1. Welcome to the Diabetes UK Forum
    Dismiss Notice

Need advice for t1 child

Discussion in 'General Messageboard' started by annie81, Jul 11, 2019.

  1. annie81

    annie81 Member

    Relationship to Diabetes:
    Parent
    hey everyone

    My 5 year old was diagnosed nearly 6 months ago, he’s on humalog during the day and abasaglar at night, we recently tried a pump but he’s having non of it and nurses said to not push him but try again later in the year(I’m fine with this) my concern is that we are struggling to keep our sons blood sugar in the green he is having constant hypers, we don’t get appointments with diabetes clinic unless we ask to see someone and then it’s just the nurse, I’ve seen a dr 2 times in 5 months and the dietician maybe 3 times. I’m not sure if this is how it is for everyone but I just don’t know what to do now, could it be because he’s in the honeymoon period they talk about? I feel so sad for him that we are having a hard time controlling his levels, I suggested a low carb food routine and was told no that he doesn’t need to have that and I’m just now feeling stuck, I’m guessing the ratios need to be altered again but really I don’t know I’m just trying to do the best with what I have just now so if anyone can offer some advice I’d really really appreciate it
     
  2. Kaylz

    Kaylz Well-Known Member

    Relationship to Diabetes:
    Type 1
    I presume you are under the care of a hospital team? if so call them and demand an appointment with a DSN

    I wouldn't say it would be the honeymoon period as during the honeymoon period we tend to have hypo's not hypers and we can require very little insulin while going through it

    it can be tough enough for us adults but it's even worse with growing children

    So yeah I'd call your team and explain your concerns about your sons hypers and tell them you need to see someone, if not then you will write a complaint about the lack of care your son and you are receiving

    Good luck hun!
    xx
     
    SB2015 and annie81 like this.
  3. Thebearcametoo

    Thebearcametoo Well-Known Member

    Relationship to Diabetes:
    Parent
    The nurse is exactly the person you need. A specialist diabetes nurse will be able to help you adjust levels and tweak things between clinic appointments. For day to day management our nurse is far more useful than the doctors in the team. We regularly email the data from our meter to our nurse and get information back in tweaking either the basal or bolus dose. The main thing I have learnt is that nothing stays the same with diabetes and frequent changes will need to be made to dose ratios so do keep in touch with your nurse. The heat, growth spurts, differing levels of activity, etc all change how his body responds. Spot the trends and adjust for them until the next one appears (we’re currently in a ‘keep getting hypos’ trend instead of the ‘mostly being hyper’ one of a few weeks ago).
     
    SB2015, annie81 and Sally71 like this.
  4. everydayupsanddowns

    everydayupsanddowns Moderator

    Relationship to Diabetes:
    Type 1
    Hello @annie81

    Welcome to the forum.

    Sorry to hear about your little one’s diagnosis :(

    The good news is that there has never been a better time to be diagnosed with type 1 diabetes. Improvements in treatment, insulins and tech mean that a long and happy life with well-managed diabetes is more possible than ever before.

    I agree with your nurse about low carb, there is research that very low carb diets may cause growth and development problems for young children. Much better to have an ‘everything in moderation’ approach IMO - and especially as he grows, to be able to enjoy treats, eat out, and other stuff with his mates. Fitting diabetes around him, not the other way around.

    Have you been advised about carb counting yet? Monitoring the amount of carbohydrate in meals to match the doses (or changing the doses to match different meal sizes). It’s a really really useful technique, and while it won’t always be mathematically perfect, it can form the basis of good diabetes management.
     
    SB2015 likes this.
  5. annie81

    annie81 Member

    Relationship to Diabetes:
    Parent
    Thank you both so much I have called the diabetic clinic and just waiting on the nurse calling back to arrange an appointment. My son starts school in August and obviously the school will be the ones giving lunch insulin which in itself makes me nervous haha but with the constant hypers I worry more but will definitely suggest what thebearcametoo does and email meter reading through and get advice on adjusting more frequently, part of me wonders if having a pump or cgm would make things easier, be able to spot the levels quicker and adjust before they rise too high etc.
     
    SB2015 likes this.
  6. annie81

    annie81 Member

    Relationship to Diabetes:
    Parent

    We do carb counting yeah but find that even with putting in the correct amount in and delivering what insulin the meter says he still ends up way off target 2 hours later and we are confused but I guess if things need tweaking throughout life then I guess this is something we need to get used to, if only it could be what carbs you put in and the insulin amount you gave just worked first time haha, his little body get bruised and I just hate seeing him like this, I haonstly don’t think I’ll ever be ok with him having it, I’d give him my pancreas if it wasn’t a case of he’d need immune suppression forever. We have found that they amount they want him to have for dinner is 45g carbs but he always says he’s still hungry with that so we have been going over that, clinic know this and haven’t mentioned it, we have given him insulin to match what he eats but it seems to make no difference
     
  7. everydayupsanddowns

    everydayupsanddowns Moderator

    Relationship to Diabetes:
    Type 1
    Aha! Yes. Tweaking and adjusting will be endless I’m afraid. What are levels like 4-5 hours after eating. At 2 hours there’s probably half the dose still left to run, so it’s a bit early to call it really.

    If after 4-5 hours you aren’t back to where you were pre-meal (assuming no correction added and a standard meal not pizza or something tricky) then either a) the dose wasn’t enough or b) the dose was right, but his basal is set too low and some of the meal dose is being used to cover basal need.

    But yes, you are right. There are never ‘right ratios’ just ‘right ratios for now’ :confused:

    One useful ‘rule of thumb’ I found quite late on in my diabetes career, was John Walsh’s estimate of when ‘standard’ insulin to carb ratios tend to drift. He’s American, so uses Lbs, but essentially if you take your weight in kilos and consider that figure as grams of carb, that’s likely to be more or less the tipping point. So for me, anything up to 60-70g carbs needs one ratio and above that I need more insulin.

    Not sure if that applies in kids?!
     
    SB2015 likes this.
  8. DaveB

    DaveB Well-Known Member

    Relationship to Diabetes:
    Type 1.5 LADA
    Hi. Can I just ask what you mean by 'what the meter says' and also what you mean by putting in 'the correct amount'? Ideally the meter would be showing a good reading at the start of a meal and the Bolus amount to be injected would be based on your Son's typical Bolus ratio. The fact that the reading is way off target 2 hrs later implies the ratio being used needs tweaking or you are not guessing the carbs correctly; something we all find difficult at times. Has your son's Basal amount been balanced? The Basal is needed to balance the liver's constant background glucose output. It may need tweaking if your son's blood sugar tends to drift upwards or downwards after fasting for a few hours. Your DN should provide guidance on these things. I'm sure having the (in)famous balanced diet makes sense avoiding excessive carbs and having low-GI fibrous ones in preference to white flour based carbs. I wonder why a figure of 45gm carbs is being recommended? I suspect for children with T1 there is effectively no honeymoon period or it will be very short; in adults it may well be much longer. BTW when you say 'hyper' do you mean 'hypo' which is where blood sugar goes very low; hyper is when it goes very high?
     
  9. annie81

    annie81 Member

    Relationship to Diabetes:
    Parent
    Tha

    That is an interesting thing especially for when he’s older. It makes sense that 2 hours after meal there would be still some insulin in the system not yet used up by the meal. We have been told from the start to check blood every 2 hours well it’s 2 hours after every meal and obviously just before the meal so when we look at his meal plan from breakfast to lunch and dinner he is being checked every 2 hours, when we check his 2 hours after dinner his reading can be 14 or higher and it started at 7 before he had dinner, we tend not to have pizza much, he loves spaghetti bolognese and can have double helpings of that but we know we need to add an extra 0.5 units of insulin to cover the pasta being slow release, my son is quite a fussy eater that we are trying to change and get him to eat more of a variety of foods, there is more options out there that are low to no carb I think if he would try new thing.would certainly help fill him up within the allocation amount of carbs per meal/day
     
    SB2015 likes this.
  10. annie81

    annie81 Member

    Relationship to Diabetes:
    Parent

    Yeah we type in the card amount into his meter and it tells us how much insulin to give, we were told not to count any sauce, gravy etc into the carb amount of his meal so say last night he had steak pie and potatoes I weighed both the items in order to get the carb amount which I think was correct, I’m not sure why the 45g amount was set but I’ll certainly ask now. No my son doesn’t have many hypos but does tend to go high very often has been as high as 17-18 2 hours after a meal but can be as low as 5.9 before he meal so I figured the ratio was wrong but really have no clue on whether it’s the bolus or basal ratio that’s needing adjusted or both
     
  11. everydayupsanddowns

    everydayupsanddowns Moderator

    Relationship to Diabetes:
    Type 1
    If he is getting very high BG at 2 hours, but then much nearer to being in range at 4 hours it starts to look like dose timing to me. Are you allowing any time between injecting the dose and eating the food? The requirement can vary depending on time of day and the sort of food, but many people find giving the insulin 10, 20, or 30 minutes head start makes a huge difference.
     
    SB2015 and rebrascora like this.
  12. Bruce Stephens

    Bruce Stephens Well-Known Member

    Relationship to Diabetes:
    Type 1
    It's something you really need to talk about with your healthcare team. That kind of effect (with adults, at least) can often be resolved by injecting the bolus a bit earlier (so 20 minutes or so before eating, or maybe more (or less), depending). But it's possible your healthcare team will be OK with such peaks.
     
  13. annie81

    annie81 Member

    Relationship to Diabetes:
    Parent

    Well interestingly we tend to inject roughly 5 mins before we serve the meal, but might be worth injecting sooner, we have been told we have 15 mins from injection to eating so maybe going closer to the 15. We have to check bg 5 times a day, on the occasion when we have been out and missed his check 2 hours after lunch and end up checking it at say 4 hours post lunch we find his result looks so much better and less frightening than the 2hr check, I just figured that the reading 2hrs after a meal should look the same as the reading before the meal, most children I’ve read about all happen to be on pumps and their levels seem to be so much better, this could just be due to experience and being out of the honeymoon period, being able to delay release of insulin on the pump idk maybe I’m just over thinking that the pump would make things easier
    I hate diabetes, I’d rather have it than him
     
    SB2015 likes this.
  14. Kaylz

    Kaylz Well-Known Member

    Relationship to Diabetes:
    Type 1
    @annie81 every diabetic (even those on pumps) will experience a spike in levels after eating, non diabetics get that spike too!

    The trick is to try and stop huge spikes and getting it limited to no more than about 3mmol from the pre meal test, believe me it takes a lot of time and effort but it is so worth it

    You say you have been told you have 15 minutes from injection to food but that isn't always the case, there are some here that need to bolus up to an hour before they have breakfast for instance

    It's such an individual thing NOBODY can tell you what's going to work for your son

    Try pre bolusing by x amount of minutes and if that doesn't work, add a couple more minutes on to where you find a time that works it WILL require a lot of testing to find out where that 'special' pre bolus time is and it also may vary throughout the day and what sites you are using

    For instance my breakfast I do my left thigh and wait 15 minutes, dinner is the right thigh and 10 minutes and my tea is my tummy and only 5 minutes

    Has he got a libre? it may be worth asking about
    xx
     
    SB2015 likes this.
  15. rebrascora

    rebrascora Well-Known Member

    Relationship to Diabetes:
    Type 1
    I find that I need to inject as much as an hour before food in the morning but usually 20-30 mins in advance of eating later in the day. What helped me have the confidence to do this was testing more frequently so that I could see when the insulin was starting to have an effect. ie. I tested half an hour after injecting and my BG was usually higher in the morning than my earlier fasting level, so that gave me the confidence to wait a bit longer before eating. I might test again at 60 mins after injecting on a morning and if it looked like it was starting to go down, I would eat but I have waited longer on occasion. I respond very quickly to hypo treatment, so I know that I will come up quickly if I need to. The type of food is also relevant. If it is a breakfast cereal with quite a lot of sugars in it, it will spike quite quickly, so you can perhaps afford to wait a bit longer than usual before eating. If it is something slow release like porridge, splitting the bolus into 2 injections, one well before eating it and one an hour after eating might be beneficial, or perhaps avoiding porridge altogether for the time being.
    How we respond to food really can be an individual thing and I can understand not wanting to turn your son into a pincushion, but more frequent testing will give you a better understanding and confidence to experiment in order to find what works best..... at least it has for myself.
     
    SB2015 likes this.
  16. DaveB

    DaveB Well-Known Member

    Relationship to Diabetes:
    Type 1.5 LADA
    Hi again. Thanks for the reply. You seem to be getting some good guidance from the nurse but need a little bit more. Be aware that in theory we all need to add a bit of insulin for proteins as well as carbs but it's a small ratio. So if your son is having a lot of meat in a meal bear that in mind. Where you are getting large spikes after a meal it's more likely to be a Bolus problem rather than Basal? Also be aware that meals with a lot of fat will take longer to digest so insulin timing needs to change and the 2hr test point may need to be nearer to 3hrs.
     
  17. Bruce Stephens

    Bruce Stephens Well-Known Member

    Relationship to Diabetes:
    Type 1
    Worth considering, I guess. I don't recall the age range that it's recommended for, but I'm guessing 5 would be a bit young (even if it worked, I'd guess there's a big chance of them not being happy with it and removing it (either by picking it off or accidentally bumping it on doors, etc.)).
     
  18. grovesy

    grovesy Well-Known Member

    Relationship to Diabetes:
    Type 2
    I thought it was 3.
     
  19. Kaylz

    Kaylz Well-Known Member

    Relationship to Diabetes:
    Type 1
    It's approved from the age of 4, even a 2 week trial may be enough to se whether he would tolerate it, I've seen kids that age with them that are also rather proud to show it off
    xx
     
  20. Bruce Stephens

    Bruce Stephens Well-Known Member

    Relationship to Diabetes:
    Type 1
    No, that's not at all expected (unless the meal is unusually low in carbs, I guess, or you're really lucky). It's completely normal for BG to rise after eating, then fall again before the next meal. (One of the Libre videos suggests the 2 hour mark ought to be about when BG is leveling out.)
     

Share This Page