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.

My friends little girl was diagnosed at that age. It will in time be such a routine you will forget how you feel today. The only different thing I can add to this is she buys a device that the little girl wears on her on that her mom scans to check her blood sugar levels. To avoid finger pricks all the time. I know they aren't (yet) on the NHS though but it might be worth looking into. I can't remember the name of them though sorry!

It is grief. Everything suddenly becomes a lot less certain and opportunities and chances are suddenly gone. Everything that should be easy is hard and childhood is gone.

However let's hope the op's dd has been misdiagnosed - it certainly sounds like there is a good chance. xx

Hi op. Another type1 here. I’ve been relatively recently diagnosed as an adult.
In my experience because it was caught and treated so quickly, the beta cells in the pancreas started working again so my insulin needs weee very low & this continues to be the case compared to other type 1s who have had it for many years.
So it could be that or it could be that she was unwell in general and produced ketones.
I think taking her off it altogether and seeing how her blood glucose fares without any could be the way forward.
Any Lantus

Hi Op - how did you get on at the hospital?
Hope you have a good plan and all things have been reviewed for you, which hopefully will mean a more confident few days for you both.

Thanks for all your messages, and for your story Ginger - Lambrusco might help right now! Yes grief is right and ‘childhood lost’ sums up some of the reason I feel sad. Right now she is off all insulin and I am to test her every 4 hours . So far nothing above 5.3 today. But as you say Ginger could be the 0.5 dose of last night’s Lantus. She still has to have biscuits tonight just in case and has had a day of lots of potato and bread to test. I have no idea what would normally happen to her levels if she was eating this as a diabetic without insulin so I don’t know what the readings really mean. Now it’s a waiting game till docs review next week. Thanks for the wonderful, support you have all been amazing. Diabetes is certainly an unseen parallel universe and whatever happens I will always be aware of it now.

eating lots of carbs will make your blood sugar rise. If you are type 1 then you won’t have insulin in you to deal with it and bring it back to normal levels. If you are type 2 then you have insulin but it is faulty and doesn’t work, so again you can’t get it to normal levels and if you don’t have diabetes then your body will just get on and deal with it using the insulin your body produces.

(There are of course other types of rarer diabetes too)

Thanks Trinity I can’t tell if the Lantus would still be helping to bring it back to normal levels - she had 0.5 the day before yesterday. If she ate carbs now would it still be working?

I doubt it would make much difference now to be honest.

I'm keeping my fingers crossed for you that the high BGs at diagnosis were just freak high numbers caused by an illness or something. Other possibilities would be very strong honeymoon, or very, very early stage T1D (they know now that T1D develops over a much longer period than previously thought before it becomes symptomatic). My daughter (not my son with T1D) had a random high glucose with ketones when she was ill a couple of years ago and we have not caught a high since.

T1 can take years to develop. Trialnet shows that antibodies are present first and then abnormal glucose but even once some abnormal glucose levels present it can still take more than two years for it to develop into frank diabetes.
A GP will tell you t1 is fast and I think once symptomatic it is fast but it can kind of rumble on for a while undetected first.

T1 mum that is amazingly reassuring news. Will keep you posted - holding my breath for today’s levels.

Thanks Waiting. I think she will have the antibody test when we go back to doc. Obviously it could still develop years from now even if this event is totally unrelated. Even if this is a false alarm I will still be on the look out from now on.

Happy New Year OP - hope everything has been ok and the new year brings an answer.

Thanks Eatsleaves. Happy New Year to you too. Today we went back to doc after 4-5 days completely off insulin and they reversed the diagnosis! We are to monitor her for the next 6 weeks but they think it was a virus which raised her sugars. They retook her Hba1c and the result was 34 - she hasn’t had a reading over 5 in the last 2 days and I have fed her masses of carbs to check. She will be glad to be off the bread, chocolate and potatoes! I can’t tell you how relieved I am but I know you will be able to imagine. Her grandad had t1 so I will still be in the lookout from now on. Still have to check her every day first thing and 2 hrs after one meal a day. They felt confident enough not to take any more blood or do the antibody test. They said it was very rare to get a false positive but they do happen - and I won’t be completely relaxed till we have got through the next 6 weeks. But a great start to the new year! I am so grateful for all the support I have had on here and I’m thinking of you all who are embroiled in the daily, hourly world of t1. I have a new found respect for those dealing with the huge scale of the challenge presented by that diagnosis which the world doesn’t see. I hope this is it for my dd but if it isn’t I will know where to turn to for support - it feels so unfair that anyone should have to go through this - especially children and their parents. Thank you all again so much Xxx

Such good news! The morning testing will be interesting over the next 6 weeks as if any condition that impacts blood sugars is brewing you will pick it up there.

My children don't have T1, but one we have to test each morning has is prone to lows over night and the other we only test when unwell.

So pleased that you have answers though and a clear plan and fingers crossed the next six weeks give all lovely straightforward readings.

Thanks Eatsleaves - I will definitely be holding my breath for the next few weeks!

@snoopy10 - I'm so happy for you. This is absolutely brilliant news. I was worried about raising false hope for you but it really sounded like a misdiagnosis from what you described. I wouldn't wish type one on anyone and even if it does reappear in the future you will have the benefit of her being older. It's really hard for those with toddlers.

@eatsleaves - it's not the morning BG which is significant in type one. The pancreas often kicks in overnight in the early stages of type one. The best time to test is later in the day after a very carbohydrate heavy meal. I'm sorry to have to challenge something you are saying again, but I don't think you have any direct knowledge or understanding of type one diabetes, so it's not a great idea to be making statements without knowledge. I would hate someone to think they were in the clear because of a fasting BG.

Hi T1 - I was offering support and alluding to the suggestion that testing in the next few weeks, including in the morning, would possibly be indicative of conditions that affects blood glucose levels.

I wasn't saying that the morning testing would show up T1 in the next few weeks.

I think the OP understood that and all along it was apparent that she had a medical team given medical advise and the forum was/is to share experiences.

I missed this update yesterday-- what wonderful news! I did have my fingers crossed for you, I must admit, but didn't want to raise false hopes. What a relief for you all!

Just seen your update - what great news!