Feeling petrified

[Tj1]

Hi, my 4 year old son was diagnosed type 1 on Saturday, this was caught early so thankfully he had no serious symptoms or illness. I am a nurse so have an understanding of diabetes, which I am not sure is a good thing right now. He had been running high since Saturday, which I am starting to understand is normal in the beginning. However tonight before bed his BM was 8.9, much lower than it has been, I retested 2 hours later and it was 3.8. When woken he seemed quite confused (could be as he was woken), therefore I used gel to treat and gave a biscuit. MY question and concern is what would of happened if I had not tested. Would he of woken, would it of continued dropping? I have been testing during the night, but normally later around 2am. I have been trying to read for advice since this happened, but you can read really frightening stories.

MY fear and anxiety around this is heightened, as yesterday was 2 years since my daughter was born asleep. I guess I want reassurance or advice around children sleeping and overnight lows.

Many thanks for reading, a very anxious mummy.

 

[Mrs Vimes]

TJ1 I'm not a parent but I'm in a Facebook club called TYPEONEGRIT. If you are on Facebook I'd recommend it. They are mostly T1 parents. Hate to say it but they don't seem to get much sleep.

3.8 it not too bad but if he is used to running higher than normal then it will probably feel like a proper hypo.
Obviously you were right to treat. I wake up with low sugars and treat myself. I think it's different for each person.
You are a nurse so straight away your son has a massive advantage. You may find you are going to have sleepless nights testing until you've got his routine sorted.
I know what you are thinking might have happened. I'm not going to say it except it is exceptionally rare. The liver kicks in with a sugar bomb as part of its feedback mechanism to counteract lows.
This sometimes does not work due to alcohol and I think he's a bit young for that.
I'd highly recommend typeonegrit. I'm sure a parent will be along soon to advise.
Best wishes.

 

[azure]

Hi

I'm moving this to the Parents Section for you but in the meantime you could have a read around the forum.

I'm a parent but none of my children have Type 1 - just me. However, that doesn't mean I don't worry sometimes about them getting it. Like you, night time hypos would be my main concern.

My advice is firstly to speak to your daughter's diabetes team and let them know your concerns. They should be able to provide advice and reassurance.

The only thing you can do in the meantime is set alarms to check his sugar during the night. I don't know if you'd feel happier having him sleeping in your bedroom these early days? That might help you relax a little.

Long term, you may want to look into an insulin pump (there's a section here on the forum about them). These allow insulin needs of each person to be met far more accurately and can reduce the risk of hypos. I have mine because of nighttime hypos. You may also want to look into a CGM (continuous glucose monitor) which would help you peace of mind.

If you can tell us about your son's insulin regime that might help get more advice eg how many injections does he have. Also, do you count carbs?

Finally, don't panic and don't think the bad things you've read are common. It's early days. You'll get a grip on this

Best wishes to you and your son.

 

[Tj1]

Hi

I'm moving this to the Parents Section for you but in the meantime you could have a read around the forum.

I'm a parent but none of my children have Type 1 - just me. However, that doesn't mean I don't worry sometimes about them getting it. Like you, night time hypos would be my main concern.

My advice is firstly to speak to your daughter's diabetes team and let them know your concerns. They should be able to provide advice and reassurance.

The only thing you can do in the meantime is set alarms to check his sugar during the night. I don't know if you'd feel happier having him sleeping in your bedroom these early days? That might help you relax a little.

Long term, you may want to look into an insulin pump (there's a section here on the forum about them). These allow insulin needs of each person to be met far more accurately and can reduce the risk of hypos. I have mine because of nighttime hypos. You may also want to look into a CGM (continuous glucose monitor) which would help you peace of mind.

If you can tell us about your son's insulin regime that might help get more advice eg how many injections does he have. Also, do you count carbs?

Finally, don't panic and don't think the bad things you've read are common. It's early days. You'll get a grip on this

Best wishes to you and your son.

Hi, Thank you for your reply and moving me to the correct place. My son Oliver was only diagnosed Saturday so it's still a massive scary learning curve. He is on Levemir 6 units given at about 8pm and Novorapid 2 units before breakfast and 2.5 units before lunch and dinner. We are trying to get into a routine but Christmas is not helping.

He has been running high since his diagnosis, although with some good readings at times. The diabetic team want this to be a gradual decline so he does not feel unwell. He has no ketones when high. I think the hypo may of happened as he had a busy day playing and running around, the first sine diagnosis and then had no bedtime snack. He is dropping massively overnight anyway, from 16-19 at bedtime then 5-8 in the morning. I predicted this would happen as his bedtime reading was only 8.9 last night, 2 hours later 3.8. We struggled to keep it up all night. Today he is jumping from 10-12 per meal to 23 after then back down to 10, before the up and down were better.

He is ratty today and not letting us do his sugars and insulin, where he had been so good before. He has a little cough and is reluctant to eat, it's all a big fight. Not sure if he is feeding off our stress or is just feed up from all the sugars and interruptions overnight.

We are all shattered and very very stressed.

 

[Tj1]

TJ1 I'm not a parent but I'm in a Facebook club called TYPEONEGRIT. If you are on Facebook I'd recommend it. They are mostly T1 parents. Hate to say it but they don't seem to get much sleep.

3.8 it not too bad but if he is used to running higher than normal then it will probably feel like a proper hypo.
Obviously you were right to treat. I wake up with low sugars and treat myself. I think it's different for each person.
You are a nurse so straight away your son has a massive advantage. You may find you are going to have sleepless nights testing until you've got his routine sorted.
I know what you are thinking might have happened. I'm not going to say it except it is exceptionally rare. The liver kicks in with a sugar bomb as part of its feedback mechanism to counteract lows.
This sometimes does not work due to alcohol and I think he's a bit young for that.
I'd highly recommend typeonegrit. I'm sure a parent will be along soon to advise.
Best wishes.

Hi, Thank you so much for your reply and kind words. Xx

 

[azure]

@Tj1 Yes, it's wise to get his sugars down gradually. Could it be Christmas making him less co-operative? It's a miserable time to be diagnosed, especially if you're a child.

If you aim for management not perfection over these early days, you may not get so stressed. Remember his body will be adjusting too.

Are you keeping detailed notes about his tests and insulin and food? That will help his team make adjustments as they'll see exactly what's going on.

You didn't mention if you carb count. That's a key thing ultimately for good control. But at the moment I imagine his team are just goung to see how he goes on his current insulin doses.

If you know the reason for the hypo (lack of bedtime snack?) that should help a lot as you know it didn't just come out of nowhere.

Keep calm and don't let diabetes be the focus for your son (even though it'll be at the very front of your mind). Let him see that you're not panicking (even if you are!) and that it's not the end of the world. It can be controlled

 

[TorqPenderloin]

It would be wise to speak with your son's doctors about the timing of his Levemir.

Many people (including myself) have to split their levemir doses into twice/day. I inject with the assumption that each dose will last about 16 hrs.

If the same were true with your son, his basal (levemir) would be strongest while he sleeps and weakest in the afternoon/evening based on the time he insects (8pm)

Another thing I'd discuss with his team is why he's on set doses rather than a carb counting approach. If dinner for him usually includes lots of meats and vegetables, but not many grains 2.5 units may be way too much.

The last thing to remember is that he's a growing boy and that's going to cause a major draw on anything he eats. For a sedentary adult, those extra carbs/calories would likely be turned into fat, but he probably has a super high metabolism plus he's still developing.

Just throwing out ideas to discuss with his healthcare team. Nothing more.

 

[Tj1]

It would be wise to speak with your son's doctors about the timing of his Levemir.

Many people (including myself) have to split their levemir doses into twice/day. I inject with the assumption that each dose will last about 16 hrs.

If the same were true with your son, his basal (levemir) would be strongest while he sleeps and weakest in the afternoon/evening based on the time he insects (8pm)

Another thing I'd discuss with his team is why he's on set doses rather than a carb counting approach. If dinner for him usually includes lots of meats and vegetables, but not many grains 2.5 units may be way too much.

The last thing to remember is that he's a growing boy and that's going to cause a major draw on anything he eats. For a sedentary adult, those extra carbs/calories would likely be turned into fat, but he probably has a super high metabolism plus he's still developing.

Just throwing out ideas to discuss with his healthcare team. Nothing more.

Hi, thank you for responding, I was thinking the Levemir may be a little high, particularly as we get better control and is not so high in the evening, which is starting to happen.

Our diabetic nurse, briefly discussed carb counting, but felt as it was Christmas and most services close for this period to discuss on Tuesday.

 

[Kristin251]

No need to report. I deleted it. Simply suggesting ways to have lower insulin needs to avoid hypos I don't think it irrelevant to anyone having hypos.
I'm out of here!

 

[azure]

@Tj1 Also, it may be that his higher than normal sugars are making him feel irritable and uncomfortable and affecting his mood.

I'm glad his DSN mentioned carb counting. It's not hard and it really does help control

 

[Tj1]

@Tj1 Yes, it's wise to get his sugars down gradually. Could it be Christmas making him less co-operative? It's a miserable time to be diagnosed, especially if you're a child.

If you aim for management not perfection over these early days, you may not get so stressed. Remember his body will be adjusting too.

Are you keeping detailed notes about his tests and insulin and food? That will help his team make adjustments as they'll see exactly what's going on.

You didn't mention if you carb count. That's a key thing ultimately for good control. But at the moment I imagine his team are just goung to see how he goes on his current insulin doses.

If you know the reason for the hypo (lack of bedtime snack?) that should help a lot as you know it didn't just come out of nowhere.

Keep calm and don't let diabetes be the focus for your son (even though it'll be at the very front of your mind). Let him see that you're not panicking (even if you are!) and that it's not the end of the world. It can be controlled

Thank you again, you think you just start to get your head around something, then something else happens, he has spiked a temperature and refusing to eat as he has a sore throat. So have been advised to reduce the insulin if needed. We seem to be doing every scenario within a week.

I hope it gets a bit easier in time and we can start carb counting and adjusting the insulin accordingly. I will feel much more in control. I also hope to discuss a pump and someone has mentioned a similar device that records blood sugars, with the diabetic nurse next week.

 

[Derekwj37]

You