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Is a pump really a God send?

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PaulsMum

PaulsMum

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi There,

My name is Emma my son Paul is 3yrs and 5months. Paul was diagnosed with type 1 at 23months and was on injection therapy until April this year he was given a pump.

I have had no stability with it, his basal rates are difficult to find and he becomes ketotic very quickly if there's evena small error.

I change his cannula when he is asleep so he has become completely needle phobic....therefore I do not wanna go back to pens!

Sympathy and similar stories welcome 🙂
 
Hi Emma, welcome to the forum 🙂 I can't help with your question as I'm not on a pump, but we do have some very knowledgeable pumpers and parents here so hopefully they will spot this and be able to share their experiences. What was Paul's experience on injections like? Was he on 2 or 4 injections a day? Is he on very small doses? You most certainly have my sympathy.

Are you a member of the Children with Diabetes site? Lots of the members there have children on pumps and they have an email list for questions.
 
Hi,
i'm not a mum and have no experience of pumping in such little children but i have a pump and know it can be frustrating!! however, 2 years on i think it is brill, it must be really hard for you to sort his basal, i struggle and i completly understand why i need to fast and do extra testing etc, can't imagine explaining it to a 3yr old!!!!. have you got in touch with your DSN, they might have overcome similar probs before? hopefully parents on her might have more practical advice!
i dont really know what to suggest that might help, but i really hope you find something that works!!! will be keeping my fingers crossed for you!
ellie
 
Thanks for the warm welcome< im sitting waiting on a message back like a teenager!

Pens were not much better he was on levemire and novorapid injections, totally a might 5 injections a day - which as you can imagine is tough.

Hes on an average totally daily dose of between 10 and 14 units so something so small is so hard to control.

How do you deal with diabetes?
 
Hi Ellie thanks for your really positive reply. Did you get a pump on NHS or is it a private thing?

Also Im new to all this whats a DSN? 😛
 
which pump is paul on? mine can give 0.05 of a unit as a bolus and basal goes up in 0.025. i just adjust one step at at time or 2 if i'm way out.
as for dealing with IT, i just try not to let it dictate my life which is hard when BS are all over the place, sometimes i might throw my blood tester across the room (not too hard) which always makes me feel better!!!! where abouts in the uk are you? just out of interest!
 
We stay just outside Glasgow and where pumps are considered gold dust! Hes on a medtronic pump which goes up in similar incraments to you so I know we're lucky to have it just wish I could master it!
 
you'll get there! just try not to make too many changes at once otherwise you don't know which works or doesn't. also, maybe a temp basal rate might help if paul has a sudden burst or lull in energy? if it gets busy at work i knock my basal down 10% which seems to help then put it back when i;ve finished my shift
 
Hi Emma, fancy meeting you here!! I was wondering how Paul and Robbie were getting on. I can sympathise to some extent though I think were having a bit if an easier time with Ben than you are. The thing I keep trying to remember is how bad it was at the beginning when Ben was just diagnosed - I think starting on the pump has been like going back to the beginning when everything was new and you've no idea what to expect from one minute to the next but at least with the pump the end result should hopefully be better. Bens overall control is much better now though he's having a lot of hypo's just now. I think because they are so little even with the pump the basal being a tiny bit out can make a big difference but stick with it you'll get there. Are you still e- mailing the team a lot?
Ruth
 
Hi, my little girl is 2 and 7 months and been on the pump since sept '10. Still very early days for you and it does seem harder work with more testing and tweeking. Prior to the pump she was only on 2 injections a day and we only pre-meal tested. Learnt so much more about diabetes and management since going over to the pump. Invested in great book "Pumping Insulin" Walsh & Roberts, very informative and helpful.
Re: practicalities of changing the pump, we use Emla cream now and she doesn't feel a thing, no more upsets when the canulas need changing.
There were times in the initial few months when I just wanted to go back to the injections, but now I think this is the best way for us to manage her BGs.
We still have problems but she is having growth spurts and bugs and usual toddler behaviour and unpredicable spurts of activity, I wonder if we would have had such flexible control over these hurdles with the injections.
Hang in there! take care. 🙂
 
Hiya Paul's Mum

I can hear your frustration.

To answer your question, is a pump really a god send, my answer is yes but and this is a bit but it is not magic. I'm not saying you think it is but so many people think it is magic and everything will be ok. My daughter was diagnosed at 5 weeks old, she is now 11 years old so I know how hard it is with a toddler.

I am thinking that your basal are out that you are having that bad swings. It is mega hard with little ones.

However there is help and I know where to get it.

There are quite a few children, your son's age on a pump and they can be found in the UK children with diabetes email group. Its a really busy group and some people can't cope but others just delete the mail they don't want and some others open a specific email account just for the list, normally a google mail account. However they will definitely be able to help you.

You can join by going to our website www.childrenwithdiabetesuk.org and joining the UK email group.

If you don't want to do that then pm me your email address and I'll send it on to those few who I know will be happy to email you directly and help all they can.

Let me know and keep going.

🙂
 
Hi Emma,
welcome to the forum.
Yes pumping is well worth it but very hard work. Pos double the work for the mum's of young children though.:(
Have you purchased the book pumping insulin by John Walsh? It's available from Amazon.
Pumping insulin is known as the pumpers Bible.
I hope things settle down soon for you and your little one.

Sue
 
Hi Emma,

I'm the diabetic rather than my kids, but I was diagnosed at 11 months old, way back when 2 injections was the norm... I relatively recently (last year!!) got my mitts on a pump & they'd have to knock me out to get it back now! For about 10 years or so prior to that I was on a version of MDI (multiple daily injections) but only got on a DAFNE (Dose Adjustment For Normal Eating - sorry lots of acronyms!) in 2004, so spend years muddling along without a very clear idea of exactly how to tweak things...not brilliant! It sounds like Paul going on to the pump has at least been really good from the point of view of understanding diabetes better, which can only be good. 🙂

I know that getting basal rates right can be quite a challenge & can imagine how much harder it must be doing that for a small kid who's activity patterns / growth spurts will be unpredictable etc... but I honestly think if you can crack the pattern spotting & tweaking, you will achieve soooo much better control on the pump! 🙂 Also if you can stick with it I think Paul's quality of life will be much better too - for example when he starts school he will be able to bolus more accurately for snack times / meal times etc as & when he wants, & adjust for sports etc too, so he won't end up being the 'diabetic kid' in the corner who has to eat at 11am (or whenever) every day whether they are hungry or not etc... and I know little things like that can make / have made a huge difference to how I feel about my diabetes...

I know it's really really hard work, & I often humbled & amazed by the dedication of the mums & dads on this forum to their kids health - but as someone who's had D for 32+ years now, with not too much wrong to date, I can tell you the hard work pays off & your kids will be grateful for it. So is a pump worth it? I would say definitely, yes! Hard work, but much much better results when it cooperates! There are a lot of wonderful parents here & on CWD email list who will be able to offer more 'useful' advice, but I just wanted to encourage you - it sounds like you are doing an amazingly difficult job really well.

Wishing you both all the very best,

Twitchy xxx
 
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