CGM and offer of a Pump!!

[Han&Yas]

Hi everyone,

Hope everything has been going well with you all.

After reading about pump therapy on here, I spoke with my DNS on friday when she returned from annual leave and mentioned the 'pump' and how I have come across parents who's children undergo pump therapy and she was so nice and informative about it.

And she said that my son is eligible for a pump yaay !! , from what I gathered it seems like the ideal for young children, because of the flexibility and also the fact that the pump can have a hypo alert , how genius is that. I am worried about the canular bit but as hes had a CGM before in the winter, and that was really good he barely noticed it I feel a little bit more upbeat about it. He will be having another CGM in a few weeks as the hospital has got 3 more coming in.

As we are faced with our 1st summer with diabetes its become quite hard to control things, hes had a few hypos as low as 1.8 , I am having to test so much, its starting to annoy the little one aswell. He's also running away when I want to inject him, hiding behind the sofa, no tears but almost fed up of it if I am making sense ..

Appetite hasnt been great either, he just wants to eat small bits all day long, some fruitsalad here, abit of toast here, and a bit of milk there.. and the other night, I was asleep and something just made me get up at like 3 am and test him, I felt very uneasy about just continuing my sleep and when I checked him his bm was 2.7, I experienced relief, and horror at the same time.

Since then, I make a mental note of testing him through the night if hes had a active day which he had that particular day.

Ive got a appointment scheduled to talk about the pump some more with our DNs , but the sad thing is that we will have to transfer care which I dont want, our diabetes team have been so brilliant, especially the consultant the man came into hospital on his day off (sunday afternoon to be specific) when my little boy was admitted after a nasty infection which had his sugars dipping way too low last winter.

But the good thing she mentioned was that if we wanted once our hospital gets the pump therapy going at some point towards the beginning of next yr we could always come back.

I dont know really guys, I know I can deal with the educating myself bit regarding pump therapy, I can also understand it will be difficult at the beginning. My only worry is having to change the cannular (would you need 2 people to do this), the fact that he will have to carry the monitor bit he's quite active at times, and having to deal with explaining it to the family etc as they will make their judgement based on the fact that they see a tube attached to his body :shock:

I know I am going on abit here but ill be quick (this forum is so therapeutic ), his dad doesnt want him to have the pump because he is saying that our son is too young for it, the tubes and what if it comes off bla bla, I on the other hand find this a incredible thing for managing his diabetes, the hypo alert, the ability to give small doses on insulin, the fact that it takes into account any insulin which is already in his system etc.

As I mainly deal with my baby's diabetes, come to think off it until recently I did everything I think it will be a good thing, I am just not so sure what to expect in all honesty.

Any advice would be appreciated greatly,

Love to you all, and the kiddies

Hana -mum to 2yr old T1 since nov 09
On novo and lantus injections

 

[Jen&Khaleb]

I haven't met anyone who hasn't said that a pump hasn't been the greatest thing. Initially, I think all parents struggle with the extra testing and making adjustment (just like being newly diagnosed all over again) but after that they all rave about the little gadget. Kids seem to adapt really well and there are some great pouches available so they are hardly noticeable and don't get in the way.

I'm sure you would get quite good at the cannula changes. I've met some parents that manage to change them while their kids are asleep - although I think you have to stay up late and check the new sets.

I have frequently had that 6th sense to go and check Khaleb in the middle of the night (even though I get up every night anyway). I always wondered what woke me and have realised Khaleb's breathing changes slightly if he is low or really high and I think that is what I can hear. He's only in the next room to me.

Anyway, I'm sure you'll get more 1st hand experience with this from someone who is using a pump - or take a look in the pump thread.

Best of luck.

 

[Han&Yas]

Thanks Jen

Ive looked in the pump forum bit aswell, and been reading up on things.
So far all seems good, but will be talking to DNS aswell and just take it frm there.

I get what you mean with the 6th sense, what scares me is what if we didnt wake :? and thats a really frightening prospect.

I hope all is well with you and kaleb, I admire how positive you are about things and its made me quite humbled .. diabetes alone is a nightmare but add more illnesses must be realli tough but you seem so pleasant. Must be the ozzie charm hey

Speak soon,

 

[Clorinda]

That's great news!

I wouldn't worry about the canula bit. After a couple of weeks, I find it no problem.

I use "emla" cream - it's a numbing cream. I put a blog on where the new canula will go and put a "Tegaderm" over it (like sticky cling film) leave for an hour and he never feels the needle.

Keep us posted!

Clorinda

 

[Clorinda]

PS my son is 12 months now, and he's never pulled the canula out. We use a belt round his waist to hold the pump. He does play with the wire a bit when I'm using the pump, but once I stop fiddling, so does he. Really, there are a lot more interesting things going on around the house than a wire. Anyway we tuck it in.

I would say it's better to have a second person to hold you son when you change the canula, but I think it is possible to do it on your own if you are quick.

If you can get CGM then also go for it. We have the Paradigm Veo and that has a separate sensor. It works ok, but is about 20 mins behind blood glucose levels, but does give you a general idea of how he's doing.

My advice is to get everything you can and try it. If it doesn't work out, go back to injections.

Clorinda

 

[annettekp]

Hi

We've just been offered the pump too. I'm quite keen because as the main carer its me who deals with the unexpected hypo at 1.6!!!! And has to cope with a stroppy 2 year old who doesn't want to eat a meal but will snack through the day.

My other half doesn't want him to go on a pump because he says he will be 'attached' to his diabetes. He's also worried about everything coming to bits as Erland is extremely active -and thinks the tubing will get caught on things.

Erland's levels have been very up and down since he had the cold about 4 weeks ago.

It'll be interesting to see the replies to this thread.

Annette

 

[smaynard]

My daughter is 4.5 years old and got a pump and CGMs just before Christmas.

Prior to moving to the pump I had the same concerns as you regarding doing the insertions, wire getting caught, others' reactions to the pump etc.

The insertions for the first few weeks were not easy, however, I can honestly say that now they are incredibly quick and straightforward. We don't find any numbing cream to be necessary, it really doesn't appear to cause her any discomfort. To give you an idea, last night we had a problem with insulin delivery and needed to change her infusion set in the middle of the night, our daughter didn't even wake!

We found the CGMs quite a lot of work to master, however, we've found it to be an invaluable tool for really understanding how our daughter's body works and enabling us to respond quickly to highs and lows.

As others have mentioned, the reading lags some 15 mins behind her 'actual' level, however, when blood sugars are moving fast arrows are displayed alerting you that this is happening and which direction the levels are going. So we have the alarm set to alert us before she's reached hypo level on the CGMs and we finger prick to clarify realtime reading. This works very well for us and we typically catch hypos early (very, very rarely does she go below 3).

There is a REAL issue with the volume of the alarm though, it is WAY too quiet. Fortuately, our daughter is very good about telling someone the alarm has beeped during the day, but you can't rely on it waking her at night which I consider is a big design fault with the Medtronic pump. We run her basal levels higher than 'ideal' to compensate for this and if she's running lower than we're comfortable then she sleeps in our bed.

Our daughter adjusted very quickly to the pump and she's a big fan of her 'Mr Pumpy'. She's very active, enjoys gym, ballet classes etc. and we've never had a problem with the wire getting caught (even doing things like the bouncy castle is not a problem). We run the wire up the inside of her vest and clip the pump to her vest.

I'm surprised to say that my daughter's HaB1c has been unchanged by the pump (it's 7.2) however her levels are much flatter than prior to the pump. We used to see huge spikes and lows which is very rare now. As a consequence our daughter's energy levels and demeanour are vastly improved which is just wonderful.

We've also found the increased flexibility of when and what she can eat to be of huge benefit. All the stress over food that we found with injection therapy has just disappeared. We can deal with snacks and treats pretty much just like you would with any other child. Accurate carb. counting is crucial, so I just take a pair of scales and a carb. counting book where ever we go (we eat out several times a week and I don't find it to be a problem...restaurants we go to frequently are even kind enough to weigh the food for me).

Frankly, I can't imagine going back to injection therapy and, most importantly, nor can my daughter. There are some disadvantages of the pump and it is with out doubt more work, but in our experience WELL worth it.

Good luck!

 

[jacquiel]

so I just take a pair of scales and a carb. counting book where ever we go

where did you get little scales?

 

[ams162]

hiya

we are currently waiting for a pump should have one by spring which is great i also have been reading everything i could find, i also had a look at some videos on u tube showing some very young children having a cannula changed i found this eased my worries as it looked alot easier than i had imagined and even felt comfortable enough to show my worried 8yr old what it was like, put both our minds at rest i have to say and we are now looking forward to getting our new addition and the better control that will hopefully come with it.

good luck
anna marie