Leo the lion age 9

[Lion2012]

Hi everyone i hope all are keeping well.

My 9 yo boy was diagnosed with t1 diabetes four years ago now, he also has cystic fibrosis and touch wood is well.

He has been through so much in his short life much more than i think most adults will go through in there lifetime.
His mother passed away recently too so it is just me and him. We are a great team and keep very active indeed which helps with his cystic fibrosis and diabetes.
He has signed a contract for rotherham United and also plays for England . I am so very very proud of him.

My question is, his bloods these past few months have been uncontrollable ... The insulin seems to be like water to him. The within range levels only come hours after eating. Any snack given, any lunch, tea he's absolutely sky high!!!!..... I just cannot get him down.
This eve for example he was 5 before tea. Then wanted a snack so i gave him a mousse 15g carbs... One unit taken (novo rapid)... I Checked him two hours later before tea he was 14?!...
I worked his tea carbs out and let him eat. Two hours later he was 19!!!!!!..... So, as it was now bed time i corrected him using his accucheck metre and sent him to bed.
Two hours later.. Midnight.... I checked again and he was 19 still!!!!!!!..... Crazy. This is all the time when he eats.
I have tweaked his carb to unit ratios etc.. Increased Levermere at night to 10.... As the Dr's recommendation of 12 brings on hypos. Still no change.
He also shoots up so high through the night. His libre 2 sensor (which has never ever been even close to accurate) but valuable for alarms keeps going off all through the night as warning hyper alert!... The graph on the libre is constantly in the 18s 19s 20s.... Then huge drops to 5.. 6.... Then rockets again.
The graph is out of control. Never steady in the green.... Ever. The odd two or three readings only.
ANY advice would be most appreciated as i have no control of this anymore and once prided myself on controlling both diseases to the best of my ability. It's very upsetting as i feel i am letting my boy down but what more can i possibly do?

The Omnipod has been suggested.. Or the tslim pump but with my son playing academy level football this will just not stay in. His libre has been out a couple of times already as football just isn't accommodating to pumps.

Thank you for your advice in advance

Regards. Paul Sables
Father to Leo the lion with cystic fibrosis and t1 diabetes.

 

[Inka]

Welcome @Lion2012 🙂 Your son definitely sounds like a lion🙂
My first thought was could it be the hormones of puberty affecting him? What bolus insulin is he on? Do you inject enough in advance of eating? Is he on any medication that might be affecting his blood sugar?

What about a tubed pump that he can detach for football? Then all that would be left in him would be the tiny cannula which is little more than a plaster with a bit of plastic on? I have a pump and I actually keep it on for most sport. It’s only contact sports that I take it off for. It gives incredible flexibility with basal.

 

[Lion2012]

Good morning and thank you for your reply.
His ratios change or are tweaked recently due to the highs....
His carb ratio in a morning is 1 unit for 5.....
Insulin sensitivity 1 for 8

Late morning ratio 1 for 20
Insulin sensitivity 1 for 10

11am to 1600 ratio
1 for 10
Insulin sensitivity 1 for 10

Avening
Carb ratio 1 for 10.. Recently changed due to highs
Insulin sensitivity
1 for 10

I have been told about the detachment of the pump.... But he does train and play 5 times a week.... In the evenings and Sunday in the morning.
He is 9... So i don't think it could be hormones but then again... Who knows ..
The great point you also made was the injecting ahead of eating... We used to when he was first diagnosed and it made him low.... Most of the time so the Dr's suggested eating just afyer injecting.
This method did work well. But for months now he has been so high afyer food.... Maybe i should go back to 15 mins before eating??

 

[helli]

Has there been any suggestion to change his bolus insulin to something faster acting such as Ljumev or Fiasp?

With regard to detaching a tube pump when playing football, this is very easy. It doesn't matter whether it is once a month or 5 times a week. You only need to detach it during the footie game and then clip back in. I used to do this every time I went to the gym which was every day. The added advantage is that exercise typically lowers blood sugars/increasing insulin sensitivity and by detaching the pump, you are removing basal for that time period.

 

[Inka]

@Lion2012 Well, there we are - you have a simple thing to try, ie go back to injecting before eating 🙂 You’ll find he’ll probably need a different time in advance for each meal (ie breakfast, lunch, etc). As an example, with Humalog I inject 30 mins before breakfast, but only 10 mins before my evening meal. Experiment carefully and move the time in advance forward gradually in increments of 5 minutes. You may well find that solves a lot of the highs and erraticness.

I have a tubed pump. It takes me a second or two to disconnect it - literally. But honestly, I’d try moving the bolus forward first.

 

[Lion2012]

Has there been any suggestion to change his bolus insulin to something faster acting such as Ljumev or Fiasp?

With regard to detaching a tube pump when playing football, this is very easy. It doesn't matter whether it is once a month or 5 times a week. You only need to detach it during the footie game and then clip back in. I used to do this every time I went to the gym which was every day. The added advantage is that exercise typically lowers blood sugars/increasing insulin sensitivity and by detaching the pump, you are removing basal for that time period.

Thank you so much for the information. This is something i will definitely think about... The Omnipod 5 (when available) also looks very exciting but of course you cannot detach the thing sadly.
I appreciate your advice and i will most definitely take this on board

 

[Thebearcametoo]

Upload all the data to his team and get them to troubleshoot it. We do most of our changes ourselves but sometimes you can’t see the wood for the trees and your team can see all the data and adjust the ratios and suggest timing adjustments accordingly. I think he probably needs more insulin with his bolus and you may need to tweak the timing but they’ll be able to see everything. It’s also worth looking at what he eats and trying to give fat and protein with everything to slow down spikes.

A pump like the tslim would still be an option. Just disconnect it to play. Again his team would be best placed to suggest what he needs.

FWIW my almost 12 year old is on ratios of 1 to 7 for bolus and correction factor of 1 to 4 most of the day so the needs for insulin as they grow do change massively as they grow.

 

[Lion2012]

@Lion2012 Well, there we are - you have a simple thing to try, ie go back to injecting before eating 🙂 You’ll find he’ll probably need a different time in advance for each meal (ie breakfast, lunch, etc). As an example, with Humalog I inject 30 mins before breakfast, but only 10 mins before my evening meal. Experiment carefully and move the time in advance forward gradually in increments of 5 minutes. You may well find that solves a lot of the highs and erraticness.

I have a tubed pump. It takes me a second or two to disconnect it - literally. But honestly, I’d try moving the bolus forward first.

Hi there. Thank you so much for the information and indeed suggestion. I will try this from today and see how we go. From memory his evening meal was an immediate dose then eat back in the day due to finishing an intense football session.... And Carbs needed to get on board. I will keep you posted on progress with great thanks
Paul.

 

[Lion2012]

Upload all the data to his team and get them to troubleshoot it. We do most of our changes ourselves but sometimes you can’t see the wood for the trees and your team can see all the data and adjust the ratios and suggest timing adjustments accordingly. I think he probably needs more insulin with his bolus and you may need to tweak the timing but they’ll be able to see everything. It’s also worth looking at what he eats and trying to give fat and protein with everything to slow down spikes.

A pump like the tslim would still be an option. Just disconnect it to play. Again his team would be best placed to suggest what he needs.

FWIW my almost 12 year old is on ratios of 1 to 7 for bolus and correction factor of 1 to 4 most of the day so the needs for insulin as they grow do change massively as they grow.

Thank you for your advice, i did also query the fact that he is growing so so fast and this particular 'stage' of his growth is or could have huge factor in this too.
I have messaged the team, asked for a review ASAP as the last one seemed an eternity ago?... Thanks again

 

[Thebearcametoo]

We tend to need to make changes at least once between our 3 monthly clinics but there have been times where it’s felt like we were making changes every two weeks depending on growing cycles.


We’re three years into this and mostly feel confident about making changes but there are times when nothing seems to work. That’s the point we reach out to the team. You can feel like you’re chasing your tail and then it becomes frustrating and upsetting. I’m sure being on your own without someone else to talk it through with makes it harder. We’re all here as sounding boards and to give you some moral support.

 

[Lion2012]

Thank you yes it feels so much like a losing battle at times and find it such an achievement when his sugars are all within range for one day

 

[Lucyr]

If 10u background leaves him high and 12u background makes him hypo, what happens with 10.5u or 11u?

 

[Lion2012]

If 10u background leaves him high and 12u background makes him hypo, what happens with 10.5u or 11u?

Hi.. It was only last wed /Thurs we were told to increase to 12 then he hit Lows in the night.
I decided 9.5 first then up to 10.... Then as you say another 0.5 to see how he goes. His team always say give it a few days between adapting...

 

[ColinUK]

Can’t add anything to the conversation as I’m T2 not on insulin but wanted to say that you and him sound like remarkable people and you’re clearly doing a great job of being a dad.

 

[Lion2012]

Can’t add anything to the conversation as I’m T2 not on insulin but wanted to say that you and him sound like remarkable people and you’re clearly doing a great job of being a dad.

Hi Colin.. Thank you so much for those kind words.
Hope you are keeping well

 

[ColinUK]

Thanks Paul. I’m doing ok thank you 🙂

Hopefully you and Leo get the answers you need soon.

 

[Lion2012]

So.... Another crazy crazy day.
Bloods just seem to be stuck in the 19s!!!!.... Three separate readings three separate corrections (with extra 0.5 units of novo rapid) and three constant high readings of 19s........and this was only this evening
I do everything correctly, even extra monitoring through the night (hence why i am awake now writing this) now and still he's just high after high after high i am shattered.
He is currently in his last week of IV antibiotics for a wet cough that cannot seem to shift since we both caught covid last Xmas.... Cough still their as he enters his third and hopefully final week of IVs but these sugars have been off the scale for a while now.
I once had everything under control and we bother used his talent for football as a valuable tool to keep all level and in check.... His lungs And bloods a like.
Now, i feel utterly powerless and am completely exhausted trying to get on top of this..
I did think it was because he is not playing the game he adores for a few weeks maybe that would effect the routine of steady bloods etc but tbh even during the past few months of training, playing for his clubs his bloods before and after the sessions were so so high!!!!!!! If for example he was an 18 before training id give him a couple of jaffa cakes (for slow releasing carbs during) and factor this into his correction with an extra 0.5 on top.
STILL he comes off so high!!!!!!
I give up.
After breakfast.... Sky high. Insulin to carb ratio set at 1 for 5..... Can't get any lower!!!!!!!!!
High in the day.... Dinner and tea ratios set to 1 for 10 now...... Darent go any lower... This is crazy.
The ratios used to be floating around the 1 for 25..... 1 for 20 markers.....
Oh, i forgot to mention he is starting 5 days of steroids tomorrow too to help with this cough,meaning his bloods will be even harder to manage for s week

Ps.. Sorry guys i just needed to vent out at somebody or something and i must stress that my boy is not sick or ill in any way just has a wet cough and bloods that seem to be from one of the alien movies ‍♂️‍♂️

 

[ColinUK]

Feel free to vent without the need to apologise as it’s one of the most important things this space allows you to do.

Hopefully you both got some decent sleep.

 

[Lion2012]

Feel free to vent without the need to apologise as it’s one of the most important things this space allows you to do.

Hopefully you both got some decent sleep.

Finally got a couple of hours ... He woke on a 4.6... Good start so let's see
Thanks mate

 

[Pumper_Sue]

The Omnipod has been suggested.. Or the tslim pump but with my son playing academy level football this will just not stay in. His libre has been out a couple of times already as football just isn't accommodating to pumps.

Hello and welcome to the forum,
Oh wow what a super star your son is well done.

I can't help with the erratic gone wonky control, the pump (pod) though can be kept on no problem just pad it and use some elasticated bandaging to hold it in place. Vet wrap is fabulous for this.

I'm not sure if you know this but Henry Slade one of our England rugby stars has type1 diabetes have a look at his arm he has padding on it to hold his Dexcom sensor in place 🙂