Worried mummy advice needed please

[Mummytype1]

Hello everyone

My little boy 7 was diagnosed with type 1 in october 2021 after showing symptoms and was admitted into hospital for a week. He is on levemir and novorapid

His ha1cs have been good the last twice and we have overall good control.

Last week his readings were 16 - 20 monday Tuesday which are obviously quite high, wednesday he gets sent home from school high bloods sore tummy vomited everywhere bloods were down in the 2s admitted into hospital thursday friday hypos were bad and treated through a drip, got home sat bloods were not bad Saturday sunday. Monday 8 hypos tuesday 6 hypos wednesday 14 hypos! Today 6 hypos some going as low as 2.1. Also yesterday I could not get his blood sugars up it took 5 hours to get it up to 4.8.

I'm really worried what's going on his nurses and consultant dont seem worried and only told me to decrease his levemir a unit at night. Does this happen with bugs? What else could be causing it. Really worried about my little one.

Thank you anyone who can offer advice.

 

[rebrascora]

Hi and welcome.

Poor little chap he must be absolutely worn out with all those hypos and it must be incredibly frightening and wearying for you too. I imagine you won't be getting much sleep for checking his levels and trying to keep him safe.
I am quite shocked that your diabetes team are not overly concerned. Multiple hypos like that should be a the highest priority to deal with. What sort of dose(s) of Levemir is he on and when does he inject it? Ie is he just taking a single dose once a day and if so, morning or evening? Levemir is designed to be used as a split dose morning and evening but some clinicians start you off on a once a day injection with it and see how you get on.

Are the hypos occurring at particular times of the day and/or night or totally random?

It may be that his pancreas is suddenly managing to produce some insulin itself after a period of relying on the injected insulin. This is sometimes part of the honeymoon phase with diabetes and we have had another member just post this evening about the same problem with having multiple hypos each day and night for the past few days. Reducing the basal doses should help. With Levemir you can reduce the dose day on day to get real time results whereas longer acting basal insulins like Tresiba take 3 days for levels to stabilize after an adjustment, so they don't like you to make another adjustment during that period, but in a situation like this I think preventing hypos takes precedence over "following rules".

I sometimes go weeks or months when my Levemir doses are pretty stable and then I hit phases where I need to adjust them on an almost daily basis. I am currently increasing my Levemir doses because I have been battling high levels the last couple of days, but a few weeks ago I was needing to decrease them. It is a bit of a challenge to get the basal dose right. There is an element of intuition involved for me as well as logic and patterns/strategies. I see it as more of a dark art than a science, but the more experience you get the better you become at recognizing when it needs adjusting and by how much. I hope you are able to resolve the problem but do pester (if necessary) your son's team as it really isn't acceptable to be suffering repeated multiple hypos like that without more support, especially when you are still relatively newly diagnosed.

Can I ask if you are using Libre or finger pricking to get his BG levels and if Libre, do you double check hypos with a finger prick?

 

[Inka]

Hi @Mummytype1 How horrible for him! Could it have been a stomach bug? I find with those I can get a combination of highs and hypos. I presume the highs are due to the illness and the hypos due to messed up digestion.

As @rebrascora asks, is there any pattern to the hypos? Is his tummy still upset? Perhaps it’s a combination of the bug and the honeymoon? Decreasing his basal insulin is very sensible. I’d also watch his after-meal blood sugars and see if his ratios need changing too.

Not being able to get his blood sugar up must have been very scary. With dodgy tummies, I find Coke good and GlucoJuice too. It seems to get absorbed quicker. I then top up with carbs like a cake bar - ie something that it sweeter - and that normally helps.

 

[Mummytype1]

Hi guys

That's very much for your replies and advice.

His levemir is 4.5 units 8am and 5 units 8pm.

I check his blood via finger prick as he wasent keen on the libre and his skin reacted to the sticky stuff.

The hypos seem to be happening after dinner then go up around 9pm. He was like 17 etc during the night last night dont know what's going on at all.

Today hes been fine bm wise until just there after dinner been 7 8 9 all morning and afternoon then had dinner around an hour ago hes now 2.6 again!!

I am knackered not just with no sleep with worrying about him its horrendous worst wee period we have had since his diagnosis.

Yeah it all started with the tummy bug last week but hes not been sick in a few days and feels fine now so dont know what's going on with his blood at all.

Can I ask what is the honeymoon period how long does it last? What do I do for this. Sorry this is still so new first tummy bug etc we have faced so bit unsure. Thank you both again

 

[helli]

i think the honeymoon period is a red herring.
When adults are diagnosed with Type 1, it can take years for our beta cells (the ones that produce insulin) to die off. Over this time, they can occasionally burst into life for a day or two and produce insulin which makes calculation of the insulin dose unpredictable.
With children, the beta cells tend to die off pretty quickly.

I wonder whether your son's digestion is still not quite right after his tummy bug. If his digestion is taking longer, the glucose will reach his blood after the peak of his insulin and result in a hypo followed by a high.
As with a lot around diabetes, there is some trial and error involved but I wonder whether he needs to take his bolus later - maybe after eating rather than before.

 

[Thebearcametoo]

The honeymoon period can be very unpredictable. When first showing symptoms of type 1 diabetes there’s often still some activity in the pancreas creating some insulin but not enough for a healthy body. Sometimes with insulin therapy the body can recover a little and starts producing more insulin for a bit so you get sudden drops. It’s not easy to predict how long the honeymoon period will be and its effects can be unpredictable as you don’t know how much natural insulin will be produced each time. For my kid the honeymoon period lasted less than 6 months. For some kids it’s a bit longer than that. Sickness can throw all sorts of spanners in the works even once symptoms have resolved. It will all settle down again.


If you’re dealing with lots of hypos the give 10g for free carbs at the next meal when dosing. If you’re getting bounce back hypers (going high after treating a hypo) then it can be worth just waiting a little longer after the first hypo treatment before giving repeat fast carbs. If you’re getting hypos and then a later spike after a meal look at doing the insulin bolus a big later, maybe after the main course and before any dessert or even after the meal instead of before.

These periods of high effort management are horrible. Call your team if you need support - when you’re tired it’s much harder to be confident in your decisions even if you can work out what you think you should be doing). So soon after being in hospital our team would be checking in frequently anyway but if yours aren’t it’s ok for you to contact them on the out of hours and if you need it call the the childrens ward in the middle of the night. You don’t have to go through it alone.

It’ll all settle down again.

 

[Inka]

@Mummytype1 I agree with @helli that delaying the evening meal bolus might help. I’d also consider slightly reducing the bolus too. Tummy bugs can be a real nuisance with Type 1. I’m an adult and I still dread them because they mess control up. Hopefully things will gradually improve as he recovers fully.

 

[everydayupsanddowns]

Sorry to hear you and your little one have been having such a rough time

I wonder if your paeds team may not have seemed particularly concerned perhaps because they have seen it all before? Or whether their experience is that them showing lots of concern might distress parents and carers even more? I am sure they must be concerned, and wanting to give some sort of reassurance.

Was there a vomiting bug going round? Do you think his being sick was a bug, or might it have been connected to his having been high for a couple of days? Do you have a means of checking for ketones?

This must have been a really difficult time for you. Type 1 can be relentless, fickle and infuriating. Not to mention downright scary at times

Gove yourself credit for how well you are coping through this, and your stickability. Things will settle - hopefully sooner rather than later(!) - and then future wobbles will come. So the ‘fire fighting’ skills you are developing are really important.

Hang in there 🙂

 

[SB2015]

Sorry to hear that you and your son have had such a difficult time recently.

Catching a bug really messes up glucose levels, and then vomiting makes things more complicated if you have already injected for that food. T1 is a juggling act at times but we all get better at it, even though we still drop the balls sometimes.

As @everydayupsanddowns says your son’s team may appear unconcerned for a variety of reasons, but do reach out to them and share your concerns. Not only are they used to dealing with changes to insulin doses they will understand your concerns and be used to supporting parents.

If he is having a lot of hypos, which is exhausting both managing them and physically, a reduction in his insulin as the team have suggested makes sense. We all gradually get used to making these changes for a variety of reasons.

I hope that things settle down and that he starts to feel a lot better.