Type 1 DS waiting for a CGM

[divinechoc]

Hi. My DS is just 6 and was diagnosed with type 1 diabetes when he was 3. He is on Omnipod pump and we have now just been granted funding for a Dexcom G4 but haven't got it yet. Has anyone out there got a young child with type 1 with a CGM? At the moment we do 24 finger pricks a day. His HbA1c is very good but he hypos often. Even tonight me and DP said we just can't believe how unpredictable his BGs are. A 2.6 at 10pm and having to prop him up in bed to feed him Glucotabs. I would so love to talk to anyone who has a child with type 1 as other people just really can't believe how hard it is to manage.

Not got a child with type 1 but I have it! 24 finger pricks a day really does sound extreme. I probably do about 10 on an average day! I've had it a long time now (30 years!) but I still find my levels are unpredictable at times and sometimes go wrong for no reason I can put my finger on!

Sorry not much help I know, but didn't want to read and run!

PS you are doing the right thing getting a CGM and pump now because as an adult i'm finding it impossible to get any of these things, despite being diagnosed aged 8!!

Hi. Great to hear form you. I know 24 BGs sounds extreme but DS is very active and I like to let him snack as often as his siblings. Jumping on the sofa for 5 minutes can make him drop really quickly whereas one biscuit can make him high. It is such a careful balancing act. And at night his BGs are steady say 1 in 3 nights and then hormones or growth or whatever it is sends him all over the place. I am determined that he will have the freedom that other children have as well as a complication-free adult life so regular testing is the only way. The CGM will help him so much and I am sad that there is so little funding available for children to have the technology that can clearly help them be healthy and have more freedom. But also you type 1 adults deserve access to this technology. Have you been pushing your GP and consultant?

Complication free is definitely possible! I am mostly complication free, just have some minor retinopathy in one eye which has been lazered and is stable. To be honest I think it happened during childbirth!

I have kept pushing but apparently it's all down to funding. Because my a1c is under 7% (under the old scale) they don't want to know (the trust, not my consultant - he's v supportive).

The insulin regime I've taken on is basically as though i'm on a pump but that sometime means injecting 6 or 7 times a day which obviously isn't ideal.

By the way I think you're doing a great job! Type 1 diabetes is so misunderstood, people think you take your insulin and everything will be fine! I've given up trying to make people understand it's not that simple.

Hello, my ds2 has type 1 as well - he is 6, diagnosed at 4. We average about 12 BGs a day, but he has very good hypo awareness so that helps. He has a Medtronic pump, wouldn't cope without that!

If you're on Facebook there's some really helpful groups you can join -Diabetic Mums uk, insulin pumping... just search and you'll find plenty. I've learnt so much from these groups and there's much more traffic than on here. My son has a pump but no COM.

Thanks for that advice. I will look on Facebook. I have been a bit reluctant to look for other type 1 parents on the internet but there are no children I know locally with type 1 and it is so good to be able to talk about it. I believe so strongly that children in the UK should be given better support and could have a better life (and their parents) if there was more money for good consultants, research and funding for pumps and CGMs. You shouldn't have to fight for it. Did you guys have to wait long for a pump?

I think most parents are in the same position of not knowing other families in this situation so that's where Facebook is great, you can get a response in minutes,sometimes, to your queries!
My son waited about 6-9 months for a pump and we love it! Especially temporary basal function, and remote control including! It's made a big difference to his quality of life and is easier for him to self manage.
There are often regional groups on Facebook if you search. Just try and make sure they are uk sites as confusing otherwise.

Hi divinechoc another one here to recommend on line groups and definately look into the uk children with diabetes online site. Our ds now 11 dxd 8 pumping medtronic and fully funded enlights.. Which the new version are brilliant.. We are aware that we are really lucky to get these,funded. He is also very active so temp basals are brilliant. But his hypo awareness is poor and only really says he is low bellow 2.1 which is scary. Good luck and hope your dex arrives soon!

Look for CWD email discussion group & also there are now parent groups on facebook for each clinical region so might help you find local parents. Look for Paediatric Diabetes Network with your region at the front on facebook- eg East Midlands Paediatric Diabetes Network.
Also T1-CGM information group on facebook.
We self fund Dexcom for my DS - he has very poor hypo awareness & really helps with that & also seeing where changes need to be made on pump settings.

Hi there. My ds uses dexcom - we've used it continuously for about three + years now and now have the animas vibe pump which shows the g4 tracking on it. It is amezzin! To go from far too many finger pricks a day to really accurate tracking is fab. We self fund too, but would not be without it.

His hb came down again with having the cgm and we began to sleep better. It is so much easier to make changes to pump settings too.

I'm so pleased you've got this!

I second cwd please find us on the email list, there are lots of us using cgm and we help each other a great deal.

Also as of today a CWD facebook group too. :)

:)

Thanks so much I will check out CWD. DS gets his Dexcom on 13 August! We have been waiting a year for the funding to come through. It is so good to hear how the CGM has helped you. And I realise how lucky we are to have it funded. More funding is needed to support children with Type 1 and give them the freedom they deserve!

You are very lucky. We're just glad to have access to it.

Tips: we use emla cream for an hour before to numb the area.

We restart every week - even when the sensor says fail to get more time out of it (although you are funded, so this will be less of an issue!).

We use tegaderm with a hole cut in the middle to help to secure the sensor to the skin - and apply skin tak underneath first.

They are ace. Welcome to a whole new world!

Is it waterproof for swimming? Does it not stay on well without the extra stickies? And how is it on the beach with sand/water?

Thanks for the advice. We can't wait to cut down on the finger-pricks and maybe just maybe have a little more sleep!

I think you have the separate system? You will need to keep the receiver dry and it will probably go out of range if he is away from you. We tended to put ours in a ziplock bag on the beach when we had the separate system. When ds is on the beach we tend to use a large tegaderm to cover the whole thing - keeps the sand out! Usually we use a smaller tegaderm that is just larger than the 'plaster' part of the receiver bit (on his bum, which is where he wears it), we cut a hole in the middle and the transmitters (grey bit) sticks up through the middle. Helps it to stick on for longer, otherwise the plaster can peel off - especially if the child can be a bit sweaty!

It's not too bad without the extra stickies, but the edges start to lift after a few days.

It will help you get a fascinating view into what is going on.

Yes, the receiver is water proof for swimming, it's just that the plaster may peel if it's been on for a couple of days, with the rubbing from swim suit. Etc. nearly lost ours in a public pool once before tegaderm!

Hey, we just got one of these for DH and it's fantastic (bought it on ebay, kind consultant gave us some strips to try). Really helping with figuring out variability.

OP, my DH is 31, had T1 since age 2 and is complication free and a paediatrician! Anything is possible, good luck