6yo Just Diagnosed

[KKM]

Hi All,
In have never posted anything likes this before but having read some of articles, I’m finding that a lot can be learned from shared experiences. So here goes;
My 6 year old son has just been diagnosed with type 1 and we are still reeling from the shock of this and struggling to figure out the insulin calculations. At the moment we are on bolus factors
1: 15g. 00.00 - 07.00
1: 12g. 07.00 - 18.00
1:15g. 18.00 - 00.00

We are using NovoRapid multi injections and Tresiba 4.5 units daily the evening. (No insulin pump at this stage)
We are also using the Dexcon Sensor G7 which I will come back to you later.

So the Reading levels start from 5.8mmol around 7.30am pre breakfast, peak around 9.5mmol post breakfast and then peak to about 10.5mmol post lunch around 1pm.
His levels then drop in the afternoon to 4.0mml and sometimes under at home time , 3.30pm and during snack time, but no symptoms of a hypo as he is having a snack.
The levels then drop again around dinner time which is at 6pm. But again no hypo systems as he is eating but the readings have dropped whilst he is eating.

The concern and what we have not got to grips with is the night levels.
Sleep is at 8pm (but he is struggling to fall asleep..eventually shut eye is around 9-9,30. We give the Tresiba at 8pm. The levels stay around 6 -10 mmol but then after from 10pm the levels rapidly increase to 15 - 17mmol. !! We have done some insulin corrections but have normally left it and the levels then come done to around 5.5mmol in the morning around 6am. What are we doing wrong with the night corrections?
Secondly, we are using the dexcon reading sensor but discovering misalignment from the reading and actual accu chek instant. We have recalibrated but should we speak to dexcon directly about this? Is this usual?

Lastly, we have not administered the insulin pump but NHS not discussing with us, too early, delays etc…
So is this something we can go private with and does anyone have experience of using with a 6 yo. Concerned how it operates in school environment.

Also, we are also experiencing some reaction from the Tresiba.. some itchy patches and hand swelling. We have given piriton which helps but not a long term solution. Any ideas on this and what we should do.? This is the 3rd change from Lantus to Levermir and now Tresiba

Sorry for the long post but just an anxious parent
Thanks

 

[rayray119]

Hi All,
In have never posted anything likes this before but having read some of articles, I’m finding that a lot can be learned from shared experiences. So here goes;
My 6 year old son has just been diagnosed with type 1 and we are still reeling from the shock of this and struggling to figure out the insulin calculations. At the moment we are on bolus factors
1: 15g. 00.00 - 07.00
1: 12g. 07.00 - 18.00
1:15g. 18.00 - 00.00

We are using NovoRapid multi injections and Tresiba 4.5 units daily the evening. (No insulin pump at this stage)
We are also using the Dexcon Sensor G7 which I will come back to you later.

So the Reading levels start from 5.8mmol around 7.30am pre breakfast, peak around 9.5mmol post breakfast and then peak to about 10.5mmol post lunch around 1pm.
His levels then drop in the afternoon to 4.0mml and sometimes under at home time , 3.30pm and during snack time, but no symptoms of a hypo as he is having a snack.
The levels then drop again around dinner time which is at 6pm. But again no hypo systems as he is eating but the readings have dropped whilst he is eating.

The concern and what we have not got to grips with is the night levels.
Sleep is at 8pm (but he is struggling to fall asleep..eventually shut eye is around 9-9,30. We give the Tresiba at 8pm. The levels stay around 6 -10 mmol but then after from 10pm the levels rapidly increase to 15 - 17mmol. !! We have done some insulin corrections but have normally left it and the levels then come done to around 5.5mmol in the morning around 6am. What are we doing wrong with the night corrections?
Secondly, we are using the dexcon reading sensor but discovering misalignment from the reading and actual accu chek instant. We have recalibrated but should we speak to dexcon directly about this? Is this usual?

Lastly, we have not administered the insulin pump but NHS not discussing with us, too early, delays etc…
So is this something we can go private with and does anyone have experience of using with a 6 yo. Concerned how it operates in school environment.

Also, we are also experiencing some reaction from the Tresiba.. some itchy patches and hand swelling. We have given piriton which helps but not a long term solution. Any ideas on this and what we should do.? This is the 3rd change from Lantus to Levermir and now Tresiba

Sorry for the long post but just an anxious parent
Thanks

How much are the readings off by?

 

[Pumper_Sue]

We are also using the Dexcon Sensor G7 which I will come back to you later.

Wow how did you get that as not out in the uk yet?

Lastly, we have not administered the insulin pump but NHS not discussing with us, too early, delays etc…
So is this something we can go private with and does anyone have experience of using with a 6 yo. Concerned how it operates in school environment.

You wont be given a pump until you understand how to use insulin correctly and can carb count. Going private would involve a consultant who would say the same thing so wait and learn first.
A pump is not a magic and also involves a lot of hard work on your part.

Secondly, we are using the dexcon reading sensor but discovering misalignment from the reading and actual accu chek instant. We have recalibrated but should we speak to dexcon directly about this? Is this usual?

What do you call misalignment? Dexcom can be a complete and utter pain in the bum for a day before it settles and you also need to remember the Dexcom reads 15 mins behind a finger poke.

Also, we are also experiencing some reaction from the Tresiba.. some itchy patches and hand swelling. We have given piriton which helps but not a long term solution. Any ideas on this and what we should do.? This is the 3rd change from Lantus to Levermir and now Tresiba

This isn't acceptable so a solution needs to be found.
If your son has reacted in the same way to all of the basal insulin's then he needs to be fast tracked for a pump and you for a education course so it can be used safely.

Sending you a huge (((((((((((((((((hug))))))))))))))) as must be very stressful for you.

 

[Thebearcametoo]

Hi and welcome


When you say recently diagnosed, how recently? In the early months it’s a lot about data gathering and your team will then adjust ratios or insulins. It’s tempting especially when you have a continuous monitor to want to get the numbers perfect but it’s much easier on you all to go for ‘good enough’. Too much data can cause a lot of stress.


Your diabetes team is your rock in the first year (and ongoing but we rely much less on ours now). There are so many variables with newly diagnosed kids who are still in their honeymoon phase that it’s much better to give the info to them and get them to help you work through what needs to be changed as they have the full picture. You will get the hang of it and be making your own adjustments but right now you’re still getting to grips with a lot of information. Let them do the work for you.

Dexcom - how far off are the readings and what is the trend? We only recalibrate if the readings have been stable for more than an hour (aren’t going up or down in actual readings not just the arrows) and not while there’s any active insulin onboard. I don’t remember the last time we recalibrated. Sensors tend to lose accuracy the further out of range they are but I wouldn’t recalibrate based on those readings.


Pumps. It’s a whole new learning curve adding in a pump and whilst yes they can give great results they aren’t a magic bullet. It does take time to get one for numerous reasons but there is no way to get one privately nor any need. You will get a pump and be supported in doing so but it’s a discussion between you and your team as to when that’s best suited for your child’s needs.


Any reaction to insulin should be flagged to your team immediately and discussed with them.

(My kid was diagnosed at 8 and is now 12. It does get easier I promise).

 

[KKM]

Thanks. I meant the g6 sensor. That’s how stressful this has been !!
Thanks for the Dexcom lag...I knew that the readings would be different because of one being direct and the other via skin plasma. The discrepancy has been minor in most instances but frustrating when on the reading is showing a hypo but not actually and the same when its in hyper!

The pump situation is that nhs is 6 months to a year behind because of COVID. Thanks for this advice. I think my main concern is the reactions to the insulin as the little man is not sleeping because of it. The good thing he is full beans and bouncing around!

 

[KKM]

Hi and welcome


When you say recently diagnosed, how recently? In the early months it’s a lot about data gathering and your team will then adjust ratios or insulins. It’s tempting especially when you have a continuous monitor to want to get the numbers perfect but it’s much easier on you all to go for ‘good enough’. Too much data can cause a lot of stress.


Your diabetes team is your rock in the first year (and ongoing but we rely much less on ours now). There are so many variables with newly diagnosed kids who are still in their honeymoon phase that it’s much better to give the info to them and get them to help you work through what needs to be changed as they have the full picture. You will get the hang of it and be making your own adjustments but right now you’re still getting to grips with a lot of information. Let them do the work for you.

Dexcom - how far off are the readings and what is the trend? We only recalibrate if the readings have been stable for more than an hour (aren’t going up or down in actual readings not just the arrows) and not while there’s any active insulin onboard. I don’t remember the last time we recalibrated. Sensors tend to lose accuracy the further out of range they are but I wouldn’t recalibrate based on those readings.


Pumps. It’s a whole new learning curve adding in a pump and whilst yes they can give great results they aren’t a magic bullet. It does take time to get one for numerous reasons but there is no way to get one privately nor any need. You will get a pump and be supported in doing so but it’s a discussion between you and your team as to when that’s best suited for your child’s needs.


Any reaction to insulin should be flagged to your team immediately and discussed with them.

(My kid was diagnosed at 8 and is now 12. It does get easier I promise).

Thanks for this. Comforting words. My son has been diagnosed 4 weeks ago and it seems our world (and his) has been turned upside down.
We have recalibrated when we have hypo situation reading. Most times the readings are within range ie , 0.2 - 0.5 so not concerned. However we have had discrepancies of more then 1.0 to 1.5. Should I be worried or when should I give finger prick tests?

 

[Sally71]

Welcome to the forum, although sorry that you have to be here! My daughter was diagnosed at 6 so hopefully I can answer some of your questions.

How long ago was your son diagnosed? It sounds like very recently, in which case his blood sugars look pretty good. Don’t stress out if they aren’t perfect all the time, it isn’t possible to achieve that! Just do your best and if you get a bad day when they won’t behave just try again tomorrow. Looking for patterns is useful though, sometimes it can suggest a solution.

I can see why you are concerned about the rises at night. Do you always correct them? If you correct them and they don’t come down then it’s possible that you need more correction insulin at night than you do in the day, this is usually the case for my daughter. In which case speak to your medical team about the ratios you use (the insulin sensitivity/correction ratio is not the same as the carb ratio that you use for meals). However, if you don’t correct and the blood sugar eventually comes down again on its own then you aren’t doing anything wrong, that would suggest that it’s an issue with his basal profile. The problem with long acting insulins is that they work when they want to work, and the time at which they are most active does not necessarily match when your body needs them to be most active, hence there will always be fluctuations in blood sugar levels even when not eating anything. Tresiba is a particularly long-acting one I think, not sure if you can split the dose on that one. May I ask why you changed from Lantus and Levemir? Levemir can definitely be split into two doses which would give you a bit more flexibility. Certainly your medical team should be able to help but it might take a lot of trial and error before you find the right insulin and doses which suit him best. And then they don’t stay the same, especially when he grows, it’s almost a full time job unfortunately.

Dexcom is great, we find it much more reliable than other sensors, although not everyone would agree with me! Everyone is different and it seems some systems work better for some people than others. The problem with any sensors is that they are not reading blood, they are reading interstitial fluid, which means they readings they get are not the same and they have to do calculations to give a result as close as possible to what you would get with a finger prick. They will be more accurate when the blood sugars are stable than when they are rising or falling quickly, then they will be a bit behind.

Pumps - we got one 8 days after diagnosis, mainly because there was a trial going on at the time comparing injections with pumps in newly diagnosed children, the hospital were desperate to get someone on the trial and I think we were the first one they signed up and we were lucky and got the pump. I’m not going to lie and say it was easy, we had barely got over the shock of the diagnosis and getting used to injections and then we suddenly had to learn a whole load of new stuff, honestly I hardly knew what day of the week it was for a while. But thanks to the support of the hospital team we got through it and didn’t look back. I don’t think there is any way you can go private to get a pump, and unfortunately most people have to wait a lot longer than we did. They are not a magic fix, they are much harder work than injections but if you get it right they are much more flexible so could easily sort out the highs at night for example. My daughter had the same problem and it’s easily fixed with a pump because they only use rapid insulin and just drip tiny doses in all the time for the basal, which means you can change the dose by the hour so we just whack it up by quite a lot for the first few hours of the night and then it gradually comes down again before morning and that keeps her fairly stable. Pumps can also do MUCH tinier doses than injection pens can, which is better for small children who usually need such tiny doses. I did used to sometimes feel like I was constantly fiddling with the settings on my daughter’s though, and never quite getting it right, then we’d get perfect numbers for all of about 3 days and then it would all change again!

There are many different pumps available so you would have to find out which ones your hospital offers, they don’t all offer all of them. Some can link with sensors (we have Tandem T-Slim pump linked to Dexcom G6) and the pump can then be semi-automatic and automatically adjust the background amount to reduce or minimise highs and lows, not perfect but it means less stress and a bit less work for you. I think you need to be on a minimum dose of insulin for that system to work properly though and they are not to be used for under 6 year olds for that reason, so your son might not qualify if his total daily insulin dose isn’t high enough. There’s no reason why he can’t use a pump without sensors though.

At school you will need to talk to staff, by law the school has to provide someone who is willing to be trained up to do whatever is necessary to help children with medical conditions. This doesn’t have to be the class teacher, could be support staff, but talk to whoever it is, there is no reason why they can’t be trained to do insulin doses on the pump. Diabetes nurses are good a going in to schools and helping with training. You’ll have to make a care plan with full instructions for staff to refer to. Also, I don’t know if you’re carb counting yet but for a pump you HAVE to carb count because that’s how they work, we have always found that school staff are a bit reluctant to carb count for us because they don’t want to get it wrong, so you’d probably have to send your son with a packed lunch or get in touch with whoever provides the school meals to get the relevant information, and then provide the carb count yourself.

My daughter turns 16 this week and is in the middle of her GCSEs right now and can manage most things about her diabetes by herself now, the first few months are tough but it does get easier, honest! We rarely need to contact the nurse about anything any more. Don’t panic, you’re doing fine, ask any questions you like 🙂

 

[Sally71]

Thanks for this. Comforting words. My son has been diagnosed 4 weeks ago and it seems our world (and his) has been turned upside down.
We have recalibrated when we have hypo situation reading. Most times the readings are within range ie , 0.2 - 0.5 so not concerned. However we have had discrepancies of more then 1.0 to 1.5. Should I be worried or when should I give finger prick tests?

Always use finger pricks when hypo because quite often sensors will still be reading low after blood sugars have returned to normal. We have been advised that Dexcom should almost never need recalibrating, the only time we ever did it it was then wrong afterwards and we had to change it back again! We’ve had a couple that have read a bit low when newly inserted, but they usually settle after a few hours, and one or two that went a bit flaky for the last day or so (the track had weird dips and jumps that made no sense, possibly it was starting to become unstuck!) but usually they are pretty good for us.

 

[Pumper_Sue]

Thanks. I meant the g6 sensor. That’s how stressful this has been !!

Phew and there was me thinking I was missing out on something 🙂

Thanks for this. Comforting words. My son has been diagnosed 4 weeks ago and it seems our world (and his) has been turned upside down.
We have recalibrated when we have hypo situation reading. Most times the readings are within range ie , 0.2 - 0.5 so not concerned. However we have had discrepancies of more then 1.0 to 1.5. Should I be worried or when should I give finger prick tests?

Wow that's very accurate, no need to worry at all 🙂
I always finger prick for meal boluses and any corrections needing to be done No1 rule is never rely on a CGM for insulin boluses.

As others have said you are doing fine, take one day at a time things do become easier and you have to remember Rome was not built in a day.
As a Mum you will always worry it's natural 🙂 My Mum is 86 in a couple of weeks and even though I was diagnosed as 4 1/2 year old she still worries to this day (No idea why).

 

[Thebearcametoo]

Thanks for this. Comforting words. My son has been diagnosed 4 weeks ago and it seems our world (and his) has been turned upside down.
We have recalibrated when we have hypo situation reading. Most times the readings are within range ie , 0.2 - 0.5 so not concerned. However we have had discrepancies of more then 1.0 to 1.5. Should I be worried or when should I give finger prick tests?

You don’t need to recalibrate when hypo. The sensor will give you a good indication of trends and the alarms are really helpful (I presume you use the follow app so you can see on your own phone what the numbers are doing) but use a finger prick to check and treat hypos as that’s instant and doesn’t have the lag.

4 weeks is really early. There will be a lot of support from your team and you can contact them any time you need to and upload data for them to look at. Don’t be scared to call out of hours if you have concerns and you can call the children’s ward in the middle of the night if you need to. Sometimes we just need someone else with more knowledge to confirm what we’re thinking with stubborn hypos or other stuff.

With the honeymoon phase and general growing phases the ratios will change a lot in the next few months so there will be lots of adjustments to how much insulin is given etc. You‘ll slowly build your knowledge and confidence for making those adjustments but even so we still to rely on the team to pick things up too.

Once you’re in the groove of carb counting and general management you’ll be able to breathe a bit and deal with your feelings but it’ll all still be A LOT right now. Be patient with yourself.


If your team ok the reaction to the tresiba and it’s just sleep that’s the issue then talk to them about moving it to a different time of day (moving doses is usually done in stages) but definitely talk to them.

 

[KKM]

Thanks everyone for responding and some sound advice. we have just been away on hols (uk staycation) and we had a couple of sleepless nights where the glucose reading went to 16 and 18! We had to give 1 unit corrections late at night but no-one tells you when to give the corrections or at what level or how many corrections (if another is required and then how long apart)..its a minefield. We called our Paediatric Registrar who was pretty good and reassuring when I spoke to him at 1am.
We are sorting to get to grips with this but having some bad days and carb counting is difficult when dining out and finding food which may not be listed ie, some of the world foods..so we are never sure if we have counted the carbs accurately.
Our main concern is the allergic reactions which seems to be getting worse...itchy hives behind the legs and in the groin area. Not pleasant but we are using antihistamines (Piriton) which seems to work. The flair ups are sporadic..again some goods days and bad ones, but usually after the insulin jabs. I assume that we should speak to our support team. Are there other insulins? we are using Tresiba and NovoRapid. we have used Lantus and Levermir and again caused hives and irritation.

 

[Thebearcametoo]

If novorapid is ok but not tresiba then a pump may be the best option long term. But yes you should speak to your team about the reaction asap


With corrections - the life of a novorapid dose is 4-5 hours with the peak after about an hour so look at when the last dose was. If it’s outside of the 4-5 hour window and there’s not another meal due then I would do a correction. We use our meter to work out the correction dose as the ratios are already in there. If it’s late at night I may reduce it by half a unit as I’d rather he runs slightly high than goes hypo. I wouldn’t give another correction for another 4-5 hours unless numbers have rocketed.


With eating out we tend to do a best guess using chain restaurant websites or carbs and cals. You develop a superpower of looking at a plate of food and guesstimating the carbs over time but it does take time and sometimes we get it wrong. Doing a correction dose later (at the next meal or before bed) is pretty common if we’re eating out or at parties.

 

[Inka]

@KKM All the basals you mention above are analogue insulins. Sometimes people can’t tolerate them and do better on older insulins. You could try a human isophane insulin or even a porcine isophane insulin.

Just briefly, we first used animal insulins, then genetically engineered ‘human’ insulins, then most recently analogue insulins - which technically aren’t insulin at all because they have their molecules shuffled around to achieve various effects. All the basals you’ve tried are in that third group. So, trying a basal from the first or second group is an option. It’s possible to tolerate a bolus insulin from one group but not a basal, or vice versa. Ultimately a pump might be the answer.

I hope you get it sorted. It sounds unpleasant for your son.

 

[Bexlee]

Hi. It could be the needles. Apparently they’re costed with something so they go in easier. I had bad allergic reaction to the needles I started with and had to try a few to find out the best.

I now use Own Mumford 4mm unifine pentips.

 

[novonord]

just read that Professor Evans is recruiting newly diagnosed type 1 patients for a trial of a drug IMCY0098 in Addenbriookes,Cambridge, 'trojan horse' approach to reeducate the immune system and preserve beta cell function...may only be recruiting adults but might be worth investigating..