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.

Thanks snoodle just seen your post. Lovely to hear about your baby! Ice is a good idea. She seems to be adjusting well. Having Dexcom training next week so hoping this will make everything easier.

It sounds like she needs more specialist tests, have they said to continue as normal?

A random blood glucose over 11 can be diagnostic but would need a further test.

When are you seeing the consultant or being seen again by specialist team?

I am sure you have read lots over the last few days and it must be super stressful.

Are you under a good hospital with good paediatrics or is it worth asking for a referral to a bigger/more specialist hospital?

The hospital have been amazing and have very good peadeatric care. Support is great. I guess they are taking all precautions while they find out more. We are to carry on till we hear back from or go in for anti body test.

Good to hear about the hospital & great they are being extra vigilant.

Good luck for the new year and well done for the journey so far.

An hba1c of 32 is considered normal, I would be pushing for a second opinion as to whether she has t1 or not

Thank you Eats - happy new year to you too. Yes Trinity- I am worried that it takes 3 weeks for anti body test to come back. That’s if it’s been done at all! The nurses and doctors have been wonderful. But it is very stressful not having definite confirmation and doubt hanging over it. I don’t want to get me hopes up or be giving her medication she doesn’t need. I don’t know if insulin can change results of test either. Aghhh

How much insulin is she having?
32 is totally normal but could have been caught very early as a virus naturally stresses the body and so can speed up a diagnosis.
That said I don't think a one of blood sugar of 14 if everything else is normal is enough to be diagnostic. It's usually two readings over 11. I have heard of people having high random readings when ill / stressed and then nothing.
Hard to know if it's just extremely early or if it's misdiagnosed. Sleeping in one day wouldn't be a typical symptom. Weight loss, thirst, generally lethargic would...

Hi Waiting - she is having 1-20g novo rapid morning and lunch and always reads about 4.5 1-50g novo rapid tea and is 4.8-5 before bed so keeps having to have late snacks. 1 unit lantus overnight. Reading was 4.3 this morning, has been no higher than 4.8 all day despite few Xmas extras. I have no experience in this so don’t know if this is all normal.

Blimey. Those blood sugars are too low.

T1 since aged 1.5 here. Been on a pump for the last 15 years.

I can't grasp what is going on here. When are you next being seen by the hospital?

Thank oblo - the nurse has taken her off tea time insulin novo today and put on 1/2 of overnight- this nurse is very supportive and pushing for a review of diagnosis. She has lowered insulin for first two meals too. DC will have antibody test next as hadn’t been done. Aghhh Constantly having to feed her biscuits and bananas!

I'm not sure. I do know that small children if diagnosed early take tiny amounts of insulin. Like 1-2u a day. Sometimes only background insulin. So like 1 or 2u a day of lantus might be enough at the moment if she is indeed diabetic.
Was it just that one higher sugar? I'm surprised they gave insulin on that one sugar. I had sugars of 13/14/15 and still diet controlled only for five months when diagnosed aged 11. Then I took tablets for another two or three months (usually given to t2) which caused me mild hypos and then finally small doses of insulin. But definitely on diagnosis my blood sugars were in the low teens and I did not take any insulin for several more months although my carbs were restricted to less than 100g a day.

Lowering all the time Waiting so hopefully can stop feeding biscuits so much! I am grateful that they reacted quickly, if it is diabetes she will have been saved from awful symptoms or worse. I guess this way round we can check while making sure she doesn’t do any damage. If it’s a misdiagnosis then she’ll be ok in the long run and they look like they are reviewing it.

When she first went to the GP did he/she do a blood glucose test at the surgery? Or was it just at hospital? When it was up did they repeat or just give insulin and give diagnoses.

You mention keytones, my son has plus plus keytones when viral and has low blood sugars between 1.6 - 3.5 but can have rebound highs of 15 and at A&E we had a 15 recorded but they said as long as the high comes down it was not a concern.

Your nurse sounds completely on it though which is great. Are you having any highs after eating?

As far as I know they took blood for coeliac but not antibodies apparently. They didn’t do another pin prick but other test came back as 32. She had lantus only that night and woke up 4. Something. Next two days were a 3.9 till all insulin was lowered. She looks very pale at the moment and I have to sometimes wake her up in the morning. They are acting on it though - we are going back in and they are considering taking her off altogether while using Dexcom 5 and pinprick to monitor. They haven’t decided that yet but have brought it up as an idea. So hopefully we’ll get to the bottom of it.

That's not a bad idea. Take her off the insulin but give a cgm and then you'd see what sugars are doing on their own.
I am surprised at how much insulin was originally prescribed off that one sugar.

Sorry she had a blood sugar of 32?

Or is that the a1c?

Or both??

A blood sugar on its own of 32 would be indicative of t1 I would think.

I hope you get to the bottom of this soon, op. My dh has been T1 for 12 years; it's been a challenge and I think I'd be better at being diabetic than him - he doesn't test nearly often enough - but it's normal now and we don't stress about it. I hope you can find your own normal soon.

Thanks waiting 32 was the Hba1c they told me it was Normal. Tonight she didn’t have insulin (as advised by nurse) she had 40g carbs inc chocolate cake 1hr later she was reading 8. Then blood reading 2 hrs later 5.6 - what you think? I know it’s all speculation, just driving me a bit mad now! Thank you Kite - Love the story you’d be better with it hehe. I do wish it was me, she is so young.

{{http://www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html}}guide here should help}}

Hope the link works -

((www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html)) link

I wouldn't have expected it to go down without insulin, is she taking a 24hr long acting insulin as well as a fast acting?

She is on .5 lantus

It's very borderline. 8 is perhaps slightly higher than expected but not necessarily. It isn't out of the ballpark for non-diabetics.
5.6 would be normal.

Look at this study:www.ncbi.nlm.nih.gov/pmc/articles/PMC2892065/#!po=44.6429

In it is shows that non-diabetics routinely reach levels about that sacred cut off of 7.8 and spend an average of 6 hours a day above 6.1.

Even if she hit 8 at an hour her own insulin brought that back down quickly to range as you'd expect and on a tester you could easily test again and get a 7.5 as an 8. Their accuracy isn't 100%. I can test with the same drop of blood three times and get say a 5.7, 6.3, 6.5. It doesn't matter to me as it's essentially the same thing when you are a diabetic but it matters for diagnostic purposes.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2892065/#!po=44.6429

32 equates to an average blood sugar of 5.5

Normal.