Generally terrified -3 year old just diagnosed type 1 diabetes- help!

[Snoopy10]

In shock at the moment. Packets of needles and books on carbs have taken over my horizon. Does anyone have any tips on surviving this one and a hopeful prognosis for the future in one diagnosed so young? Also how long if ever do they stop being terrified of every injection and when do you stop panicking about giving them snaks?! Thanks in advance.

That study is very interesting, thank you. I should get a better picture over the next couple of days with the new insulin doses. And will have the Dexcom fitted soon to track things more closely.

Blood sugar rising an hour after chocolate cake and then falling back down would be considered perfectly normal for non-diabetics. The only thing in the chocolate cake that wouldn’t have affected the blood sugar would have been the butter and eggs!

I used to test loads as I had T2, and those were the types of readings you were aiming for.

Hypo this morning- lowest yet! And she has a cold. No insulin with dinner and only 0.5 lantus.

Thanks trinity - nurse said 8 perfectly normal an hour after tea and 5.6 normal 2 hours after. Can’t understand the hypo unless her cold going means her insulin is going back up.

Are you going in today? What was the low reading this morning-you must be worried, was she symptomatic this morning?

The chocolate cake readings would be the same for my non-diabetic children.

The are other conditions that cause blood sugars to fluctuate and some children just do that when viral.

Really hope things get sorted for you today.

Thanks Eats 3.8 this morning- not terrible she complained of feeling cold and not well. She normally feels hot so this is not like her. She is fine now she has eaten. Going in tomorrow. I have had a virus for two weeks which makes me really tired but has no other real symptoms apart from being a bit achey. Worried it might have been that now.

Too much insulin can cause low blood sugar. So if she is having insulin when she doesn’t need it that might be causing the low readings in the mornings. Did they say when she should get the results back to find out if she really does have diabetes?

My son was diagnosed at the age of 4 ,he is now 24 .My advice would be to educate yourself as much as possible and to encourage your dc to also learn about their diabetes .Not sure if still relevant but under 16,s used to automatically be entitled to DLA when diagnosed .

Thank you trinity - they didn’t do antibody test so are doing tomorrow and there is a 3 week wait for results. She has been on minimal insulin today none at tea and only 0.5 lantus but as she had hypo yesterday am nervous tonight. Going to test at 8:30 and give biscuits if she is below 6.5 to avoid possible repeat of yesterday morning. Thanks for advice French. If they do confirm diagnosis then I will be doing a lot of research. She would be entitled to DLA which would help pay for glucose monitoring.

What time is she waking or what time are you catching the hypo? It may be worth setting an alarm for 30 minutes earlier than when she normally wakes to try and prevent the low.

As I think I have posted about before my children go low when ill & we are advised to wake earlier and give carbs the night before to prevent them going low.

She was 5 at 8:30pm much lower than last night when she woke up with a hypo. Hoping they take her off this tomorrow now.

With 5 at 8.30 and with this going on, I would set an alarm to test her at midnight and then if that is 4 or below I would treat with carbs and regardless of result set another alarm for 6am.

I am sure tomorrow will review things and give fresh eyes to what is going on.

Thanks Eats - what didn’t they suggest that. I am really worried tonight for first time. Gave 15g before letting her sleep - will test in two hours I think

What would be normal at midnight

Obviously this is just one opinion -

But I think 5 is low at 8.30pm, her body may kick in and control her own blood sugars over night but as she has had some lows and been on insulin you don't want her to drop lower over night.

I said test at midnight because of what you said about the 5 being lower than yesterday at a similar time.

I can only base it on a mix of my own experience and reading your story - if my son was 5 at 8pm he would be low by 7am and hospital have/would have advised us on those days to test at 10.30pm or midnight and give corn starch or carbs to prevent the low - but he has a different condition where he gets low blood sugars.

If she is non diabetic - 5 is normal anything for a child non-diabetic between 4 & 8 is normal and there is even scope to go a bit higher post food in children.

With diabetes for children you are aiming for 4 to 7 Pre food and 5 to 8 post food. But at the start of insulin and new diagnosis it is normal for these to fluctuate.

I am suggesting testing overnight because of the concern of the hypo.

It must be stressful for you. You are doing all the right things and tomorrow will get answers.

Eatsleavesmostly - most people with type one spend around half the day outside the range 4-10 mmol. It’s nothing to do with a new diagnosis as unfortunately the condition doesn’t stabilise.

Night testing is a very good idea.

OP - have they talked to you about the honeymoon period?

I gave her 15g carbs at 8:30 milk and banana - nurse seemed to think that would keep her going through the night. I am just worried as she was at 5.6 at 9.00pm last night and had hypo. They reduced insulin to nothing after lunch and 0.5 lantus overnight but she was still too low. She hasn’t reached 5.5 today.
T1 They did mention honeymoon period but they are concerned she is never high so may take her off it and monitor. I think they would have dropped the lantus tonight if she hadn’t already had it at normal time.

T1mum - Not from direct personal experience but yes I would imagine that the guidelines are not a day to day reality.

I am just citing normal from guidelines from the link I posted www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html

And only giving advice based on the information presented and my limited experience to offer advice until the morning when the op is being seen again.

What level is safe to leave her at, at midnight?

Thank you for your support by the way - very much appreciate the hand holding.

Did they give you a safe limit to not wake and treat?

Hard to give direct advise as for my children they go low and no concern about high blood sugars and I am confident about lows and preventing/treating those.

I would be happy with 5 or above, 4.5 I would be tempted to treat. But would set an alarm again for early morning.

Someone with more T1 experience may suggest different -

What have you been doing until now overnight?

No no safe limit- no suggestion to wake or test in night. Did they give you one? Can’t imagine getting her to eat at midnight! How many gs would you give if she were 4.5?

I think on multiple daily injections lots of people are advised 7 or 8 mmol for bedtime. My son used to skyrocket then crash so a bit different. One night of higher BGs isn’t going to do any harm though so if you are worried I would see if she can drink a juice carton.

How was the night and morning?

Will be thinking of you at the appointment today.

I'm so sorry this is happening Snoopy, I think I get some of what you are going through from the experience with my dc. As pp have said it's almost like grief, I think I was grieving for the healthy, carefree dc I had before the diagnosis and struggling to accept the new situation with the enormous and very frightening T1D label.
It is the uninvited guest in your home, at every mealtime, every snack time, every bedtime, every hour of every day and every night, there is no day off. There is a whole new medical subject which you have to be suddenly expert in.
People looking in from outside the family will not see the 24 hour work you're putting in to this, they'll assume that dc will have a couple of injections and maybe some of that special diabetic jam. I used to want to yell at these people 'Actually, what I'm doing is keeping them alive every single day and you can stick your special jam where the sun don't shine'
You will get through these early days and weeks though and eventually it becomes the norm. It's not an easy journey however, people talk a lot about 'acceptance' and that one word is quite powerful. It is hard but once I accepted the diagnosis fully and stopped being angry at the unfairness of it all life became a little easier.
I hope you have had a good night with lo.