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

Re: [IPk] bad paeds care

Hi Rob,

I wrote a very long email this morning but Hotmail let me down. I'll try for 
a shorter version now;

Whilst you may feel angry and frustrated with your medical team I do urge 
you to be cautious at antagonising them too much. You don't know when you 
may need them and you may be able to gently pave the way for others once 
they have seen that other regimes can be used for children.
Equally I am not saying be a doormat. You obviously need to act as Yasmeen 
cannot be comfortable living with blood sugars like that quite apart from 
the long term implications.

I second the view that you should contact the pump companies for a little 
guidance. Certainly Hannah Dickinson at Medtronic MiniMed if not able to 
provide you with sympathetic Paed. Consultants and hospitals herself will be 
able to give you Jill Jones' number (she is Medtronic's nurse educator in 
the north and covers Wolverhampton. Hannah's email address is: 
email @ redacted

Funding issue - well I know that Medtronic MiniMed offer a 3 month trial for 
children. By the time you've arranged that, you never know NICE may have 
published their guidelines (hopefully remaining favourable as in their 
draft)!  John Davis has lots of funding information - he is contactable at 
email @ redacted

I find it so sad that so many people have the same struggles. I wish there 
was a way of devising a process for people to follow so that each new person 
didn't have to tread the same old ground.

All the best,

Heather B

>From: "Rob Reznik" <email @ redacted>
>Reply-To: email @ redacted
>To: <email @ redacted>
>Subject: Re: [IPk] bad paeds care
>Date: Fri, 29 Nov 2002 21:23:31 -0000
>Hi Abigail - thanks for your reply. My diabetic daughter ( Yasmeen ) is 
>just 10 years old and has been diagnosed 2 1/2 years. I have been carb
>counting since September to keep the hospital happy that her intake is 
>control . Sorry I should have said that they felt the intake should be the
>problem as surely there cannot be an issue with the treatment! The 
>has been to see me twice since then but cannot find anything wrong with the
>food/eating habits. I refuse to see or speak to the Paed nurse following 
>c**p she comes out with.
>If my understanding is correct I will need to be particularly vigilant with
>carb counting, basal and bolus administration and check Blood sugars every
>hour. My wife is the breadwinner in the family so I am able to go to the
>school and check. Yasmeen has a packed lunch ( always advisable with a
>diabetic child ) so I am therefore able to count the lunchtime carbs before
>she eats. Out of my four children she is by far the most sensible and
>intelligent and indeed has been doing all her own blood and insulin
>injections since she was diagnosed.
>I am assuming that I will have to pay so I will not be persevering with
>funding. I am also contemplating the expense of a continuous glucose
>monitoring device but as yet have not found one which will display
>continuous readings - they all seem to need downloading onto the PC. I
>understand this later device will only be needed for shorter periods but
>this will also enable me to lend it to someone else who may need it. ( the
>hospital has one which is circulated between the 260 children!!).
>On the point of MDI's I agree that this would only be a stepping stone and
>my current philosophy is ' if you are going to do something then do it
>properly first time'. Whilst I understand that I will come unstuck at some
>stage there is always the expert advice available from sites such as this -
>thank you again.
>Yasmeen's HbA1c's have ranged between 7.2 to 11.4 earlier on this year when
>the Paed Specialist doctor prescribed the wrong insulin!!!
>I have been waking up at around 2-3 am and 5-6 am as she has had Hypo's and
>I now fear that she is becoming less aware of the Hypo symptoms during the
>Whilst I appreciate without the 'support' of anyone else I am letting 
>in for a tough few weeks but having discussed this at great length with my
>daughter I feel this is the only way to go.
>I would however like to ask a couple of questions.
>Having received and read a number of brochures on various pumps - which one
>would anyone here recommend and why.
>Which makes of insulin prove to be more stable/reliable than others.
>Many thanks for all your help
>----- Original Message -----
>From: Abigail King <email @ redacted>
>To: <email @ redacted>
>Sent: Friday, November 29, 2002 7:43 PM
>Subject: [IPk] bad paeds care
> > Please do your share and make a tax deductible donation to the FALL
> > pledge drive. Your help is needed to raise the remaining funds
> > necessary for Oct, Nov, Dec. Won't you please give $10 or $20 a year?
> >
> >     http://www.insulin-pumpers.org/donate.shtml
> >
> > Your annual contribution will eliminate this header from your IP mail
> >
> > Rob
> > Funding for a pump may be difficult and prolonged
> > Paeds DM care is woefully inadequate in many centres and other parents 
> > list are also bitterly disillusioned
> > However, a pump does pose risk of suboptimally used. I am sure that you
> > well competent to use it but if your daughter is unassertive about needs
> > example, while away from home there are the potential for problems ( I 
> > talking about very frequent monitoring, always having backup system for
> > insulin administration etc)
> > You could demand a trial of MDI in the interim which would enable you to
> > become more familiar with dose adjustment, carbohydrate counting etc. 
> > be the best option. If you're determined for a pump see it as a 
> > stone"
> > What is your daughters HbA1c and does she have frequent hypos/ feel
> > have poor quality of life due to DM?
> > If NICE decides to fund pumps it will almost certainly be after a trial 
> > has proven to be unsuccessful despite best efforts on the part of 
> > carer
> > I expect you were labelled as an overwrought obsessive freak for wanting 
> > better life for your daughter and not being prepared to put up with the
> > implications of erratic control
> > I am a GP and have read some ridiculous letters from diabetic clinic, 
> > make my blood boil at times. ( Not so bad now, we've a new consultant 
> > pushes MDI/ uses analogues and is really using glargine a lot)
> > ----------------------------------------------------------
> > for HELP or to subscribe/unsubscribe, contact:
> > HELP@insulin-pumpers.org
>for HELP or to subscribe/unsubscribe, contact:

MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. 
for HELP or to subscribe/unsubscribe, contact: