which pump????????

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clair

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I am thinking about asking if my 12 year old daughter can go on the pump due to poor hba1c in last 12 months, since she was moved onto the basel bolus regime. Also she has lost the ability to wake her self up at night if she gets low and as a result has had seizures.
I have read a small amount about the Paradigm Veo and its constant blood monitoring. Does anyone have any experience of this pump or any others which have constant blood monitoring.
She has had diabetes since she was 3 and has always had good hba1c results (7's and sometimes even in the 6's) but in the last year things havn't gone so well and her hba1c has now crept up to 9.
Any advise would be welcomed.
Thanks, Clair.
 
clair said:
I am thinking about asking if my 12 year old daughter can go on the pump due to poor hba1c in last 12 months, since she was moved onto the basel bolus regime. Also she has lost the ability to wake her self up at night if she gets low and as a result has had seizures.
I have read a small amount about the Paradigm Veo and its constant blood monitoring. Does anyone have any experience of this pump or any others which have constant blood monitoring.
She has had diabetes since she was 3 and has always had good hba1c results (7's and sometimes even in the 6's) but in the last year things havn't gone so well and her hba1c has now crept up to 9.
Any advise would be welcomed.
Thanks, Clair.
Click to expand...

Hi Clair,
Sorry to hear your daughter is having problems :( It sounds to me as if her basal is wrong or it does not suit her needs. Can you or your daughter do some night tests to see what is going on? Has your daughter been shown how to carb count and dose adjust? If not that is the 1st step to learn before a pump is even considered.

The pump you are talking about has the ability to use CGM (continious glucose monitoring) But does not on it's own monitor blood sugars. That part (CGM) is not covered by NICE so very few PCT's will cover it. All the pump does is deliver insulin at the rate you ask it too.

Does that make sense?
 
Hi Sue, thank for your reply. Yes we have been on carb counting courses and know all about adjusting insulin doses. We seem to do everything by the book but things are just so erratic sometimes. We have a really useful book from accu chek which has hundreds of pictures of portion sizes which is a god send when she is eating things that don't come out of a labeled packet. She has recently been given a new machine for blood testing called the accu chek expert. Its seems good as it helps to work out insulin dosages based on the carbs and the amount of insulin still in her system. It all sounds like things should run like clock work but it doesn't quite work out as good as you would expect. I am putting it down to differing activities each day ie. dancing, swimming, playing out with friends etc.. also she is starting to go through puberty, which I suppose could be a big factor. The scary thing for us is the hypos at night. I check her late at night and wake her to top her up with something if she is about 6 or below. If I didn't do that she could possibly go too low but sometimes she will go the other way and be on the high side in the morning. I would like to try and leave her alone and see what happens but if she fits it is just so horrible that I don't want to risk it. On the nights that she has fitted we have been lucky that she has been in a room with her sister, who has woken up and alerted us. I makes me feel sick to think what could have happened if we hadn't found her. She is in a room on her own most of the time so we have a baby monitor next to her in the hope that we will hear her if she starts to fit.
I do check her blood in the middle of the night quite often but there is just no noticable pattern. This is why I like the sound of the Paradigm veo as it would alarm if she got low during the night.

I don't really know anything about pumps, I am just trying to find a better way of looking after her. She has already developed Hypothyrodism and I am so worried about her having other complications in her life as she has had it for such a long time.

Clair.
 
Hi Clair,

My 2yr old is on the paradigm veo pump, we have used the continuous glucose monitor/sensor with it when she has been unstable, it didn't come with the pump, the diabetic team arranged for its use and my daughter wore it for 4 days. Allowed us to see exactly what was occurring round the clock and some of her basal rates were changed because of what it was showing us. It was amazing to watch it recording her BGs, and seeing what was happening, which we weren't previously aware of.
It is available again should we need it but only for short periods to sort out any ongoing problems. Other than that it is just regular BG monitoring with the veo. To be honest, certainly for our young daughter, it would not be nice to have to wear this sensor all the time and we had to avoid things like bathing and be careful when dressing so as not to disturb it, we had several layers of tegaderm over it to keep it in situ!
The pump has been a bonus for us once we got used to it and allows much more flexibility with diet and regimes.

Hope that helps a bit.
 
Thank you for your reply. I have to say I feel a bit disappointed now. I thought that CGM would be a huge advantage in long term good control.
I suppose we just have to weigh up the pros and cons. From what I understand the pump does basically the same as the regime she is on now only the insulin is administered through an injection at the moment. She has flexibility now, she can eat when ever she wants to, she just has to inject. The advantage of the pump is no injections but she would have to get used to wearing a plastic object at all times. Also how ofter does the tube need changing and is that painful?
:confused::confused:
 
Hi Clair,
If your daughter did not have the fits before going on to MDI and the insulin is different than what was in her premix, then it points to a problem with the type of insulin she has.
Pubity does mess up numbers big time yes I agree. But fitting and losing hypo awareness is not part and parcel of it.
Perhaps a talk with her team might be in order.
If a pump is refused or no change of insulin, then I would if it were my daughter, ask for a referal to another clinic. This site is very helpfull.
http://www.input.me.uk/
do check her blood in the middle of the night quite often but there is just no noticable pattern. This is why I like the sound of the Paradigm veo as it would alarm if she got low during the night.
Click to expand...
The advertising of the Veo imho is very misleading 😡 The pump does not alarm when the wearer goes low. The pump has no way of monitoring blood sugar.
It's the CGM which does this. CGM can be bought without prescription though.
The one with the best reputation is the Dexcom 7
http://www.advancedtherapeuticsuk.com/home

Hope this helps
Sue
 
Hiya Clair

The pump is a whole different regime to MDI what your daughter is on. It will indeed change her life and yours as a family, the freedom it will give you is amazing, its hard work to begin with but we wouldn't change back for love nor money.

It is unfortunately a proven fact with studies taken that most children do not wake up when hypo at night. If a child does then that is deemed to be lucky. Most of my friends night test and always have done. I think if you don't night test then it needs to be an informed choice ie you need information as to why you do and why there is no need to.

We have used the Medtronic pumps for over 4 years. We now have the VEO and we have full time funded sensors (the attached CGM). It does and can with understanding and knowledge, change things for the better. It is proved that using them full time can lower the HbA1c and you can react to what you see using the sensors.

Medtronic have just brought out their latest sensor which is allegedly proved to be 98% accurate with hypos. We are trialling a box of them in a few weeks so can report back then. So far what I have heard and I have a few friends using them, that they are absolutely fantastic.

A pump is nothing like being on MDI. There is no long acting insulin used, it is just Novorapid or Humalog. The back ground insulin is replaced by novorapid being delivered constantly by trickling in over a 24 hour period. You have to set up different rates of how much is trickling in. For example at 5 am to 9.30 am my daughter has 0.95 unit trickling in per hour yet at 9.30 am it pulls right back to 0.10 unit per hours. She has 9 different rates throughout the 24 hour period and you can tweak it when you start seeing patterns of highs and lows.

On top of that you then give novorapid through the pump as well (all from the same reservoir) for carbs eaten.

It is easier to control levels as to what food does. I know that for Jessica when she eats pasta she spikes about 5 hours later. You can set up an bolus of insulin to cover that food so that it deals with that spike.

Take a look at the INPUT website, they have lots of info on pumps and also the www.childrenwithdiabetesuk.org site which has lots of info. On the Medtronic site there is a pump school video to watch which is great.

Getting funding for the sensors is getting harder but some PCT's and even GP's are still funding them.
 
Pumper_Sue said:
The advertising of the Veo imho is very misleading 😡 The pump does not alarm when the wearer goes low. The pump has no way of monitoring blood sugar.
It's the CGM which does this. CGM can be bought without prescription though.
The one with the best reputation is the Dexcom 7
http://www.advancedtherapeuticsuk.com/home
Click to expand...

This is true. It also has a low suspend cut off. If the sensors says the levels are say 3.0 or 2.8, whatever you put programmed the pump, if it reaches that level on the sensor readings then the pump automatically suspends for 2 hours or until user intervention.

There are lots of alarms for high levels, lows levels, dropping and rising rates but you have to have the sensors (CGM) with the VEO for this to work.

Most children are ok with wearing sensors, even the young ones I know. They are getting better with their accuracy as well. 🙂
 
clair said:
Thank you for your reply. I have to say I feel a bit disappointed now. I thought that CGM would be a huge advantage in long term good control.
I suppose we just have to weigh up the pros and cons. From what I understand the pump does basically the same as the regime she is on now only the insulin is administered through an injection at the moment. She has flexibility now, she can eat when ever she wants to, she just has to inject. The advantage of the pump is no injections but she would have to get used to wearing a plastic object at all times. Also how ofter does the tube need changing and is that painful?
:confused::confused:
Click to expand...

The CGM is a huge advantage if you afford it go for it.
The pump is so much better than MDI as well. With MDI once the insulin has gone in you can not take it out again.
With a pump you can reduce your basal by the 30 min or hour as you choose. Same as you can increase it. Being able to have such minute amounts delivered by the pump and at what ever level you need will cut most of the night hypo's out as well.
Bolus you can use 3 types of bolus depending on the type of food eaten.

The pump just sits in her pocket or on her waist or where ever she wants to put it basicaly 🙂 After 43 years on injections I went on a pump and 1/2 a day later I was checking to make sure I still had the pump as just didn't notice it was there.
Cannula is changed every 3 days. No it's not painfull at all. 🙂
Cartridge should be changed no later than 6 days after 1st use. I just just change the tubing at the same time and reattache to the cannula.
A pump is life changing.......... for the better. There is a lot of work involved with testing etc and accurate carb counting. But the wow factor of feeling in control far out weighs the extra effort.
 
Yep agree with Sue although Medtronic actually recommend changing everything ever 3 days including reservoir and tubing and canula.

However you have found a group of people in a pump appreciation society. I will talk about the pump till the cows come home. My now 11 year old daughter will as well if you want. At that age they just pop the pump in their jean's pocket or use the clip. There are also belts that can be worn and matched with outfits. The favourite amongst kids at the moment are the spibelts from the USA. They are great.

Ask any question you like but do your research as well on line, there is loads of info out there. We can give you the plus' and negatives if you like. 🙂
 
My daughter is on the Animas 2020 and like Adriennes daughter would be an advocate for the pump. Puberty and lots of sport have caused huge swings nd poor control but much better than MDI . we have also changed insulin to humalog as its got a shorter spike time than Novarapid which was interfering with her swimming. Its hard work , all the time but slowly we are getting there and she wouldn't be without it ever.
 
Thanks to everyone for all of your comments, I am quite overwhelmed by the amount of time and effort everyone has put into these replies. In all the years Aimee has been diabetic, this is the first time I have ever used a forum like this. I think it is fab. Normally we go to the check ups at the hospital every 3 months and then thats it. It's nice to talk to other people that are going through what we are.🙂🙂🙂
 
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