My 7 year old son with CF and type 1 diabetes

[Lion2012]

Good evening
We are into night 5 in hospital myself and my son (sadly mummy passed last year)
My son was recently diagnosed with type 1 diabetes... Well.. The bloods are still under scrutiny but it is being treated as type 1 as his levels when brought in were so so high
Leo has, CF too, and whilst I have this relatively under control using football as a main source of health check (plays 5 to 6 times a week academy level)... Thus diagnosis is proving even more of a mind mashing for me to control.
Yes it is still only very very early days but the reason why I have not personally gone home from hospital yet to incorporate these somewhat massive changes into our daily life is that my sons levels are still bizzarely unpredictable
I thought the insulin (slow releasing in the morning) and the novorapid pen before Everything he eats should bring his levels back down to somewhat normality?.... They have upped his morning slow releasing pen to 6.5
We leave hospital to play football across the road in the park just fir exercise and when i check his levels after EVERY bit of exercise they a brought down to 9.. 8....5.. Etc... But then as tea time looms and slowly throuought the evening it creeps up again to 13s.. 14s.... 22 one eve....
Baffles me it really does... Even with corrections set in the machine calculating units of insulin it diesnt appear to be bringing it back to 8 (the setting on the machine) as I try to check 2 hours after which I believe is the most vital peak time the insulin works.
This is why I am not ready to leave yet.
My question is.. Does it indeed take time to start being somewhat consistent?.....
And also I am aware leos diet CANNOT change as he relys on a high calory and fatty diet fir his CF so he is very much reliant on insulin soley to control food glucose.
Thank you in advance
Paul.

 

[Robin]

Hello, Paul, and welcome to the forum, it sounds as if you’ve got a lot on your plate!
One thing that occurred to me, is your son in any steroid medicine for his CF? If so, steroids can play havoc with blood glucose, so insulin doses might need to be increased to accommodate them at certain times of day.
You'll find as you learn more, that glucose levels play by their own rules, and no two people's are the same. (In children, growth spurts can disrupt them, for example) What you’ll find is, when you’ve settled into the insulin routine, and gained some experience of the sort of readings your son gets day in day out, that you’ll find the pattern for your son, and adjust the doses accordingly.

 

[Lion2012]

Good Robin and thank you for your reply.
He is not on any steroid based treatment at the moment no.
Thank you for your advice I guess I am ready to now introduce this into out home life and get some sort of a routine going.
Fingers crossed and thank you so much again
Paul

 

[SB2015]

Hi Paul and welcome to the forum.

It is not unusual for levels to be wobbly at the start, and the initial doses are a best guess for a starting point, from which they will gradually change these to match your sins needs. You and he will then become experts in adjusting things for all the different things in a day. As @Robin says Diabetes does sometimes have a mind of its own but it is manageable, and it sounds as if you are already an expert at managing his CF.

If steroids are involved in your son’s treatment of his CF that will also cause doses of insulin to be adjusted. When I take these I need to make big changes. You could mention this to the DIabetes Specialist Nurse if it is the case.

It is a lot to take in at the start, but it does get easier and it is manageable. It need not stop your son diong anything that he was doing before, it just takes a bit of planning and adjustments.

Keep in touch and ask absolutely any questions that you have. No questions are considered silly on here.

 

[SB2015]

Sorry Paul

I was typing whilst you were.
Without the steroids it will be easier to get the doses settled.
He can be back on the pitch playing again and may well feel a lot better than he did before.

 

[Thebearcametoo]

I’m sorry you’re both having to deal with this on top of everything else.

It’s still very early days and his numbers will be up and down so try not to get to bogged down by it all. Have you seen the specialist diabetes team? They will be able to help adjust doses and give you an idea of how to manage his varying needs. High fat and high calorie isn’t an issue with diabetes it’s just about matching the insulin to the carbs which everyone with T1D has to do. If he needs a lot of carbs then the insulin balance may take a lot of tweaking as some carbs are faster to be absorbed etc but pairing carbs with fat helps slow that down. Your diabetes dietician should be able to help you factor in his exercise too and adjust insulin for that as well.

In the early days you’re unlikely to get perfect control. What you’re doing is data collection and over the period of a few days or a week or two patterns emerge which help to see where insulin to carb ratios need changing and where insulin sensitivity is different at different times of day. Your team will help with this, you’re not expected to do it. Even once he is more stable it will need further adjustments as he grows and each clinic something changes in our doses (and often in between).

It’s a lot to get your head round. You will adjust though with the help of your team and it will get easier. We’re 6 months in and it feels so different to when my daughter was diagnosed.

You’re already coping with complex needs and he already understands what it is to have a chronic condition. You'll both adapt to this too.

 

[KARNAK]

Hello @Lion2012 welcome to the forum.🙂 Don`t forget you are a part of the equation, you need too look after yourself also. You will learn quickly enough and your son, keep in close contact with your/his Diabetic team. Any questions or problems try and contact your D team, if you cannot contact them we are here for you, take care our friend and your son.

 

[Lion2012]

Thank you so much for those kind words of support my friend it is so much appreciated

 

[Lion2012]

I’m sorry you’re both having to deal with this on top of everything else.

It’s still very early days and his numbers will be up and down so try not to get to bogged down by it all. Have you seen the specialist diabetes team? They will be able to help adjust doses and give you an idea of how to manage his varying needs. High fat and high calorie isn’t an issue with diabetes it’s just about matching the insulin to the carbs which everyone with T1D has to do. If he needs a lot of carbs then the insulin balance may take a lot of tweaking as some carbs are faster to be absorbed etc but pairing carbs with fat helps slow that down. Your diabetes dietician should be able to help you factor in his exercise too and adjust insulin for that as well.

In the early days you’re unlikely to get perfect control. What you’re doing is data collection and over the period of a few days or a week or two patterns emerge which help to see where insulin to carb ratios need changing and where insulin sensitivity is different at different times of day. Your team will help with this, you’re not expected to do it. Even once he is more stable it will need further adjustments as he grows and each clinic something changes in our doses (and often in between).

It’s a lot to get your head round. You will adjust though with the help of your team and it will get easier. We’re 6 months in and it feels so different to when my daughter was diagnosed.

You’re already coping with complex needs and he already understands what it is to have a chronic condition. You'll both adapt to this too.

Thank you so much for your positive and helpful response

 

[Lion2012]

Hi Paul and welcome to the forum.

It is not unusual for levels to be wobbly at the start, and the initial doses are a best guess for a starting point, from which they will gradually change these to match your sins needs. You and he will then become experts in adjusting things for all the different things in a day. As @Robin says Diabetes does sometimes have a mind of its own but it is manageable, and it sounds as if you are already an expert at managing his CF.

If steroids are involved in your son’s treatment of his CF that will also cause doses of insulin to be adjusted. When I take these I need to make big changes. You could mention this to the DIabetes Specialist Nurse if it is the case.

It is a lot to take in at the start, but it does get easier and it is manageable. It need not stop your son diong anything that he was doing before, it just takes a bit of planning and adjustments.

Keep in touch and ask absolutely any questions that you have. No questions are considered silly on here.

Thank you so much
Having now got a lovely routine going his levels in the am are good... Dinner time good... But tea time..... He is having constant hypos only ONE HOUR after he eats... Whether he plays football or not
I've tried reducing his insulin by 0.5 and still.. Hypo..
I've tried giving him raisins.. 10g carb afterwards to top his levels so he doesn't crash... Still... Hypo an hour after tea... Only one hour?!....
Driving me insane...
Could it be his carb intake is too high and fats too low meaning his carbs absorb too quickly?

 

[SB2015]

Thank you so much
Having now got a lovely routine going his levels in the am are good... Dinner time good... But tea time..... He is having constant hypos only ONE HOUR after he eats... Whether he plays football or not
I've tried reducing his insulin by 0.5 and still.. Hypo..
I've tried giving him raisins.. 10g carb afterwards to top his levels so he doesn't crash... Still... Hypo an hour after tea... Only one hour?!....
Driving me insane...
Could it be his carb intake is too high and fats too low meaning his carbs absorb too quickly?

You are doing brilliantly getting so much levelled out already. Well done.

If he is hypo after each evening meal basically there is a mismatch at that point between the insulin and glucose in his system. The hypo just one hour after he eats suggests that the glucose is not getting through as quickly as the insulin. As you suggest this could be because of the fat content in the meal. If there is a high fat content, this will lead to the carbs getting converted to glucose more slowly. If the full insulin is already in there that that will be active before the insulin, and so a hypo will occur. Some possible solutions to this
- spilt his injection into two and give half with the meal and half an hour later (or for Pizza two hours later)
- reduce the fat content in the meal (I now choose to avoid pizza for this reason)

Another possibility is that your sons carbs ratio is wrong for the evening meal. Mine change through the day and I need more insulin in the morning than I do in the evening. As with all things it would be worth discussing this with his DSN.

They must be so impressed with how you have got to grips with this.

 

[Lion2012]

Thank you once again for the prompt reply.
Sadly with his CF he needs a high calorie and high fat diet too... ...
During the day it is ok... Breakfast pop tart and his fortini multi nutrients shake
For lunch he has his pack up.. I calculate his carbs
Then tea... Around 5 or 6.... Is a nightmare.
I'm am now expecting a response an hour later of.. Dad I feel hungry!!!!
We had a meeting with his diabetes team yest and they upped his carb to unit ration at tea time to 1-35...still no different
I thought about giving him 0.5 LESS insulin to also give him cover but then thought... I shouldn't have to do that?...
Even the raisins I deliberately gave him afterwards didn't do the trick
He was 7.4 before... Then and hour later he was 3.8....
Crazy.....

 

[Lion2012]

He only has the same meals too...
Potatoes waffles and fish fingers with garden peas and ketchup
Or chips and chicken dippers with peas and sauce
Soemtines cocktail Sausages and chips or waffles with garden peas.... Always with cake for pudding