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

I'm amazed and impressed as always Jackie. Have you thought about writing a

As for words of wisdom, I'm now a convert who takes more care, and they're
the worst kind of people for giving advice! Through my involvement with the
diabetes federation of Ireland though I've seen a few things which seem to

First, I can understand no young person having much faith or interest in
what I say. They have different role models, such as sports or pop people,
and we should make a lot more use of this resource. My kids get excited if
the local tiddlywinks champ comes to visit their school, so it doesn't have
to be Zidane (or Keane!). Playing games and sport are things kids really
want to enjoy without disturbance, and the reality is that you can only
manage this well if you take good care, and know what your bg is before and
after playing. I had a hypo once during a game of rugby at Eton. The butler
ran off and returned about 30 mins later with a silver bowl of sugar and a
spoon! I think some of that sugar is still stuck to the roof of my mouth,
but I remember lying back afterwards thinking 'so this is how the other half
manage hypos'!

Second, for older kids, getting together with other kids is great. They
encourage each other, into good not bad habits. Camps and the like are a
nightmare for parents but they work! Sometimes the parents can go too.
Recently in Ireland we had a young adults' activity weekend, and the
feedback was all about the psychological benefits of meeting others. I was
scared by the body image concerns these great people had because of their
diabetes, and these are easily reduced when they meet other people they
like, admire, even fancy, who also have diabetes.

Finally, and I'm sounding like a record, I believe we are close to beating
type 1 diabetes, at least in terms of making tight control possible without
testing or adjusting doses. My advice to young people with diabetes is that
taking a little extra trouble means you will get to a cure in the best
possible condition! This way you will be able to put diabetes completely
behind you. By the sound of things, your Sasha, and Joanne's Miles, don't
have a thing to worry about even if that day is still a couple of years

On that point, I'm going to the ADA in a couple of weeks, and I promise a
detailed report. Is anyone else going? If so, we could meet. Last time (2 yr
ago) I came home determined to give the pump a try. This time, who knows?


----- Original Message -----
From: "Jackie Jacombs" <email @ redacted>
To: <email @ redacted>
Sent: Monday, June 03, 2002 2:20 PM
Subject: Re: [IPk] I've started the ball rolling!

> Tony wrote
> > Thanks Jackie, I found that detail fascinating. I suspect you touched on
> > common feeling about the response of teams to very good HbA1c's. For
> > 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.
> > 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
> 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
> for Sasha, as we do check  during the night and I now I give her only
> long lasting too drop her very little from 11.30.  This means if she is
> than 9 or 10 mmols I can give her half a unit of Novo and know that her
> 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
> 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
> exercise that day she would probably go through the night OK.  I always
> to get up once in the night so I always do a check.
> > My own experience of teenage diabetes was more primitive, both in
> > (no mixes or analogue insulins those days) and in philosophy - for me,
> > fear of hypos was paramount, to the extent that I settled for glucose
> > around 12 most of the time. I didn't test, because I didn't need to! I
> > happy because I wasn't having hypos, and I equated trying for better
> > with having hypos all the time.
> I don't know how Sasha will react when she is a teenager as I am sure
> care will be right down on her list of priorities.  I will have to step
> and perhaps do the necessary things like making sure that we are not
> out of insulin and reminding her to do the injections and encouraging her
> 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"
> then 3 hours later whatever it is is still left undone!!!  I imagine that
> 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
> the end.  One of the reasons that I think it is important to keep good
> now is that I am sure that the teenage years will be much harder for Sasha
> keep her levels lower.  Due to hormones and the fact that as a teenager
> seem invincible and there are far more interesting things to find out
> 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
> > about physicians who opt out; part of the duty of a modern professional
> > keeping up with developments, and in cases like yours, his main role is
> > be a facilitator to help you use whatever tools are available to reach
> > 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
> > 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
> 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
> and she deals a lot with type 2 diabetes.  She still seems a lot better
> some I have heard of.  I dont know how funding is obtained for more
> for paediatric diabetes or for clinics that can oversee pumps.  Our clinic
> 76 child patients.
> As for saying that you didn't test much and that was when you were a
> student, is there anything that you can think of that would have made you
> 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
> etc?
> > Essentially what I'm saying is the balance of power should be shifting.
> > you know better, say so. Don't put up with 'sorry but I don't know
> > about that' and don't let anyone, doctor or not, contradict your
> > in managing your own diabetes, or that of your child. I'm not talking
> > rebellion, I'm talking discussion, an exchange of viewpoints, and
> > an agreed position that upholds your view and that of the doctor in
> > 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
> > because teams really do want things to go well.
> Our paediatrician hasn't been too bad with us but then I think I have
> many, many hours on the internet finding things out so that when I have
> 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
> still worried.  One of the members of my support group who has got a 6
> old who has had D since he was 22 months old has been invited to join a
> 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
> > 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
> > people's views into account as soon as they are old enough to express
> > with increasing influence until they are old enough to take full
> > responsibility. With something as personal as diabetes, and with a
> > 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
> 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
> something a parent wants to discuss.  He always makes a fuss of Sasha and
> 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
> 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
> 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.
> 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
> 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
> snack.
> Sasha doesn't feel well if her bg are high she gets headachy and feels
> symptoms to a hypo.
> I am trying to think what aspects of her care she does herself.  Well,
> let her test in the classroom and so if she feels weird, high or low.  She
> go and test.  I have given the school a chart which I have adapted for
> that says how many glucose tablets or extra snacks she needs depending on
> 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
> then she needs to do something.  She tells the teacher she is testing and
> reads the chart the teacher used to have to do it for her, then she
> what to do.  If her reading are really high we had a 19 mmols last week
> before lunch ( a cold starting) then she came and phone us and I went up
> give some insulin.  She also sometimes decides not too eat too much lunch
> she is a bit high although sometimes she isn't hungry anyway if she is
> Now she is on Novorapid she doesn't really need an afternoon snack any
> 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
> the afternoon.  On Saturday she goes for 3 hours to a drama dance and
> group.  She has to take care of herself there and test if needed.  So far
> is always having too much fun to test and I usually make sure that she is
> 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
> 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.
> syringe would be much easier.  Also she has problems with numbers and
> 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
> 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
> easily deterred but finds school work hard at times.  She is always full
> enthusiasm and the teachers say how hard she tries.  Sasha and Beckie were
> delivered 2 months premature because Sasha had stopped growing and scans
> 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
> last 6 months things have been much better and she is not struggling so
> anymore and things are falling into place.  But she is much more agile
> 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
> things and her verbal skills are excellent.  I think I have to be careful
> I don't expect Sasha to take on too much but as she is now 8 I think she
> begin to take over quite a few things.  I do tell her that a bg level
> "good or bad" it is just a number that tells us whether she needs more
> or more food so that when things aren't right she wont feel blamed if
> are not going right.
> Off out to the local outdoor swimming pool now.
> Jackie
> > Tony O'Sullivan
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