MDI -v-PUMP

[stoney]

Hi Everyone, not been on here for a while. James is OK just been busy at home and work. I have some good/or not so good (well according to James anyway) news. Went to Clinic last Monday James doing very well and was told that they are introducing the Accu Chek Combo Pump and wondered if James was interested . I have said all along that we would want to be borne in mind if they ever did introduce the pump but James was very apprehensive when it was mentioned. Anyway there is going to be a group discussion with a Rep coming up at the end of this month and we have been invited to go along. James is still not happy about this but will go along for the meeting. I must admit I was very keen on the idea, BUT, I have done some research for myself (without James being aware) and I too am a bit apprehensive about whether it is the right thing for him.

There are sooooooooooooooooo many pros and cons and knowing James I don't think he would get used to being attached to something 24 hours. At the moment, to look at him you would not know he was diabetic, but with the pump attached 24/7 he said everyone would know and although all his mates know he is diabetic, it nevers interfers with his day to day life, but changing for games, playing football, swimming it's there for everyone to see. This is what he does not want.

So any support on this would be appreciated.

Yvonne x

 

[leggott]

pumping is certainly not for everyone and you are wise to think about it carefully.

Both my kids are on pump therapy and I find the ease of administering insulin invaluable and personally would hate to go back to MDI because it had so many limitations for us and we were struggling to get the control that I wanted. My husband on the other hand, who has been type 1 for over 25 years has no interest at all in pumping himself and achieves excellent control without one. He too would hate to be 'wired' up as he calls it and since he copes well with injections doesn't feel the need to change,

If your son has good control and is happy with the way things are then there doesn't seem any immediate need to change things. If on the other hand you feel that a pump would be better in terms of control then it may be beneficial to do a trial so he can live with one for a while and find out whether it is as intrusive as he thinks it is. Most people don't find this to be a problem and certainly the advantages outweigh the disadvantages.

You also need to bear in mind that the process of getting a pump is much harder for adults than children and I seem to recall that from age 12 the process gets harder. Not 100% sure of this but hopefully someone else who has more experience of acquiring a pump for an older child will be along later. if it is the case then it may be worth pursuing this now and going through the process which can take many months, as your son may change his mind later on. Even if they get the funding in place you may have a little time to delay things and even not go ahead if it really isn't for him.

 

[sugar2]

I am not a young boy, and do not care what other people think....but, trying to imagine being concerned about being seen, the only time it would be unavoidable is when he goes swimming. This is because he is a boy, and although he would not have the pump on, he would still have the cannula on his stomach (looks like a plaster). This isn't an issue for girls, as swimming costumes would hide it.

Other areas of life, school, playing football, you/he may need to do a little bit of needle work. I have sewn some discreet pockets onto the inside of some of my clothes (actually, they are baby socks) this keeps the pump inside my clothes and away from public view. To be honest, i usually have the pump in my hip pocket at the moment....not exactly a smooth silhouette, but not the end of the world.


I think Leggott hit the nail on the head. If MDI is working for him, and giving hin the control you are happy with, then why change. For me, the pro so outweigh the cons, that the minor inconveniences are just that, minor. I enjoy the flexibility. i was forever going hypo, because I did some unplanned exercise (like shopping!) and it would send me hypo. If I was a young boy, I think I would deal with this by eating some carbs, but for a weight conscious middle aged woman, this is not good! I hated feeding the insulin..and because I seem to swing for OK to low very quickly, without much exercise, it was getting silly.
This is a recent development though, MDI worked well for many years..and when it was, I would have stuck with it. It was having children that upset the boat!

 

[stoney]

Thanks for the constructive replies.

My fear is that if he decides not to go ahead now, and later on when he is more independent (and maybe, just maybe control is not so good), would he have trouble in applying for a pump on the NHS then.

After saying all this in the end it is really down to him as he is the one having to do all the injections daily.

I will keep you posted and thanks again for replies :wave:

 

[Pneu]

Stoney.. that would be my only comment.. while you don't want to rock the boat if all is well as he reaches adulthood the chances of him getting a pump if his well controlled are ever decreasing! I would love a pump but have been told point blank that my PCT will not fund it for someone with my control on MDI..

 

[SandraR]

Hi Yvonne

I have a 15 year old who has had a pump for some time now. He was very apprehensive at first and whilst I did all the investigating, he just dug his heels in and said a flat 'no' every time our consultant suggested it to him. He liked the idea of being able to eat what/when he wanted, but it wasn't enough to pursuade him. I backed off completely because a pump is something that the young person has to want for themselves. I stopped mentioning it altogether.

My son's refusal to consider a pump came down to his fears over the insertion of the infusion 'set'. Luckily for me, my son was in touch with another lad on a pump and completely unbeknown to me, the friend demonstrated the set insertion via webcam. I was very surprised indeed when my son suddenly declared out of the blue that he wanted a pump!

My son found it very easy getting used to wearing the pump. He's dropped it a few times, which tugs on the cannula but (apparently) that's not at all uncomfortable. He just unclips it for some sport such as rugby, but leaves it on for most other activities. For swimming, if the set is placed well below the waistline then swim shorts usually cover the set and even if exposed, it only looks like a round elastoplast.

The benefits are just too many to list. Often, its the little things which make the difference - like sitting in the Cinema with friends and being able to slowly eat through chocolates or popcorn and just press a few buttons on the pump to deliver what is needed. After sports, we can turn the basals down for the rest of the day (and night) to prevent those nasty hypos which occur after major activities.

Sometimes, my son's friends have pointed out to him that his tubing is dangling down below his school sweatshirt, but to be honest he no longer cares about it. He wears his on a soft belt around his waist. He tried wearing it in a pocket or clipped to a waistband - but found that annoying when dressing/undressing and going to the bathroom. Basically, he's just a lazy teen and likes the 'fit and forget' way of wearing it.

You obviously have to consider the pro's and cons of it for yourselves, but I just thought I would jot down these few lines to demonstrate that from a wearability point of view, its probably less of an encumbrance than you might imagine. Plus, I am sure they will get neater and more convenient as the years go by.

Hugh hasn't had an injection since August 2009! That's an awful lot of jabs he's avoided. Just two set changes a week. There's no way on earth he would agree to go back on injections. His HbA1c hasn't changed much. Its good, but it was good to begin with. Possibly the better control is also balanced with eating an unrestricted diet. What it gives is freedom and flexibility.

There are loads of YouTube videos of people inserting sets - might be worth a look through to get an overall picture of what it is like.

 

[Cheryl]

I too hated the idea of a pump & though my control was slipping, refused point blank to consider it for a couple of years. i eventually agreed as my control got worse & worse. After 2 1/2 years on it, I am very happy to have it.

I am an adult & was not diagnosed until aged 26, so I can't begin to imagine what it must be like going through childhood with diabetes, wanting to be the same as everyone else but not being able to.

It does have pros and cons, tubing can get caught on things, but I've never ripped my cannula out. Inserting the cannula doesn't hurt any more than an injection. Swimming is fine as the previous poster said and the ability to increase/decrease basals & also bolus whenever you like is a major plus.

I believe that if you qualify for a pump under the NICE guidelines, you should be able to choose the pump which is best for you, not be forced to take the one that your hospital prefers. I have a medtronic paradigm, which my clinic didn't really want to give me because they favour Accu Chek or Animas, but they gave me what I wanted when I set out my argument as to why.

A popular pump with kids (and some adults too) is the Omnipod. It has no tubing & is like half an egg sitting on the skin. It's operated through a remote control so is hidden away unless the user is wearing tight clothing or has it on their upper arm and is wearing a t-shirt. You could try suggesting that one then lobbying your hospital for access to it if James is more receptive to that.

Input is an organisation which can give advcie about getting the pump that you want over the pump that the clinic wants to give you if you're having probelms. Google them, I think it's input.me or similar.

 

[stoney]

Thanks Everyone for your replies.

James is stll adamant he does not want a pump but today is 'D' day .We are after school going to the hospital to go through a discussion about the Accu Chek Combo. (In fact he said could we go without him). I like the idea of the Omnipod where you are not attached to tubing, but we shall see what this meeting is about and take it from there.

Thanks Again for the replies

Yvonne

 

[elainechi]

i can.t belief it ! my daughter can.t get a pump cos her bs are too high. why are they high because she snacks all the time and can.t be bothered to take never ending injections

 

[CarbsRok]

i can.t belief it ! my daughter can.t get a pump cos her bs are too high. why are they high because she snacks all the time and can.t be bothered to take never ending injections

I suspect your daughter would have a better chance of a pump if she did inject for her snacks and carb counted properly.
The fact she isn't doing this is a very large black mark against having a pump. She has to prove she is trying to control her diabetes and has the knowledge to be able to use the pump.
Snacking all the time is not good for anyone let alone someone with diabetes
Does your daughter understand that a pump is not plug and play and involves a lot of very hard work with lot's of testing as well?
Once she can prove she is prepared to do the work and comply then a pump might be considered for her.

 

[elainechi]

her snacking has always been and snacks usually consist of fruit and snacks. its ashame they dont have a pump for just short acting insulin and just have to have a daily long acting insulin injection. that would be great .

 

[CarbsRok]

her snacking has always been and snacks usually consist of fruit and snacks. its ashame they dont have a pump for just short acting insulin and just have to have a daily long acting insulin injection. that would be great .

A pump only has short acting insulin in it.
Your daughter would be no better off using a daily long acting insulin and using the pump to bolus, esp if she isn't counting carbs or injecting for them now. There's no reason to think she would bolus for them if she had a pump.
A pump costs almost £3,000 plus the £1,200 a year for consumables. So as you can see no consultant will waste NHS money like that when a complient youngster is doing all the right things and still not getting good results they would obviously be offered a pump.
Someone who doesn't use their pump correctly will end up DKA very easily and it's the consultants job on the line if something happend to your daughter due to non complience.

If your daughter must snack then the simple solution is to either use a different type of insulin with a longer profile to it or use carb free snacks.

 

[elainechi]

my daughter test x5 dayand injects at laest 6x a day. she is can carb count too. she has seen the pump rep who said she could even trial it for 3 mths. but she is a teenager and always eating. she doesn.t like injecting in town for a snack or for even an apple. her ratio at the mo is 1 unit to 5g cho. thus high bms if she misses an injectio on a snack. i think she would you a pump correctly. ske is aware of dka and im well trainned to spot the signs. as to the cost..im thinking of future expense for the nhs! it was not her fault to be t1 and i think she should be given the chance.

 

[CarbsRok]

my daughter test x5 dayand injects at laest 6x a day. she is can carb count too. she has seen the pump rep who said she could even trial it for 3 mths. but she is a teenager and always eating. she doesn.t like injecting in town for a snack or for even an apple. her ratio at the mo is 1 unit to 5g cho. thus high bms if she misses an injectio on a snack. i think she would you a pump correctly. ske is aware of dka and im well trainned to spot the signs. as to the cost..im thinking of future expense for the nhs! it was not her fault to be t1 and i think she should be given the chance.

Just had a quick read of your other posts regarding your daughter, A1c 11% and running at 20 a lot of the time :shock:
That is why no pump for your daughter. DKA is very fast on a pump. So it's for her own safety she does not have a pump. Any consultant who offered a pump to your daughter with her record would be had for medical negligence.
Yes I know it's not your daughters fault she has type 1 diabetes, as far as I know no one has said it was
Your daughter will be given a chance of a pump when she can prove to all concerned she can do what is required to look after herself.
At the moment she is going through the denial stage (all teenagers do this) Once acceptance comes along things will improve

 

[elainechi]

thank you carbsrok. lets hope that she comes out of denial soon. she s so happy when bs is normal and so upset when it goes wrong.she gives up so easily. i just want to make life easyier with minimal future complications x

 

[stoney]

WOW was very impressed with the Rep/Diabetic Nurse from Roche who talked through the Accu Chek Combo Pump. There was a turn out of 12 children with parents, the room was full. There was also a young lad (15) with his parents who came along from another clinic in the area who has been on the pump for a year. I started by asking him several questions (as I had done quite a bit of research myself) then he was bombarded by the other parents (poor lad). At the end of the Reps discussion, I got in there quick to speak to the lads parents on a one to one and James sat and spoke to the lad, who showed him the cannular, pump and said he would not want to go back to MDI's again. We have been given a lot of reading matter and an information disc of real life stories (which I will be looking at later) James came away on a more positive note and as they are only putting 2 patients on at a time (as we believe there is a lot of commitment on both sides when first going on it) I asked James to seriously look through the information, and if he is interested (at the end of the day it is his decision) then I will get the ball rolling by contacting our DSN next week.

I also think that James has the added advantage of carb counting already as I think quite a few in the room were not at that stage yet.

So watch this space.
Bye for now from an anxious (but also excited) Mum

Yvonne

 

[Jen&Khaleb]

her snacking has always been and snacks usually consist of fruit and snacks. its ashame they dont have a pump for just short acting insulin and just have to have a daily long acting insulin injection. that would be great .

What you want to do is called the untethered method. You continue to take a long acting insulin and only use the pump to bolus. This is something that isn't common but is done. I understand how hard it must be with snacks or someone who grazes to eat. Bolusing too often can lead to some nasty hypos from insulin stacking.

 

[Isabel73]

Hi Yvonne,

My son - also James! - is 11 and was diagnosed with Type 1 almost 8 years ago. For the last 4 he has been on novorapid/lantus with carb counting and as his HBA1Cs are a little on the high side - 7 to 8 - it was suggested he try a pump.

While I'm in favour of anything that will improve his control, I too am apprehensive about it. While he hates his injections, the moment they are over they are forgotten about, but I am worried that having the pump will be a constant reminder. He plays football 3 times a week and as he is the goalie he takes quite a few balls in the stomach!

Also, kids can be cruel and I would hate him to be teased because of it, so we too are undecided. We're due to attend the meeting about it soon so hopefully that will give us more information.

Let us know how you get on.

Isabel

 

[stoney]

Hi Isabel

James had a few problems last week with his BG's dropping quickly we have never experienced this before he never seen the school nurse so much since he's been there . He has been going through exams/course work for impending GCSE's and thought with the stress they would be higher. He was allowed to look over his english exam again as he said he could not remember whether he had finished it or whether it made any sense (bless him). His DSN said that it can sometimes have the opposite effect of dropping quickly when stressed. Although James says he is not really stressed with the work I think he was more stressed with the BG's, as at this age now he seems to be more concerned about passing out in front of his classmates. He is back on track again now with a bit of tweeking again here and there.

With what has happened with his BG's I said I think the pump would be the answer to which he replied, YES I will have the pump but please don't mention it anymore. :roll: Although all his mates know he is diabetic and the only one in his comp school at the moment (can you believe that) it's not in the forefront and no-one would know by looking at him, but with the pump attached, there it is staring you in the face when it comes to changing for games, swimming and even in football they exchange tops and reading between the lines, I think THIS is the problem whilst going through his teenage years.

I have spoken to his DSN and we do have another clinic in April where we will discuss the pump again then. His HbA1c is always around 7.4 and copes with his MDI's and like you said once they are done they are forgotten about. He too plays football, training once a week and a match on Saturday mornings. He never seems to manage to play a full game though these days , as he is always too worn out.

Let you know more again soon.

Yvonne

 

[iHs]

Hi

James can easily remove the pump when playing games, football etc. He doesn't have to wear it 24hr a day. With regards to other kids seeing it, that will be if its attached by its clip to his waistband. Loads of blokes just shove it in their pockets. The best way though is to cut a corner off the inside pocket in a pair of trousers and just thread the pump tube through that and then attach it to the infusion set. Its more or less invisable then..............He will have the bg remote for it and you can easily adapt a mobile phone wallet to put it inside. Accu chek also do a skin for the Combo/Expert meter so no need for the case thing...