[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]

Re: [IPk] I've started the ball rolling!

Tony wrote

> Thanks Jackie, I found that detail fascinating. I suspect you touched on a
> common feeling about the response of teams to very good HbA1c's. For many
> people it seems if the HbA1c is any way high they blame you (us!) and if
> it's lower than they are used to, you're accused of being too paranoid. I
> think, as both a physician and a person with diabetes, that you are an
> excellent role model for other parents, and for young people with diabetes.

I can understand that Dr's have to be on the cautious side at times and that a
low HbA1c could mean undetected nightime lows.  This is not the case however
for Sasha, as we do check  during the night and I now I give her only enough
long lasting too drop her very little from 11.30.  This means if she is higher
than 9 or 10 mmols I can give her half a unit of Novo and know that her levels
won't continue to drop from the action of the NPH.  If I give extra insulin to
correct I or my husband always check 2 hours later.  Usually we only have to
check once in the night unless she is ill and in which case we check more
often and correct.  If her bg is about 7mmols then unless there has been extra
exercise that day she would probably go through the night OK.  I always have
to get up once in the night so I always do a check.

> My own experience of teenage diabetes was more primitive, both in technology
> (no mixes or analogue insulins those days) and in philosophy - for me, the
> fear of hypos was paramount, to the extent that I settled for glucose levels
> around 12 most of the time. I didn't test, because I didn't need to! I was
> happy because I wasn't having hypos, and I equated trying for better control
> with having hypos all the time.

I don't know how Sasha will react when she is a teenager as I am sure diabetes
care will be right down on her list of priorities.  I will have to step back
and perhaps do the necessary things like making sure that we are not running
out of insulin and reminding her to do the injections and encouraging her to
think ahead.  My two older teenagers need constant reminding about taking
things to school now and are always saying that "I'll do that in a minute" and
then 3 hours later whatever it is is still left undone!!!  I imagine that it
will be pretty much the same but the consequences of forgetting injections
however is obviously more serious.  I am sure that we will muddle through in
the end.  One of the reasons that I think it is important to keep good control
now is that I am sure that the teenage years will be much harder for Sasha to
keep her levels lower.  Due to hormones and the fact that as a teenager you
seem invincible and there are far more interesting things to find out about
and do than bother about good control.

> I believe things have changed a lot, so that we are now free to try for
> better control without loads of hypos by using the range of insulins and
> devices (including excellent meters) at our disposal. From the sound of
> things, you and your daughter have done exactly that. I am less forgiving
> about physicians who opt out; part of the duty of a modern professional is
> keeping up with developments, and in cases like yours, his main role is to
> be a facilitator to help you use whatever tools are available to reach your
> own goals. Pumps are one of those tools, and it is no more fair for a
> physician who is unsure or unconvinced to simply stick his head in the sand,
> than it was for me to ignore the evidence that good control would protect me
> from complications (particularly as for much of the time that I wasn't
> testing, I was a medical student!!)

Our paediatrician is the senior Dr in the children's hospital and I think he
has enough on his plate at the moment.  They can barely fit all his
appointments in as it is.  The D nurse is not a paediatric specialist nurse
and she deals a lot with type 2 diabetes.  She still seems a lot better than
some I have heard of.  I dont know how funding is obtained for more recourses
for paediatric diabetes or for clinics that can oversee pumps.  Our clinic has
76 child patients.

As for saying that you didn't test much and that was when you were a medical
student, is there anything that you can think of that would have made you test
more often.  Are there any words of wisdom that you can pass on to our
children.  Anything that would have made it more likely that you would test

> Essentially what I'm saying is the balance of power should be shifting. If
> you know better, say so. Don't put up with 'sorry but I don't know anything
> about that' and don't let anyone, doctor or not, contradict your expertise
> in managing your own diabetes, or that of your child. I'm not talking
> rebellion, I'm talking discussion, an exchange of viewpoints, and hopefully
> an agreed position that upholds your view and that of the doctor in equal
> measure. That is all it takes to turn a mundane and ineffective
> doctor-patient interaction into a truly effective relationship. The
> initiative has to come from us, because it is our side that sees the
> imbalance that often exists at the moment. 9 times out of ten it will work,
> because teams really do want things to go well.

Our paediatrician hasn't been too bad with us but then I think I have spent
many, many hours on the internet finding things out so that when I have asked
for a change I usually have some idea what I am talking about.  My husband
usually come along too.  Perhaps this makes a difference.  But I know that
other parents find him too complacent about high numbers and sends them away
still worried.  One of the members of my support group who has got a 6 year
old who has had D since he was 22 months old has been invited to join a small
team of people trying to improve the services given to Paediatric Diabetes
when they are admitted to hospital and whilst visiting the clinic.  So this is
a step in the right direction.  I dont think it actually covers the care
provided when you are in the clinic though.  Just the waiting time etc.

> One last point, Sasha sounds like a kid who is well established with her own
> diabetes. I bet she has a point of view too. How do you get that across,
> Jackie, and what aspects of her own care have you handed over to Sasha
> herself, and how did that go? My own belief is that we should takes young
> people's views into account as soon as they are old enough to express them,
> with increasing influence until they are old enough to take full
> responsibility. With something as personal as diabetes, and with a limited
> capacity for decisions to make any immediate impact on the long-term
> outcome, this might happen as young as 12. What do you think, Jackie and
> other parents?

One of the good things about our paediatrician is that he always speaks to the
children and asks how they are.  He sees the older children without their
parents too although he speaks to the parents and child together if there is
something a parent wants to discuss.  He always makes a fuss of Sasha and they
have a chat.  She is not in the least intimidated by Drs and nurses.  Not
because she is a forward child particularly but just because due to asthma and
things she is very used to going to the hospital and doesn't see if as
remotely threatening or scary.

I do tell Sasha what we are doing and why.  If we have changed the insulin I
tell her why we are using a different sort and how it works.  She is quite
interested in how her body works and of course the bits that dont work.  If
she comes home from school and her bg is on the high side and she wants a
snack I usually say to that if she wants something right now then she should
really take some extra insulin or she can wait leave out the injection and
wait till later.  She usually chooses to have the injection and have a larger

Sasha doesn't feel well if her bg are high she gets headachy and feels similar
symptoms to a hypo.

I am trying to think what aspects of her care she does herself.  Well, they
let her test in the classroom and so if she feels weird, high or low.  She can
go and test.  I have given the school a chart which I have adapted for her,
that says how many glucose tablets or extra snacks she needs depending on what
the time of day is  i.e if it is nearly snack time or lunch time she may be ok
to wait, but if she is low and the next meal/snack time is not for a long time
then she needs to do something.  She tells the teacher she is testing and then
reads the chart the teacher used to have to do it for her, then she decides
what to do.  If her reading are really high we had a 19 mmols last week just
before lunch ( a cold starting) then she came and phone us and I went up to
give some insulin.  She also sometimes decides not too eat too much lunch if
she is a bit high although sometimes she isn't hungry anyway if she is high.
Now she is on Novorapid she doesn't really need an afternoon snack any more,
the other children dont have one, they dont have an afternoon playtime.  So I
leave it up to her to decide if she thinks she needs a biscuit at school in
the afternoon.  On Saturday she goes for 3 hours to a drama dance and singing
group.  She has to take care of herself there and test if needed.  So far she
is always having too much fun to test and I usually make sure that she is a
bit higher on those days.  I did tell her only to eat half her snack on
Saturday as her bg was quite high just before she left but she ate it all
because she was hungry which was fair enough.

I am still worried about her doing her own injections as now the pen is a 3ml
one and not the 1.5 ml one we used to have  it's just too big for her to
manage to get to get a grip on and depress the plunger at the same time.  A
syringe would be much easier.  Also she has problems with numbers and still
gets confused at times and often writes numbers backward and gets confused
with telling the time.  The children are in sets for maths.  Sasha is in the
lowest group so that she gets special help.  Beckie her twin is in the top
group and has no trouble with numbers. Sasha is brilliant at trying and isn't
easily deterred but finds school work hard at times.  She is always full of
enthusiasm and the teachers say how hard she tries.  Sasha and Beckie were
delivered 2 months premature because Sasha had stopped growing and scans of
her umbilical cord showed that she needed delivery within days.  Sasha was
only just over lbs. when she was born and my husband could hold her in the
palm of his hand.  Her legs and arms were only as thick as his fingers.
Anyway Sasha didnt need ventilating and Beckie who was lbs. needed oxygen in a
hood thingy for a few hours.

Sasha was always slightly behind Beckie in some abilities and writing and
drawing were very hard for her.  Numbers are confusing for her although in the
last 6 months things have been much better and she is not struggling so much
anymore and things are falling into place.  But she is much more agile than
Beckie and more able physically and much more willing to do new things. So
they each have their own special talents. Sasha has an incredible memory for
things and her verbal skills are excellent.  I think I have to be careful that
I don't expect Sasha to take on too much but as she is now 8 I think she will
begin to take over quite a few things.  I do tell her that a bg level isn't
"good or bad" it is just a number that tells us whether she needs more insulin
or more food so that when things aren't right she wont feel blamed if things
are not going right.

Off out to the local outdoor swimming pool now.


> Tony O'Sullivan
> ----------------------------------------------------------
> for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
> help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml