much.
And she said if you're really concerned, Mary, bring in a sample and I'll test it.
So that's what happened.
I took a sample in and we didn't get home, the phone was ringing and she was saying get
to emergency at the Royal Children's.
He'd had four to six weeks of really thirsty, lots of wet beds.
Scott first said it, he might have diabetes and I went oh no, he's two and a half, of
course it's not going to be the problem.
He's just had a cold and he's thirsty or whatever it was and yeah so when we actually got in
there and our GP's lovely and we said we think it's diabetes, she sort of was quick to say
oh no but we'll check anyway.
Yeah and I think she was just as surprised as we were.
The first question I know that there's a lot of concern for the family is, is this for
life?
You know, is this it?
Is this what we're going to be doing day in, day out?
And often it's probably the hardest question to answer because they know what the answer
is.
They're in a chorical and it's almost like that's their point where they either get the
tissues out and they have a good cry.
Yeah I mean the educators were really good when we were in the hospital.
We were a bit overwhelmed with what we had to learn because for the first few days we
were a bit teary about the whole thing and just pretty upset about everything and then
we just decided that we had to learn how to look after him.
What was really annoying was that other people suggested that maybe there was something that
we had done, maybe we'd given him too many sweets.
There's so many people in the population that are predetermined genetically to get diabetes,
it's a trigger factor that's got nothing to do with us.
All that sort of factual stuff was reassuring to me that it wasn't anything as a mother
that I'd done.
There's a lot of information about diet and diabetes out in the wider community that isn't
always correct so they always think it's a very strict diet, it's measured, there's
no sugar allowed at all and so often when I first go to see them they are highly stressed
about everything thinking that they have to change everything they're doing.
That was again one of the main motivating factors for why we felt there needed to be
an increased awareness in the community because it throws so much potential guilt on people
who don't deserve it.
Toddlers when they're thinking or trying to understand information think in very concrete
terms that is in the here and now and how it relates to their own experience.
So talking to them about looking after their diabetes to please the doctor for instance
is unlikely to be very helpful.
Now what do we have to do before we give her a finger prick?
Do we have to tell her something?
We have to tell her one thing, to be brave.
It's amazing even with toddlers that if you look at them with play with dolls they will
do exactly what their parents do.
So what are you going to tell Sally?
You have to be brave because this one's really real, okay Sally?
So they will use the language, they will position the doll the way their parents do, they will
talk to them, tell them off like their parents do so it's really good for them to have an
opportunity to do that and look at ways to make it better and more positive.
Now Sally you have to stop eating sweets.
But you have to have sugar don't you sometimes?
When do you have to have sugar?
Only when you're lowing for a little treat.
Yeah exactly right but that means you can have it just like other kids.
The blood test meter was resorted to many many times.
It became the only way I found to be able to determine whether he was hypo or whether
he was just being a toddler.
You sort of try and keep their lives as normal as possible but there are reasons behind behavioural
things sometimes and you really do need to check it.
Both a high glucose level in the blood and particularly a low glucose level in the blood
can lead to really quite disordered behaviour.
When the sugar level drops low this happens quite quickly and the child's behaviour may
change from perfectly normal to being really quite irrational over a matter of minutes.
We've made a pact between the two of us that if she's behaving badly she still needs to
be reprimanded for that.
So as long as we know she's eaten and we know her blood sugar is low she's in a room for
her bad behaviour and we haven't stopped that.
That was very difficult at first.
No snacking remember.
Remember you go to your room with your snack.
Remember that?
I can go to your room my little daddy.
One of the challenging issues to a family with a newly diagnosed diabetic is to not
set effective limits because of a perfectly understandable concern that the child has
a new illness, should be given extra leeway.
And that brings with it some problems because at some point by the nature of toddlers they're
going to push the limit.
Part of what they want to establish when they're pushing the limits is that the controls are
still there, that mum or dad still is in control, the situation is in hand which reduces the
anxiety.
They will pick up that negative behaviour is positive because you get attention.
So running around the house saying I'm not going to have my insulin or hiding underneath
the bed is still getting attention, still getting mum's time.
Parents have to learn to say okay I'm not running after you anymore, I'm going back
to the kitchen when you're ready because often they'll just follow you.
It's also very important that any of the tasks to do with looking after diabetes are never
used as a punishment.
I think she just likes to push the boundaries to see how far she can push not having to
wait.
And I don't think it's because she's not hungry, it's just a way of asserting her authority.
It is clear that if we get onto challenging behaviour early and quickly and set effective
limits that the behaviour tends to resolve itself.
It didn't hurt us to have a regimen.
I was always a rather disorganised person and in a sense it rather helped.
We very much have to work with families what their normal routine is.
So some families are naturally very regimented.
They wake up in the morning, they have breakfast every day at the same time, they have a snack,
they have lunch, they have afternoon tea because their kids come home from school, they have
dinner at a certain time and the toddler goes to bed at a certain time each day.
There are others that live a little bit more chaotically than that.
So what we generally say to families then is let's work with a loose plan.
And we can often say to a family if seven o'clock is a roundabout time that your children
get up in the morning or your toddler gets up in the morning, the flexibility is that
it could be eight o'clock or it could be six o'clock in the morning.
One of the things that's very easy for us in terms of caring for a child with diabetes
are the routines issues.
The child with diabetes needs that fairly tight routine where you know this will happen
and then that will happen and they've got to have food here and food here and got to
keep the fluids up and all of that sort of thing.
But that is the case for all the children in our care and it's just part of them feeling
secure in the centre.
To a certain degree we forgot about Jordan, everything was concentrated in Lockie at the
time.
I stayed in with Lockie for the first probably five days or so in a hospital and Jordan spent
a bit of time with the grandparents.
We were very conscious of the fact that this was not something that just affected Tim,
this affected the whole family, it affected Alan and me.
Being the big sister I did tend to think that I was the one who had to help him and look
after him so yeah I do remember when we used to go for treat days with our grandparents
they'd say you shouldn't be eating that, you shouldn't be eating that, you know those lollies
are bad for you and I think he got a bit annoyed at me because I was a bit of a bossy boots.
It's nice to know that you've got everyone wondering about it all and being so caring
and Louise really did, like I mean there are times I probably get really frustrated with
her saying what are you eating that for and what are you doing but on the whole no, she's
been great with it.
They feel isolated and they don't want to tell you.
They haven't gone out, they've not had an evening out, they won't let anyone babysit
the child.
Your grandparents are petrified of injections and finger pricks and they feel very very
isolated and they feel very very trapped.
I think it's something we've both struggled with.
We've slowly educated family and friends with books and leaflets and lots of oral communication
and lots of showing and again showing and more showing of what to do.
It's hard when we struggle to get it right ourselves to expect them to.
When they only do it once in a blue moon.
They tell you that they're the only ones that can do the care and then you've got to challenge
them to say but when you first came in you didn't know how to do this and you learnt
very quickly.
Other people can learn too.
You know who the people are that you can rely on.
It might be the litmus test in that respect because you soon learn, I certainly learn
how wonderful this family is and that they just have no problems, we're there for you.
When I eventually took up work again my parents looked after him and my sisters have also
looked after him as well as Darren's sister and we just basically showed them how it all
works.
It's a real gradual thing.
Like Chris said it started six to twelve months.
It might have been for a couple of hours in the afternoon, something like that and it
sort of worked its way up.
We really felt that life has to go on and you can't be controlled by this and so we
took all the precautions, we wrote out detailed notes and educated them as well as we could
and then went for it.
She'd already been going to this child care centre one day a week so we didn't actually
want to change anything for her.
We're conscious always that the parents will have concerns because they've passed their
child into our care.
It is a busy environment and it is group care so there's a whole lot of children that we're
needing to be looking after and that can give parents concerns that we might miss some of
those crucial signs.
We knew that had some training.
I was still apprehensive but they've been very good.
They call if they've got any queries and they've done all the right things whenever they've
needed to act.
I think the natural reaction would be to say oh only I can do this or only we can do this
and so I'm glad we did do it.
It's proven that it can happen and she loves it so much it would be terrible to have to
take her out of that environment.
The drama's centred more around food than around the blood tests and the injections
I have to say.
Well I think the biggest thing was that sugar was taboo because it increased the blood sugars
too much and I think that is the hardest one that people have had trouble even coming to
terms with today but just the notion of having to strictly measure foods and you could imagine
particularly in the case of a toddler you cannot make a toddler eat when they don't
want to eat or you can't withhold food from them if they're hungry.
If they're hungry they let the whole house know about it and so trying to pretend that
you can strictly measure their intake and get them to eat certain amounts at certain
times I think was ludicrous.
It's very hard with young children especially when Blake was only two and a half counting
everything that they eat they don't often just sit down and have a meal.
They'll sort of pick all day or they don't pick or they get a bit fussy about what they
want to eat and it's a hard time at that stage of their lives anyway but it's just that extra
bit harder with a child with diabetes because of all the checks and things that you have
to do.
The most important thing when it comes to the toddler's eating is setting a very good
foundation for basic healthy eating and a lot of families already are doing this and
aren't aware of it particularly these days they are more focused about what are healthy
food choices and I think if we can work with what the families are already doing getting
them eating regular meals and snacks based on carbohydrate foods and allowing the occasional
treat rather than making the treat the thing that happens every day then that's really
the most sound advice that we can give parents during that toddler stage.
Happy birthday dear Lachlan, happy birthday to you.
When it comes to going to birthday parties the advice we give to families is usually
just not worry too much about the foods that are going to be there because particularly
if it's not their own party they haven't got as much control over what's on offer.
I try to encourage them to have the diet drinks so that they're not having the sweetened cordials
or sweetened soft drinks.
The savoury things like the pies and the sausage rolls or the chips they can certainly have
some of those to eat.
But as for the other party foods we say let the kid go and enjoy them but just don't go
too overboard so you know if the child wants a piece of birthday cake that's fine but don't
let them line up and have five or six pieces and if there's lollies and chocolates and
things like that and particularly lolly bags we say let the kid have it you know bring
it home and perhaps share it with the family or have one and put the others aside for another
day.
We would expect that their blood sugar may go a little bit higher that day but we know
why it's because they've had a little bit extra to eat and as long as it's not happening
every day it's not a concern.
And we often find with parties particularly with toddlers they are so excited and they
are running around like absolute mad hatters that they actually need that extra sweet sugar
stuff in their system to prevent a hypo from happening.
So many parents are actually quite amazed at how much their kids have eaten, bring them
home, test their blood sugars and they find the sugars are still okay.
They realise very quickly what a powerful tool food refusal is and being a difficult
eater because when you think about it they have got no control over other aspects of
their management.
They have to do the finger pricks, they have to do the injections and food is one area
where they can manipulate it.
We have some general rules about how to approach food refusal.
The best way is not to panic and so the child doesn't realise what a powerful tool they
have if you're not going into circus tricks trying to get them to eat.
And I know she loves fruit bars so what I do is I would say okay Julia you have a fruit
bar and I have something else or otherwise you have something else and I have the fruit
bar and of course she likes the fruit bar and she will have the fruit bar.
To offer them a reasonable and acceptable choice between would you like milk or juice,
an apple or some crackers is much more likely to elicit a positive response than you've
got to drink your milk or you can't go to play.
And they will be so captivated by the fact that they have got a choice that they won't
realise they have actually given in on eating.
Then we do talk about maximising finger foods and snacks.
So if the child won't eat at the table you might chop up some fresh fruit and they might
nibble on that or some savoury biscuits or something like that and if that still doesn't
work then we really should prepare for a hypo.
Because I was so anti-sweets one of my big problems when I found out she had diabetes
was using things like jelly beans.
As it turned out Julia didn't like jelly beans anyway so she spat them out.
But the interesting thing for me was that I was glad to know that I could just use juice
without added sugar and fruit sticks and things like that that were naturally sweetened and
that I didn't have to actually give her sugar which is something that I think some parents
think about because of that notion of keeping her healthy and looking after her teeth and
all that sort of stuff.
In treating a hypo once again you have to be wary about what you choose because if you're
going to give jelly beans then the child will perceive that as a reward for not eating their
tea and then think I'll do this every night and I'll get jelly beans at the end of it.
If a child is confused with a low blood glucose level it's often very difficult to take food
because they'll absolutely refuse to drink or refuse to eat anything at all and will
spit out anything that's put into the mouth.
It's sometimes much more sensible to simply use glucagon.
It is so rare to see a severe hypo and it doesn't happen the day you get home.
It doesn't happen that year down the line.
It's often five, eight, ten, twenty years down the line and it may never happen.
Using the needle often was a very traumatic time and I can remember him would sometimes
hide underneath the dining room table somewhere else and we'd have to chase him around to
get him.
Injecting your child, I mean for me was a big psychological thing.
I thought can I do this?
And people that we know sort of if they're over and they've seen us they're amazed to
see an injection happening.
Here we have a person who's been told you have to give an insulin injection which we
term friendly needles.
To them it's not friendly.
To them it's actually quite invasive.
You're asking them to do something that you'd never ask someone to do.
A doctor gives a needle, a nurse gives a needle, a parent doesn't.
A large component of it is about getting them on side that what we're going to show them
is not as bad as what they've experienced in the past and we're going to help them with
some strategies to deal with it.
We both hated needles and the first thing we did was got some saline solution and some
needles and practiced injecting ourselves because we had to resign ourselves to the
fact that he was going to have injections from then on so we were going to have to do
them so we thought we'd better learn.
So we practiced on ourselves and each other.
Bruised stomachs, bruised arms.
We got good quick.
Realistically it doesn't bother him that much.
It hurts that much either.
I think he's just got used to it.
Which finger are we going to do?
We set the timer and give him a five minute warning.
We call that having medicine.
Your medicine will happen in five minutes and he can do what he wants for the next five
minutes or sometimes he chooses to have it straight away, sometimes he chooses to wait
the five minutes but we sort of say okay then you just have to do it because otherwise it
would just drag on all day.
There you go, all done.
If he wants to move away to do it somewhere private that's fine, we'll follow him with
that.
We have no family and friends just know he's not there.
We often find other kids are very curious and often it's a really good chance to then
bring in why he's having his insulin and what it means for him.
When she was younger she had a fetish with stickers, she loved them so we said look you
can have a sticker every injection so after the injections she'd rip off a sticker and
put it somewhere.
Would you like it in your arm, your leg or your bottom?
Your leg.
Your leg?
Which leg would you like?
This one or this one?
This one.
This one?
This one.
We've explained that the insulin keeps you well and I know you don't like the injection,
we don't like to have to give it to you but it has to be done and generally she just accepts
it but I understand it's not always that easy.
You going to get ready?
Yeah, I'm ready.
You ready to count?
Okay, are you ready to count?
One, two, three, four, five, six.
Good girl.
We really need five counts don't we?
Yay.
You're a very good girl.
I'm so proud of you.
Okay.
Look what you did to mommy.
I can remember suddenly just having a change of heart and not actually seeing the injections
as an enemy and like I always knew they were good and you had to have them but I think
just my awareness of why I was having them, you know I knew a little bit more and felt
more comfortable with it and realised that it actually didn't really hurt.
We of course changed insulin dose.
We changed the time of the insulin dose.
We changed the sort of food that he was given at night.
We introduced additional food.
We tried everything and could never really get a stable pattern.
Sometimes she jumps up to 20 odd and we think hold on we didn't do anything differently
today and I think that's the hardest part is that this morning for instance she had
just right for breakfast and that was all.
We went out and she had a banana for morning tea and we test her before lunch and she's
22 and we're thinking we didn't give her anything extra.
She didn't do anything unusual.
So sometimes unfortunately especially I think with toddlers they tell us that it's quite
natural for things like that to happen.
Blood sugars generally are a little bit higher in the age group for toddlers because the
fact is they're not true fasters.
Kids will vary from day to day, even the same child doing the same thing and eating the
same food every day will have very different blood sugars as well.
What we do rely on though is in clinic doing the hemoglobin HbA1c test because if you look
at the blood sugars and then compare it with what you're getting on that overall test we
can then make sense.
Since he's been diagnosed his HbA1c is tended to be in the fairly good range so obviously
the overall control that we have is quite good so we're really pleased with that for
his long term outlook on it but the odd occasion where he gets quite high it might be just
something that'll just happen or even when he's very low.
Sometimes it's unexplained.
We think we've done all the right things and it'll just happen.
There'd be a myriad of different factors, emotional, stress levels, whatever it might
be, all these different influences that affect the HbA1c control and for whatever reason
some nights the hypowarm occur.
Now mummy.
No you've got to eat first.
At the end of the day most kids are pretty grouchy and pretty grumpy and getting a meal
into them is often a little bit of hit and miss.
So my general rule is to say to a family if your child hasn't eaten well at dinner you
really need to know what they are two hours later.
Sometimes we just get unusual results, he'll be very high for no real reason.
Parent reason.
Other times he'll be quite low all night and if we are concerned we'll set an alarm so
we'll wake up and test him in an hour, an hour and a half just to make sure he's travelling
ok.
He doesn't even wake up the majority of the time for his blood sugar test, we'll just
do a toe, stick our head under his doona with a torch.
The one thing that we kept remembering was they said never ever compensate by taking away
food based on a blood sugar reading and I think that was the saving grace.
Because if she was say 22 which sounds like a very high score but for a toddler it's not
that unusual and if you didn't give them very much food they could suddenly plummet to hypo
in a very short time but giving her an extra serving of food would maintain her through
the night.
Lots of families get themselves into this rut at first thinking they have to know what
the blood sugar is every two hours overnight but in the end they will gain the confidence
that they don't need to do it but it's really important for them to know that it's a normal
feeling.
You can't get up every night and I think that's one of the things that all parents have to
come to the stage of accepting that you can't be there all the time.
Only families are very good at knowing when they've had enough or when things have got
too hard or when they need to actually brainstorm through.
At first you really feel like a bit of an idiot.
You think well hold on a minute I've read all the stuff and I'm doing all of this but
it's just not quite the way it's supposed to be.
Every time we got a high reading or low reading we were like on the phone and like.
And they were fantastic I think they were a real lifeline.
I'd encourage people to use the educators.
It might be just a common question that can be answered over the phone or it might be
the most serious situation where I actually have to tell a family to get in an ambulance
and come here.
No matter how loving the family support is they don't really understand and so that wherever
possible you need to be able to talk to other parents who are going through the same thing.
I think it is really important that kids with diabetes do meet other kids and you know you
can share your experiences and probably more so when you're older than when you're a toddler.
That even just seeing other kids and seeing people do blood tests makes you realise initially
that you're not the only one.
So I do think it is really important for parents to try and find out about diabetes, to understand
the various tasks and why they're important so that they can feel confident that what
they're doing is necessary and in the child's best interest.
And the child in turn is likely to feel more confident and relaxed about what's happening
to them if they can pick up those signals from mum and dad.
They can still lead a normal life.
There's not very many things that a diabetic can't do.
I always go back to this that when Blake was first diagnosed that his doctor said to us
look you know this is what's happened and this is how it is but when you look at it
from the brighter side the only things he's not going to be able to do in his life is
be an airline pilot or an astronaut and I still look back and smile because I think
I probably wouldn't want him to do those things anyway.
It is a horrible thing to suddenly have you know placed on you and there are all these
talks about complications and things that can go wrong but at the same time you know
just with good understanding so long as there's the awareness of what the disease is and how
to best treat it.
I think it can just become you know just a standard part of life which you know isn't
a big deal at all so it's definitely not the end of the world.