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whats the truth?

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bev

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Relationship to Diabetes
Parent of person with diabetes
Hi all,
I am slightly confused by a comment type1sue made on another thread. Her opinion about pumps doesnt seem to match that of the medical world. We are of the understanding that a pump will give so much more freedom than MDI as it will mean that Alex can eat when he wants and to an extent how much he wants. But the comment that was made seems to suggest that this just isnt the case. Everyone that i have spoken to about pumps tells me that it has given them much more freedom and control over their diabetes than they could have achieved on other methods.
Your thoughts on this would be appreciated as i would prefer Alex to know the negatives aswell as the positives. I dont want to paint a picture of something that just simply isnt the case. It is a huge decision to decide you want a pump and i would hate it if Alex felt that it wasnt all that it was cracked up to be!:confused:Bev
 
Hi Bev

I don't want to sound negative but I have to say that despite being frustrated with the number of injections each day I personally would hate to have a pump permanently attached to me. I have thought about it a lot but keep coming to the conclusion that to me it would feel that I could never escape from the diabetes because it is always there. It would also make me feel self conscious when doing certain things, e.g. lying on the beach or going for a swim. Although I'm happily attached to my other half I would also have not liked it when I was dating for people to see that I had this attached to me. Sorry if I sound negative but if Alex has the pump he will be growing into a teenage with this always with him...........that could make him self conscious.

Having said that I think that I would be more tempted if there was a pump that was linked to continous blood glucose monitoring and could make the necessary adjustments, so that it was more like an artificial pancreas, but again personally I'm still not convinced that I would want it attached to me.
 
Hi bev,

Glad to hear alex is feeling a lot better today...and a lot richer...lol🙂

Regarding pumps...Although Nathan at this moment wont consider this as an option. Any one I have spoken to who either have diabetes knowledge(DSN), or those who are already using them have only positive things to say about this method.. They all feel they have regained their life and freedom, better control over diabetes, less hypo's, and generally feel much better physically and mentally.
The pump delivers insulin to your body in a way that much more mimics that of a natural process.
I have looked on a few web sites in America..and it seems we are way behind them on this nearly all children are started of on them. Again many of them feel much better using them.
Heidi
🙂
 
I agree with some points AJL makes, having to disconnect, but still have a canula showing when swimming or during other activities would cause an issue or two for me now, and I think a teenager might well have similar issues.

My understanding is that a standard pump is set to deliver a continuous volume of insulin, and this can be over ridden if you eat a larger meal than your background is set for.

The real turning point for me would be when we have the artificial pancreas e.g. constant monitoring linke to the pump to self regulate the insulin we need.

The fact that at least one pump manufacturer is owned by a meter manufacturer must mean this is somewhere soon?

On the stigma side, I guess it also depends on how you'd act when injecting, pleasing 'yours frustrated' otherwise known as that nurse by going to a dirty public toilet or doing it at the table with as few people (if any) noticing. Of course as Alex gets older he will have more of this control himself and won't need (if indeed he does now) reminding to do his injection with a meal. Oh, oops, I still need reminding from time to time 🙄

When entering a new relationship the issue of diabetes must raise its head very soon, so that if nothing else your partner doesn't collapse the first time your test or inject, but also so they don't think you're a drug user.. of the non-prescription kind!

So on balance, it is very much down to the individual, of course management must come first, but if the self esteem of the user is knocked because of wearing a pump 24/7 and of the implications/impact of that, then that will have a negative impact on their overall well being. So injections could well be the better option.

From the technical perspective a chat with the DSN, perhaps asking her if you can meet another younger or older pump user to discuss how they find wearing a pump in the 'real world' might be a good call.
 
Which thread is the comment on bev? My understanding is certainly that you can eat what you want when you want -- this is due to the on board computer which will help calculate what insulin is still active and for how long (this is with you having typed in bgl). There is the continuous 'drip' of insulin which acts as a basal, and then there are a number of different types of bolus actions to take -- sometimes as quick one-offs, and sometimes as slower release appropriate for slower digesting foods. What the pump is much better at managing are the swings: if a hypo is approaching, the insulin is suspended; if a piece of cake is eaten outside a meal, the spike can be better managed (through the introduction of a higher basal rate temporarily etc). And the whole thing is timed so that sleeping in, for instance, is possible again. I'm sure that you have to eat sensibly -- but so should everyone! It's certainly not a free licence, but is anything?! A good diet is the right thing to do in any circumstance....?

There is no doubt that pumping affords better control, it's just whether the advantages outweigh the disadvantages. For my son, the advantages are clear: he won't have to go to a medical room to inject for lunch; he won't have to refuse a cupcake from a friend; he won't have to deal with the same swings; he will be able to sleep in; he will be able to have a sandwich when he gets home from school without trying to figure out if his lunchtime bolus has run out enough or whether he's far enough from dinner, and whether he wants another injection....etc! The physical disadvantages have certainly occurred to him -- but when things start to get intimate for him I'm sure he will have to pass through another stage with things and see what he wants.

The one I can really see being difficult is the feeling of never leaving diabetes, always being 'hooked up'. But I have to say I've done a lot of reading around about this, and I've never read that as any concern of anyone of any age. The physical mechanics of it just seem to disappear, and the flexibility a pump offers seems to counteract virtually everything.

What did Alex think when he saw them in action in Hoburn?
 
The following was written by type1sue under the heading of 'capping insulin' !



have no idea where people get the idea that setting a limit on carbs leads to unhealthy relationships with food
I love food I have used MDI for at least 30 years. It was a bit hit and miss before blood testing but hey it was done by many people.
Personally I eat a great verity of food and am a normal weight and hight.
I have never had DKA or ever been admited to hospital due to my diabetes except at diagnoses.

Bev if you honestly think a pump is going to allow Alex to eat what he wants and when he wants you are sadly misguided.
I am also aware things have moved on from the 60/70's. If you did some research you will find that the more informed do know that carb restriction/moderation is the best way to control diabetes be it type 1 or 2.
There have been many news articles and medical notes published on this aspect of controling diabetes.

Personally I am sick to death of every time I make a point you throw it back in my face in a derogatory way.
Best wishes to you and young alex for his future I doubt I shall bother post here any more.


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Yesterday, 08:24 PM
 
Hi Bev,

As a recent convert to pumping my advise would be that you and alex view the pump purely as a more accurate insulin delivery system rather than anything else. For me it didnt suddenly open up a new world of things i hadnt been able to do before but just made it far less stressful to do normal things!

Insulin can be delivered in more accurate doses and i personally feel the effect more quickly. I have never capped my carbs and when on MDI frequently used to need 20 odd units as a bolus. I just split the dose into 2 injections and tested and hr or two later. I think it comes down to common sense and learning your own (or in your case Alex's) reactions to different types of food. (i still cant cope with porridge, pump or no pump!!🙂)

With the pump my insulin requirement has come down as more of the bolus is absorbed than on injections, so i now rarely go aove 8-10 units. And i find the results of the insulin i take are far easier to predict, so far fewer random hypers/hypos due to insulin pooling etc.

With regards to carb limiting causing a negative relationship with food i would say this is a very personal thing which would differ hugely between individuals. For me a regimented diet wouldnt be an option, i would ultimately resent my diabetes and those around me who can do what they like, however others i spoken to who eat the same volume of carbs for each meal like the fact that they dont need to think about dosages and calculations etc for every meal.

Diabetes is so individual and personal that you need to take all the advice you get (from other diabetics and the hospital) and find what works best for Alex. And this may be vastly different from some people who swear by their own regime. Its a play off between good control and quality of life, and somewhere there will be a happy medium for Alex that gives him both.

If you or alex have any questions about moving onto a pump id be happy to share my own experiences so far (good and bad!). Its a scary enough decision at 25!
 
Viki,
Thankyou so much for your detailed account of using a pump. It is refreshing to hear from somebody who can give an honest unbiased account! To be honest, i never thought the pump would be a 'magic' bit of kit. I just needed to know that it would at least be of some benefit - and it seems it is in your case. Thanks for your offer of help with any future questions - you may be sorry you offered though! lol.:D Bev
 
Bev,

I believe in the sentiment that a pump will mean very different things to different people. It seems to be such a personal thing.

For me, despite aggressive work trying to tackle a high HbA1c despite all the things I tried to do with MDI's not working, a pump is a great option to have, and I am quite happy with the thought of it. I can completely understand anyone who may not share that opinion, it is one I have developed over time. What works for some, may not work for others! I look forward to the flexibility the pump I hope will offer me. Like Viki, I would be more than happy to share with you both, as long as I dont bore you to sleep !!!😉
 
Hi Bev,

I have to agree with Sugarbum that the pump will mean different things to different people.

I have been on a pump for just over 12 months now and before that was on MDI with between 5 and 7 injections aday which to be honest was doing my head in and my control was quite poor.

My DSN had mentioned the idea of the pump and suggested that I do some research and see how I would feel. I searched all over the web and came to the conclusion that changing the canula every other day was much better then the number of injections I was doing. However, I was very worried about sleeping with the pump attached as I shared my bed with my two youngsters and was afraid they would catch the tubing, and also when out playing with them.

I needn't have worried though as they never caught the tubing and as I wear mine on a belt round my waist my daughter uses it as a step when climbing up me lol.

I was apprehensive about wearing it all the time and it being uncomfortable but within 2 days I forgot that I was wearing it. I also worried what people would say when they saw it and again I needn't have worried. I am a teacher and it will go off 2 hours after my last injection to remiond me to do a blood test. The bleep initially causes confusion to the class and when I take it out to shut it up I get lots of questions and end up showing the canula. Rather then being horrified they are intrigued and it prompts lots of awareness and disperses some of the myths they have.

When I first went swimming I was aprehensive of having a third nipple but no one seemed to be noticing it and now I forget about it, to the point where on occaisions I have nearly worn it into the pool and shower!!

As you can tell I am pro pump and feel that although there is still a long way to go, this is a good thing.

I hope this is of help to you and Alex.

Andy
 
I think that's a big help to everyone contemplating a pump Andy, thanks for posting about your experiences🙂
 
Hi all,
Great advice again! Especially your insight into having/wearing a pump Andy! I bet the children love having a nose at your pump etc.. And the thought of your youngster using it as a step is so funny! It is amazing that you forget your wearing it - i had never thought of that - i presumed it may feel a bit cumbersome? Bev
 
Having read through it all the replies, I think we are all different. In the end it is Alex who will or will not be using the pump. He is a lively inteligent young man with a very supportive mum.

It is good to knoe the pros and cons of things. At the moment a pump is not an issue for me as I am on pills. If it becomes an issue at least I can come here and see what veryone has to say.

Technology is moving on, and Alex is still young, so who knows, it could be he is one of the first to have a new less obtrusive generation of pumps?

From recent experience, people like the DSNs who are used to the day to day management of diabetes are probably among the best people to talk to and other pump users.

Whatever decision is reached, I wish Alex and Bev success with it
 
Differnt things for different people...

At the end of the day - I have read so much good stuff about pumps - I am going on one as soon as I have had bump. I have done an enormous amount of research about this – over three years worth!! – and have had all the reservations about feeling more 'diabetic', being permenantly attached etc etc – but at the end of the day, if it reduces long term complications and gives me a much better HbA1c, then that is the most important thing. I have also spoken to many people on pumps and seen their results - and they are what I want!
Also - my theory is that I can try it - if I don't like it I can always go back to MDI.
I have now done the required dafne course, (will post separately about this!) and am good to go! So come on bump...!!

Bev - on our dafne course it was pointed out that the most damage done to Type 1 diabetics in terms of long term complications is during the teenage years which Alex is heading towards. I know my hormones caused chaos during this time and i wasn't particularly a 'good' diabetic then either – if I had been on a pump I would have had so much more control. MDI didn't even exist then!
I have had excellent HbA1c results for years - but have still suffered retinopathy - and I believe it is a kickback to this time.
I am now with a pct that loves pumps (I was previously in lambeth which wouldn't fund one) and am so happy.

Pre-bump I also did an awful lot of sport which caused chaos too with bs levels depending on what sort of sport I was doing - this will no longer happen with the pump. Just have to get used to shoving down my bra!! :D

Like I say - it is different for everyone - but Alex an always try it for 6 months and go back to MDI if he hates it?? Nothing ventured nothing gained...
 
Admin, thanks for your input. I had read a little research suggesting that complications can occur during the teenage years due to poor control and hormones. It is for this reason that i would prefer that Alex was on a pump. Luckily he actively wants to go on one! So thats half the work sorted out- the rest is to come and i am sure we will have some very eventful times when he is first fitted - but it can all only be for the good as far as i am concerned. At least i can get some great advice/info off this board!

Admin, how is little baby bump? Not long to go now is it? Hope your feeling ok and looking forward to hearing when little one is born! Its so exciting!:DBev
 
bev said:
It is for this reason that i would prefer that Alex was on a pump. Luckily he actively wants to go on one!
Click to expand...
That's brilliant that Alex wants a pump and definitely more than half the battle done - we can compare notes!!

I am now 34 weeks - so only 6 to go - !! Yikes!! Only 4 if i am induced at 38!! - but OB - happy with baby size and see no needs to induce early so far! Have another scan @ 36 weeks so hopefully bubba still right size then!
Diabetes consultant is still assuming that I will be induced at 38 weeks and l haven't corrected him. He seems to think there is one rule for all! Pah!
 
Admin said:
That's brilliant that Alex wants a pump and definitely more than half the battle done - we can compare notes!!

I am now 34 weeks - so only 6 to go - !! Yikes!! Only 4 if i am induced at 38!! - but OB - happy with baby size and see no needs to induce early so far! Have another scan @ 36 weeks so hopefully bubba still right size then!
Diabetes consultant is still assuming that I will be induced at 38 weeks and l haven't corrected him. He seems to think there is one rule for all! Pah!
Click to expand...

When my big boy was born they tried to tell me he was early, he came into the world weighing 7pounds 5 ounces! Baby wont come until it is ready, and is sure to be happy and healthy and very loved!
 
Oooh its getting closer and closer - i feel so excited on your behalf! When he/she is born make the most of those precious first few minutes when you meet him/her! You will feel the most wonderful feeling you have ever felt - and you need to savour every single second of it! It is an indescribable feeling - but once youve felt it you will know what i am talking about - all mums and dads know what i mean!
My second daughter Hannah was born 4 and a half weeks early and she weighed 7lb and 6ounces! I think she would have been 11lb if she had gone full term!😱Bev
 
Cheers Caroline and Bev -
Bev - you sure you didn't have gestational diabetes??!! - LOL!!! Did Hannah come naturally?
At the mo - I am in line for an 8lber - which is fine - my hubby was as was my brother (both about 8.5 lbs) - I was 9lb 6oz as I was 3.5 weeks late - warm and comfy where I was! LOL!
Fingers crossed!
 
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