info on the pumps

[stressedmum]

Hi, Can anyone tell me about the 'pumps' that everyone is talking about.
Who are they suitable for, are they available on the nhs or do you need to go private, do they completely eliminate the need for injections etc.
My son is 11 and has type 1, he was diagnosed in october last year and is on 2 injections a day and is still having a lot of highs and lows, would it be suitable for him to try?
Thanks

[momof2]

Hi

The pumps are not widely available in this country. I spoke to Ben's nurse about a pump, and she said they only prescribe them as a last resort, when sugar levels cannot be stabilised and all other methods ahve been tried. I know, crazy isn't it?

Anyway, from my understanding, the pump does eliminate the need for injections, but there is an infusion that is inserted beneath the skin that has to be changed every few days.

Hope that answers your query.

xx

[n_K]

You can get them in the UK depending on your location, the chance of getting one in london is higher than in smaller parts of the UK, you do not need to take injections (unless the site bleeds or the pump breaks) but you have to do more blood tests, control compared to injections is much better, injections control from 14 - 20 years on injections is guesswork, on a pump it is much better.
Again, depending on where you are, you can get one if your HbA1c is over 7.5% and if injections are not working, or so i believe, i got a pump 7 years ago and things have changed but if my mum is on here somtime, she will explain more (working nights atm)

[stressedmum]

Thanks for that, i am interested in finding out as much about this as i can, so if your mum can tell me more that would be great.
Take care,
Lee-Anne

[n_K]

here, found the important part of the NICE guidlines, http://www.helper3000.net/d4t/cms/uploaded/_Splith_/Document/input%20children%20choic.doc

also for your son, this may be useful (parts may need editing out):
http://www.helper3000.net/d4t/cms/book.php

[stressedmum]

Thankyou. I am going to have a good look at it later.
Just a quick one for you, my son has just had his HbA1c test done and it was 8.7. The doctor said that this was good, but i don't really understand what it is.
Sorry to be a pain but everyone seems to talk in medical jargon and at the hospital appointments there is always so much to talk about in such a short space of time and i never seem to be able to take it all in.
Thanks again
Lee-Anne

[n_K]

what hospital are you at ? 8.7% is not good, http://www.helper3000.net/d4t/cms/uploaded/_Splith_/Document/input%20dayWhat%20is%20HbA.doc explains more

[Jackie UK]

HI Lee-Anne

If you want to find out more about insulin pumps and how children get on with them in normal daily life, I suggest that you consider signing up for the UK Children with Diabetes Mailing support list. Jeff Hitchcock, who is the owner and founder of the Children with Diabetes websites, mailing lists and message boards set up this UK section of the board when I asked just after the new message board were set up. However, it's very little used compared to the UK CWD parents mailing support list, where there are around 130 -140 members and over 45 famlies with children who are using insulin pumps. Two members of the UK mailing list work for INPUT a voluntary organisation raising awareness of pump therapy in the UK and Scotland . The members of the list can also tell you where some of the hospitals are who have a paediatric pump program, as many hospitals do not have the skills or interest in putting children on pumps. INPUT and the parents on the list can give information to anyone who want to know more about pumps.
We are also having a meeting with DUK in March to tell them of the problems in schools and the lack of good care and pump availability in the UK.

You can find how to sign up for the list on here and if you have problems signing up please contact me again. I can subscribe you myself if you have problems

http://www.childrenwithdiabetes.com/uk/

This is the site for INPUT
http://www.input.me.uk/

Here are is the parents album with some photos of the families

http://www.childrenwithdiabetes.com/people/uklist.htm

Thanks for that, i am interested in finding out as much about this as i can, so if your mum can tell me more that would be great.
Take care,
Lee-Anne

[n_K]

"Two members of the UK mailing list work for INPUT a voluntary..."
:P

[stressedmum]

Thankyou for all the advice.
Re: his HbA1c test, he had it done in West Cornwall hospital in Cornwall and although they didn't explain about it they said that a reading of 8.7 was an excellent reading??? This was the first one that he has had done.

[Jackie UK]

Not sure if you are asking a question or not?

Jackie

"Two members of the UK mailing list work for INPUT a voluntary..."
:P

[Jackie UK]

An HbA1c of 8.7 is an elevated level and your hospital should produce a care plan saying what they are going to do to help to reduce the HbA1c. This is probably an average level for children in the UK but it doesnt make it "excellent", it is really too high. Research shows that keeping the HbA1c at a lower levels can prevent and delays future complications.
The lower the Haemoglobin A1c, the fewer the complications, but the greater the frequency and severity of hypoglycemia. So, there is a therapeutic dilemma and some compromise must take place -- especially in those very young. If your child is young under 5 this may be acceptable. Only you can decided. If your son is 11 then ideally the HbA1c is considered to be too high and your clinic should be advising and working with you about what could be done to achieve this. If you want more advice have a look at the CWD mailing list where there are lots of parents with children the same age as your son.

Jackie Jacombs UK CWD list manager


Thankyou for all the advice.
Re: his HbA1c test, he had it done in West Cornwall hospital in Cornwall and although they didn't explain about it they said that a reading of 8.7 was an excellent reading??? This was the first one that he has had done.

[Jackie UK]

Hi Are you Jamie, Debbie's B son?? Just realised. I just noticed your post about a teenager's website. I'll post the link the UK parents mailing list.

http://www.helper3000.net/d4t/cms/Forums/

Jamie if you want a UK teenager's section on this the messageforum I will ask Jeff Hitchcock to set one up if you think it might be used.

The parents section of the message board is not that well used despite posting and looking in here every so often. Many UK parents post on the UK mailing list which I run.

Jackie Jacombs

"Two members of the UK mailing list work for INPUT a voluntary..."
:P

[n_K]

Yep thats me and I've already got a forum on D4T... although its not used, thanks for asking though ;)
and the site is http://www.helper3000.net/d4t/ (no /forums/ part)

[n_K]

Hi stressed mum, Jamies mum here, if you'd like to eamil me off list, inputpaeds@hotmail.co.uk, I can give you more specific info. Dont accept that 8.7% is excellent! Its not terrible, but its not good wither, Ideally under 7% is what you want.

[Jackie UK]

Yes stessed mum. Contact Jamie's mum if you want more pump info, or registered on the UK parents list. Jamie's mum is a poster on there too



Jackie
Hi stressed mum, Jamies mum here, if you'd like to eamil me off list, inputpaeds@hotmail.co.uk, I can give you more specific info. Dont accept that 8.7% is excellent! Its not terrible, but its not good wither, Ideally under 7% is what you want.

[JenC]

It's good that you're looking at information on pumps - they give both you and your child SO much more flexibility in the way that you live.

You're not tied to certain mealtimes or having to eat snacks - and can live a far more normal lifestyle than being ruled by injections.

I had thought insulin pumps were widely available on the NHS now - if your hospital isn't helpful - find one that's sympathetic. We're now under Bournemouth which has a great pumping reputation and have great support (with visits, phone and email).

Read up the information on pumping that you can find.
You can also read my daughter's thoughts on the subject, as a teenage pump user, Why Pumps Beat Injections (http://www.diabetia.com/Why_Insulin_Pumps_Beat_Injections_for_Alissa.html) .

In the end, you have to do what is right for you, your child and family.