thinking of pumping (warning long post!)

[jacquiel]

Hi - long background info as its my first post - sorry!!
My daughter (16, diabetic since 15 months) is thinking of going on a pump to help her blood sugar levels.
She has had high hba1c levels for ages. Yesterday in clinic it was the highest at 14 :roll:
She has been on multiple daily injections with lantus and novorapid for about 4 years, and is reasonable with carbohydrate counting - they told her in clinic she may be underestimating portions or amounts in food, but have directed her to a better guide to follow.
She was told a pump may be useful for people who 'fail' in looking after themselves in terms of high hba1c etc.
Next step is to tell her dsn that she is interested (saw a different nurse in clinic as ours ws on holidays) and go on a waiting list to try a saline pump and talk more and go for it. (anyone know how long waiting lists are likely to be?)
She saw a few different pumps - the waterproof one, the omnipod, something i cant remember the name of, and the one she liked which ws the accuchek combo.
She also has to see an endocrinologist about not growing (is on 6th centile for her age) - which i wonder if it is diabetes control related - she has been pretty awful for years, but improved this year after having slight bleeding to eyes - gave her a bad shock - she improved and when she saw the opthalmologist didnt need any treatment thank god.
A few years ago they gave her bone age tests in relation to growth but that was normal, anyway - they are revisiting the growth issue too.
I just hope that a pump will be a good thing which will help her get better hba1c and better control. I worry for her that she will gain weight (reading other threads on here..) - she is very self conscious of weight - is short, with big tummy, and has ketones a lot so if her control improves I wonder if like other posters said this will lead to weight gain - i havent mentioned this possibility to her as weight is a taboo subject between us!

 

[sabrinaxxx]

hi my son josh has been diabetic since he was 2 and is now 7 we had a horrid time on the injections joshua absolutley loves his pump and been on it a year and the thought of going back on injections is something he is not keen on at all and as far as i know he is tiny for his age anyway but always had a pot belly lol and he is losing his belly since being on the pump.. he is only on novorapid and as far as i know its the long acting insulin that causes the weight to stay on (i think) which being on the pump is summin thats not needed...

 

[jopar]

There shouldn't be any waiting lists for pumping if the consultant says yes the PCT has to fund the pump, the PCT can't decide how many pumps they will fund in any one year, doesn't work like this if they try this stunt then they are actually breaking the law.. Under the NICE guidelines...

As to the weight issue's In my case it was I wish.. But alas this has never happened...

Some do find that they put on some weight but this settles, but I am sure that some of this weight gain is more based on an increase in food intake with the increased freedom they feel they have..

My eating habits haven't changed with going on the pump, so perhaps thats why I haven't/didn't put on weight?

 

[jacquiel]

thanks for the responses
we should be talking to the dsn on monday, so will let you know what she says, and probably come back for more advice!!

 

[Dollyrocker]

Do bear in mind that a pump is only as good as it's user as a wise forum member told me recently. The omnipod is not widely available yet, there was a thread about it the other day, do a search for it and have a read up on all the pumps available as they all have different functions and wizards

 

[vickiec]

thanx for your earlier reply and support, my son was diagnised two years ago and waited approx6-8 weeks for pump to be funded by PCT but as someone else said the pump is only as good as it user, eveytime my son eats anything he works out carbs say 40grammes puts this info into pump it works out how much insulin you need to take you press ok and it pumps the insulin into you, but heres where the problems start you have to take your BM everytime you take insulin because if it it slightly high the pump works out a corrective dose then you put in how many carbs in food then it gives you insulin [hope your following me], but my son as i said before goes out buys pop doesnt take insulin for this, has a bag of crisps doesnt take insulin for this and unfortunately to keep levels right you have to administer insulin everytime you eat and drink he finds it a chore so today he saw dns and consultant and they have taken him off his pump for three months , it really depends on how compliant your daughter is prepared to be hope this helps, we have our ups and downs and sometimes it tears us apart but we just keep supporting him and hope he will comes to accept his diabetes.

 

[jacquiel]

THANK YOU very much Vickie
i showed Aimee your post and she said - well the nurse said you dont have to neccessarily do your bm every time.. you put your carbs in, and it asks you are you sure..
i foresee issues but would like to try.
She is going to a talk next month at the hospital by someone pumping at the moment. (dont know what part of the country you are in, this is at Alder Hey, Liverpool)
She is keen as she sees it as a magic wand...

 

[vickiec]

matts hba1c wa 14 yesterday aswell and apparantly the machine only goes up to 14 so it could be much higher, when he came home yesterday his bm said Hi so he took a corrective dose of insulin after an hour it was 29.8 so he took more insulin after anhour it had come down to 29.1 so more insulin again after an hour it was 26.5, he had more insulin with tea but by 22.00 it was still 25.5 eventually when he took it at 23.00 it was 14.5, no wonder they get fed up, he got sent home from school today as he was poorly but also wild and his teacher said he was very intimidating, but as for the pump i think they are great and if used properly your daughter will be able to rule the diabetes and not vice versa , and as for weight issues my son has lost four stone in just over a year he was overweight and at first looked great but now he looks painful [ but he thinks he looks great], there are minuses with the pump as matthew said it was a hindrance at night he couldnt get comfortable in bed and sometimes took it off or it pulled off when he was asleep,even though it releases insulin over night hence high bms on a morning.

 

[iHs]

Vickie

have you and Mat talked with the consultant about using twice daily insulin instead of bolus/basal? For the young non compliant and those who want a simplier way of managing bg levels, the twice daily insulins can help save the day.

 

[vickiec]

yes iHs he has gone on twice daily as from yesterday but he has still been out today and bought full sugar coke and he says he wont give this up alongside strawberry milk shakes and i mean byt the litre bottle will his twice daily cover these?

 

[iHs]

With twice daily it means eating carb to balance the insulin's effect on bg levels. Most people eat carb sensibly which Mat is not doing by the sounds of it. He can also use a few units of bolus insulin though as a backup when he wants to overeat.

He needs to be able to chat with other fellas a bit older than him and find out how they managed D while they were the same age. I think you need to be a lot firmer with Mat before he ends up making you ill with all the worry he is giving.

 

[vickiec]

i take it you have read all of my posts about matt since he was first diagnosed he has been a nightmare and torn our family apart and it may not seem so but he is a lot better or should i say not as nasty as he has been in the past, but he is not daft and knows wot he is doing to himself i thought he could give himself extra insulin if he has extras but i wonder if this will become a chore to him and he will refuse to inject himself more than the twice daily.

 

[iHs]

Vickie

Yes I read a lot of your other posts re Mat and what seemed to be manipulation of your caring good nature.

Have you thought about leaving Mat and your husband for a while (go and stay with relatives or friends for 1 or 2 weeks) just to see what happens in your absence? I just wonder whether he will lead your husband the same merry song and dance so that he gets loads of attention or whether your husband won't take much notice and let him carry on until he stumbles over his mistakes.

I think you need to tell him that if he wants to carry on the way he is, then fine, but if he finds himself in hospital with DKA, then it's his own fault and not yours. He may not get any nerve damage at the moment but he will get a wake up call regarding retinopathy and will need laser treatment. Probably then, he will come to his senses (let's hope).

 

[jacquiel]

I think Vickie and me are in the same sort of boat with kids and diabetes.
I have a boy of 13 who couldnt care less and a girl of 16 (and 2 without diabetes)
The girl - who wants to go on the pump - did have a wake up call with retinopathy but was told no laser needed at the moment, and then after a brief improvement while we waited for the consultant opthalmologist appt - during which time she thought she would need laser, she has gone back to her old ways.
Both of my kids know in theory the issues and long term complications, but it doesnt stop them not testing, eating too much rubbish etc. This applies whether me or my husband have them.
We have left it to them but it doesnt make a difference - my daughter had a stage of 'liking' being in hospital because of attention and no school!

 

[vickiec]

i agree with you jacquiel i like you have tried everything nothing works they have a mind of their own and i know if my son has problems then its down to him but it doesnt stop me worrying or caring however much he hurts me,at the moment the twice daily injections are working but it never lasts long and we end up back at square one, but you and me just keep on caring for our kids what else can we do by the way we are from county durham but its really nice to speak to someone who understands
vickiex