Newly Diagnosed Type1 parents to 5yr old :-(

Ditto

Well-Known Member
Relationship to Diabetes
Type 2
Hello and welcome to the forum @649tom, sorry about your little girls diagnosis and at Christmas too. :(
 

649tom

Member
Relationship to Diabetes
Type 1
Is that the Expert? It’s a while since I’ve used one, but I think you should be able to adjust the time blocks - @Kaylz may know which buttons to press?

Yes that's the one! I've found how to change it but we now want to discuss the ratios with our nurse as we'd like to change them based on the data we've looked at from the Libre.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
I've just had a pork chop, spuds, carrots and full carb cauliflower cheese - white sauce made starting with a roux of flour and butter then the milk added very gradually and beaten constantly then a very good dollop of English mustard added (made mustard absorbs far better than adding mustard powder) and plenty of pepper then allowed to cool a little before beating in an awful lot of grated strong cheddar. It should only be able to slide out of the saucepan in dollops, NOT be poured. And lovely thick Bisto gravy. Know what else? I'm going to have some trifle in a minute.

Just carry on with your normal diet is what I'm saying - and NOOOOOOO! - long acting insulin does NOT have any effect of what we do or don't eat. All our bodies need insulin to simply exist 24/7/365, which is what the slow acting/background/basal insulin does, then if we wish to eat anything - we then need fast acting bolus insulin to deal with that. The two are not interchangeable, they are not intended to do the same things at all - it's a tricky balancing act, but we all get there over time.

You have no necessity whatever to change anything you did or ate before she was diagnosed - hence the 100% correct advice that if she wants pizza or cocopops, assuming she usually eats either thing you should let her, although most people know they are both high carb. We don't care if you are carboholics or vegans as long as you can calculate how many grams of carb are in Scarlett's portion and capable of learning how to adjust her insulin doses to accommodate the food and activity level. Nobody expects you to know how to do this to begin with - we all had to learn how to do that however old we happen to be.

While you're waiting for Waterstone's, dive into the Diabetes UK Learning Zone - you need to register with it after you click on the link at the top of every forum page in bright orange, and get educating yourselves asap.

If you thought the dieticians advice was potty - why did you not question it? She is your new mate and 100% willing to explain everything, as are everyone that works in your daughter's diabetes clinic from the receptionists to the cleaners - and if it happens to affect either one of you or Scarlett a bit too much mentally - so is the psychologist! She's under their care until she's 19 and can be gradually handed over to the adult clinic, who also will be there for all of you to begin with. They absolutely are there to hold our hands throughout (well during working hours anyway LOL) whether the Type 1 person is aged 5 like Scarlett or 70 like me!

Make full use of them - and never stop asking until whatever it is has sunk in properly. Ask, ask, ASK.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Re the Expert meter - ring nursie tomorrow and she'll discuss it with you, then if she agrees the change she can talk you through it. I could tell you myself, but I know nowt about you or your baby so I'd far rather someone medically qualified and thus insured should this cock up your daughter's health, advises you at this early stage, because I care about her and it's only a couple of hours until tomorrow.
 

649tom

Member
Relationship to Diabetes
Type 1
I've just had a pork chop, spuds, carrots and full carb cauliflower cheese - white sauce made starting with a roux of flour and butter then the milk added very gradually and beaten constantly then a very good dollop of English mustard added (made mustard absorbs far better than adding mustard powder) and plenty of pepper then allowed to cool a little before beating in an awful lot of grated strong cheddar. It should only be able to slide out of the saucepan in dollops, NOT be poured. And lovely thick Bisto gravy. Know what else? I'm going to have some trifle in a minute.

Just carry on with your normal diet is what I'm saying - and NOOOOOOO! - long acting insulin does NOT have any effect of what we do or don't eat. All our bodies need insulin to simply exist 24/7/365, which is what the slow acting/background/basal insulin does, then if we wish to eat anything - we then need fast acting bolus insulin to deal with that. The two are not interchangeable, they are not intended to do the same things at all - it's a tricky balancing act, but we all get there over time.

You have no necessity whatever to change anything you did or ate before she was diagnosed - hence the 100% correct advice that if she wants pizza or cocopops, assuming she usually eats either thing you should let her, although most people know they are both high carb. We don't care if you are carboholics or vegans as long as you can calculate how many grams of carb are in Scarlett's portion and capable of learning how to adjust her insulin doses to accommodate the food and activity level. Nobody expects you to know how to do this to begin with - we all had to learn how to do that however old we happen to be.

While you're waiting for Waterstone's, dive into the Diabetes UK Learning Zone - you need to register with it after you click on the link at the top of every forum page in bright orange, and get educating yourselves asap.

If you thought the dieticians advice was potty - why did you not question it? She is your new mate and 100% willing to explain everything, as are everyone that works in your daughter's diabetes clinic from the receptionists to the cleaners - and if it happens to affect either one of you or Scarlett a bit too much mentally - so is the psychologist! She's under their care until she's 19 and can be gradually handed over to the adult clinic, who also will be there for all of you to begin with. They absolutely are there to hold our hands throughout (well during working hours anyway LOL) whether the Type 1 person is aged 5 like Scarlett or 70 like me!

Make full use of them - and never stop asking until whatever it is has sunk in properly. Ask, ask, ASK.
Thank you so much
 

Kaylz

Well-Known Member
Relationship to Diabetes
Type 1
Sorry @everydayupsanddowns I log off at 9pm so only just catching up now

@649tom I'd be wary on using the Libre graph to make changes to ratios, what is it that makes you think the ratios need changing? Is it that she's going low/high? Or is it because she is spiking? Remember the Libre isn't always accurate and many things can play a part in how accurate it is so do remember to do comparison tests with the Expert meter, I'll warn you there seems to be yet another issue with some Aviva strips not working in the fact that they say there isn't enough sample even though there's plenty so please do make sure you have a good amount of strips in just in case you experience this issue
xx
 

Thebearcametoo

Well-Known Member
Relationship to Diabetes
Parent
As Kaylz says be wary of the Libre data especially at the extremes. It’s a useful tool to see trends but not accurate enough to base all your data off.

You can add extra time blocks in we always had meal blocks and then snack blocks in between which may have had different ratios. And our meals tend to be late so we always had to move them later than the clinic tended to default to. It’s worth keeping in touch with your team when you make changes as sometimes it’s the carb ratio that needs changing, which I find straight forward, and sometimes it’s the insulin sensitivity which needs changing which still 2 years in I don’t fully ‘get’. And sometimes it’s actually the basal that needs changing anyway so do chat with them about things you think need changing.
 

Bronco Billy

Moderator
Relationship to Diabetes
Parent
Hi @649tom, welcome to the club no-one wants to join :) Sorry to hear about your daughter’s diagnosis. Congratulations on your spelling, by the way :)

I have two children with type 1 who were diagnosed within a few months of each other. Guess what, we’ve got through, and so will your family. It might not seem like it now, but each day, you are learning more and gaining experience, which is making you better at caring for your daughter. It’s amazing how resilient children are! I know we, as parents, are more aware of what lies ahead, but what you will learn (one of many, many things) is how to not let diabetes get in the way of living. There is a rugby player called Henry Slade who is type 1, it hasn’t stopped him playing for England. Diabetes will only stop you and your daughter doing anything if you let it. That’s for later, right now, it’s about finding a new ‘normal’ in everyday life and learning about diabetes and how your daughter and her body react to certain things.

Her BGs will get easier to control. It’s possible she is in the ‘honeymoon’ period at the moment, where her body is still producing a little bit of insulin itself, which makes it really hard to look for patterns and make adjustments.

You are absolutely right to stay well clear of a low carb diet! Children need a balance in their diet for their bodies to develop. Don’t avoid anything, mine still have pizzas, ice-cream etc. and we deal with it. Denying her certain foods because she is type 1 will only lead to her resenting the condition. Having a pump makes it easier, but I’m sure it’s possible on MDI as well. Don’t beat yourself up if she goes out of range, it’s going to happen sometimes no matter what you do.

Take care and ask any questions you need to. There is no such thing as a silly question :)
 

nonethewiser

Well-Known Member
Relationship to Diabetes
Type 1
She's a rather free spirit and love to dance and roll around a lot. Shes also HATES anything attached, stuck and hanging off her so I think a pump is while off tbh. Getting her to accept the Libre sensor was hard enough and she's not had it changed yet which we're dreading Tuesday. So basically we need to become 'experts'.

When things settle down & gets used to libre on body she might be more open to pump idea, device is game changer & shouldn't interfere with activities like dancing, plenty sports people use them.

Good luck hope all goes well.
 

649tom

Member
Relationship to Diabetes
Type 1
When things settle down & gets used to libre on body she might be more open to pump idea, device is game changer & shouldn't interfere with activities like dancing, plenty sports people use them.

Good luck hope all goes well.
What are the best but smallest pumps offered on the NHS for 5/6 yr olds does anyone know?
 

nonethewiser

Well-Known Member
Relationship to Diabetes
Type 1
What are the best but smallest pumps offered on the NHS for 5/6 yr olds does anyone know?

Afraid its case of asking what's available thru local nhs trust, diabetes clinic will advise on most suitable pump for your daughter.
 

Inka

Well-Known Member
Relationship to Diabetes
Type 1
What are the best but smallest pumps offered on the NHS for 5/6 yr olds does anyone know?

Ask your daughter’s team what pumps their hospital offers. It varies by area. Also ask if they’d fund a CGM because that might affect your pump preference.

Pumps are generally pretty tiny. Mine is 62g inc battery and a full reservoir of insulin. It’s dinky to look at. The benefit of a pump is the ability to finetune basal according to an individual’s need. If you do one or two injections of basal insulin a day, that insulin will ‘release’ itself from the injection site over 12/24hrs and it might be too much for one time of day yet too little for another time. You can’t change the release. But with a pump, you can individually programme each hour for a different amount of basal insulin. You can also temporarily increase or decrease the basal amount to deal with exercise or illness. You can also bolus tiny amounts of insulin (e.g 0.05 units) which is great, particularly for a small child.

A pump also means less needles - one set change (ie needle) every 3 days rather than multiple injections a day.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Removal of Libre sensors gets easier after a fortnight when I've had some showers than it was with the first one ever, several years ago which I accidentally ripped straight off on Day 3 by walking into the edge of the aggressive thin wood (?) panel at the side of our motorhome bathroom door when I was utterly desperate for the loo, Sheet!!! - rendered me speechless for approx 20 minutes and that's not like me at all!

So I was dreading it - but have been pleasantly surprised, I start by running my thumbnail under the nearest edge and take it very gently then once it's halfway ish, it peels off quite easily and painlessly.

But I'm not 5 - so over to all the other parents on here for any tips and distractions they've tried.
 

649tom

Member
Relationship to Diabetes
Type 1
Removal of Libre sensors gets easier after a fortnight when I've had some showers than it was with the first one ever, several years ago which I accidentally ripped straight off on Day 3 by walking into the edge of the aggressive thin wood (?) panel at the side of our motorhome bathroom door when I was utterly desperate for the loo, Sheet!!! - rendered me speechless for approx 20 minutes and that's not like me at all!

So I was dreading it - but have been pleasantly surprised, I start by running my thumbnail under the nearest edge and take it very gently then once it's halfway ish, it peels off quite easily and painlessly.

But I'm not 5 - so over to all the other parents on here for any tips and distractions they've tried.
We got the libre sensor off this morning with some plaster remover. Cost £10 for a tiny spray bottle. Robbing gits. Aparently we can get our GP to add it to pur rescription though
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Apparently yes, we can if we need it - I knew about it but didn't know what to tell you to get, since I've not needed any.

Being so new to the game, have you got the Libre 2 already?
 

Thebearcametoo

Well-Known Member
Relationship to Diabetes
Parent
Yes do get the removal spray on your repeat prescription it makes the whole process so much easier. You may need your diabetes team to fill in a prescription request for it but they should be able to do that easily.
 

helli

Well-Known Member
Relationship to Diabetes
Type 1
I remove my sensor in the shower - start peeling it off and then let the water get under the tape to loosen the glue. Then it comes off without any problem.
Just like when wearing sticking plasters for a while, there may be some dirty glue left. I remove this with nail varnish remover. Some people seem to be afraid of nail varnish remover being too stringent on the skin but it is no longer acetone and is much nicer to skin (when removing nail varnish, it will get on hands so it can't be too nasty). And cheaper than removal sprays even if you get them on prescription (someone needs to pay for them and the NHS can do with any extra cash it can at the moment).
 

Northerner

Admin (Retired)
Relationship to Diabetes
Type 1
I remove my sensor in the shower - start peeling it off and then let the water get under the tape to loosen the glue. Then it comes off without any problem.
Just like when wearing sticking plasters for a while, there may be some dirty glue left. I remove this with nail varnish remover. Some people seem to be afraid of nail varnish remover being too stringent on the skin but it is no longer acetone and is much nicer to skin (when removing nail varnish, it will get on hands so it can't be too nasty). And cheaper than removal sprays even if you get them on prescription (someone needs to pay for them and the NHS can do with any extra cash it can at the moment).
I use one of the antiseptic wipes which comes with the Libre sensors i.e. you use one before putting the sensor on and one when you take it off :) Does the job for me :) Also, if a sensor does not work as expected i.e. if it is considerably out of line with blood tests, do ring Abbott and request a replacement, they accept this can happen and will happily replace. Also, if one falls off or gets knocked off accidentally (I've had a couple fall off, but never knocked one of, but a 5-year old's daily lifestyle is probably a lot more active than mine! :D )

Good to see all the great advice you have received - you've made two excellent moves already: getting the Ragnar Hanas book and joining here! :)
 

649tom

Member
Relationship to Diabetes
Type 1
I use one of the antiseptic wipes which comes with the Libre sensors i.e. you use one before putting the sensor on and one when you take it off :) Does the job for me :) Also, if a sensor does not work as expected i.e. if it is considerably out of line with blood tests, do ring Abbott and request a replacement, they accept this can happen and will happily replace. Also, if one falls off or gets knocked off accidentally (I've had a couple fall off, but never knocked one of, but a 5-year old's daily lifestyle is probably a lot more active than mine! :D )

Good to see all the great advice you have received - you've made two excellent moves already: getting the Ragnar Hanas book and joining here! :)
That's interesting to hear. We should have kept the last Libre sensor as it was up +1-2mmols at the lower end and +2-5 at higher BG levels. The new one has been on 24hrs and appears to be accurate +/- 1mmols which we can live with. The Libre 2 scanner arrived today so can't wait to try it out in a couple of weeks
 
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