Newly diagnosed 3 year old with diabetes type 1

[Brian mc]

Hi,

My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings.
Its been 3 hours and the readings are off by about 6ml.

Its scaring the life out of me as she's had hypos in her sleep about 3 times in the last week.
Just need to stay up and take finger blood glucose until this corrects itself.

If anyone has any tips or advice feel free to let me know. 3 weeks ago we knew nothing about diabetes but we are learning more every day. We just want our little one to be safe.

 

[Billy Barroo]

Hi,

My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings.
Its been 3 hours and the readings are off by about 6ml.

Its scaring the life out of me as she's had hypos in her sleep about 3 times in the last week.
Just need to stay up and take finger blood glucose until this corrects itself.

If anyone has any tips or advice feel free to let me know. 3 weeks ago we knew nothing about diabetes but we are learning more every day. We just want our little one to be safe.

Check out Paleomedicina, Zsofia Clemens and the Paleolithic Ketogenic Diet facebook group.

 

[Zhnyaka]

my cgm (I have libre, but I think the difference with dexcom is small) usually lies the whole first day, here I was advised to put cgm 48 hours before activation on the other hand, you can try to do it. With implausible indications, it is better to check her bg with a glucose meter, and at night give her some food, because if bg is a little higher than normal, it's not scary, but hypoglycemia is more dangerous.
Well, and you won't be able to keep her bg within the normal range all the time, this is a common thing, perfect control is almost impossible, but we are alive after decades of diabetes and everything will be fine with your daughter.

If she was diagnosed with diabetes just three weeks ago, why aren't you in the hospital? Have doctors taught you to count carbs and insulin dose?

I am sure that with such wonderful parents, your daughter is safe. Virtual hugs for you and your baby

 

[Brian mc]

my cgm (I have libre, but I think the difference with dexcom is small) usually lies the whole first day, here I was advised to put cgm 48 hours before activation on the other hand, you can try to do it. With implausible indications, it is better to check her bg with a glucose meter, and at night give her some food, because if bg is a little higher than normal, it's not scary, but hypoglycemia is more dangerous.
Well, and you won't be able to keep her bg within the normal range all the time, this is a common thing, perfect control is almost impossible, but we are alive after decades of diabetes and everything will be fine with your daughter.

If she was diagnosed with diabetes just three weeks ago, why aren't you in the hospital? Have doctors taught you to count carbs and insulin dose?

I am sure that with such wonderful parents, your daughter is safe. Virtual hugs for you and your baby

Hi, thanks so much for your message. Yeah we have been taught how to carb count and measure against ratios etc.

We have a diabetes team we have frequent contact with and they are making adjustments to her maintaining insulin as they said she may be in the 'honeymoon period' were her body creates insulin again but only for a short period of time.

We have adapted giving her some. More carbs before bed to prevent the night time hypos but tonight will be especially difficult as the newly attached dexcom 7 isn't giving true readings as yet.

Its literally been the most stressful times of our lives but seeing stories of people like yourselves gives us assurance things will get better and my little Grace will be fine.

 

[Brian mc]

Check out Paleomedicina, Zsofia Clemens and the Paleolithic Ketogenic Diet facebook group.

Hi, thanks for your message Billy. Are you saying there is evidence that type 1 diabetes is reversable? I have been told that is only true for type 2 diabetes.

 

[Billy Barroo]

Hi, thanks for your message Billy. Are you saying there is evidence that type 1 diabetes is reversable? I have been told that is only true for type 2 diabetes.

I've been in remission since the 26th July 2021. I haven't reversed it. If I went back to eating carbs again I would have to start injecting insulin again.

Brilliant scientific success! Type 1 diabetes has been overcome. There is only one question left: will Hungarian or French researchers take credit for this groundbreaking discovery?

Before we get started, here is a brief explanation of the title and of its practical implications. Click here, to read this article on our new website! THE CASE The diet which is radically different from the current recommendations of diabetologists can

www.paleomedicina.com

 

[Antje77]

Hi, thanks for your message Billy. Are you saying there is evidence that type 1 diabetes is reversable? I have been told that is only true for type 2 diabetes.

There is no evidence that T1 is reverersable, please focus on treatment for your daughter, not a cure. Would be wonderful if a cure came, but it's the day to day dealing with T1 we all need to do right no, no matter if there will be or won't be a cure in the future.

@Billy Barroo is 73 years old and has only been diagnosed for two or three years.
In adults, T1 tends to come up much slower than in young children (it's called LADA, a variety of T1), and the honeymoon period in those with LADA can last a long time, sometimes to the point of not needing insulin for a while.
This is not how T1 usually develops in young children.

In Billy's case this means he has gone full carnivore, eats only animal products. Not something I would want for a child if it were my child.
And there's the small point of Billy's diagnosis. He didn't reply on being asked if he tested positive for antibodies so I must assume he didn't have them tested.
It can happen people are diagnosed as T1's as adults but it was a mistake. There's still the possibility he doesn't have T1.

In young children, such a misdiagnosis is very, very rare, developing T2 is (almost?) impossible at 2 years old. There are some other, rarer types of diabetes but if your daughter presents as a normal T1, that's almost certainly what she is.

I'm sorry you've encountered this kind of misinformation on the forum.

 

[Zhnyaka]

Are you saying there is evidence that type 1 diabetes is reversable?

I almost died because my parents believed in something like that. Please be very careful with all the information that you do not know from doctors. Hope was in Pandora's box for a reason.

 

[Marie 2]

@Brian mc

If she is dropping at night, she is getting too much insulin. The problem becomes when anyone is newly diagnosed trying to figure out what doses she needs. And it could be her basal, which at night would be the most likely, or it could be the lingering effects of her last bolus. But honestly especially with kids it's just safer to be higher versus too low. Especially when you are trying to figure out her needed doses. I would contact her diabetic team and tell them she has dropped too low at night and you are having to give her a snack so they can make an immediate adjustment to the insulin she is getting. Keep on top of that until she is not consistently dropping to low.

Getting type 1 as a kid and stopping making all insulin usually happens pretty quick. But her needs might change at any given time. For example heavy exercise usually means you need less insulin for the day or even the next. These are things that are learned along the way.

I always calibrate my Dexcom. But I am picky and willing to do several finger pricks to do so. Some people they are wildly off, some not so much. And when you do calibrate it, it has an algorithm it follows, so it might need to be calibrated again. That first 24 hours is where it's most likely to be off.. Mine stays reading off unless I calibrate it. What we call soaking for 24 hours helps it to get used to you so when you start it, it won't be as off. But then she would be wearing 2 sensors and I'm not sure you want to do that yet. Finger pricking is a given being a type 1, before CGM's we had to do it all day, every day. A CGM at least saves our fingers quite a bit, just maybe not as much the first couple of days. Do check it's accuracy as needed. Life with a CGM, even if it's inaccurate is much better than not. You can at least tell whether she is trending down or up and have alarms which is a wonderful thing, especially where kids are concerned.

But do make the call for an adjustments to her insulin. Going low means too much insulin

 

[EllieM]

Its been 3 hours and the readings are off by about 6ml.

I'm a dexcom user and I do find it does sometimes read low for the first 12 hours (Hence I try not to start a new sensor at night).

Sometimes (very rarely_ you just get a bad sensor and have to replace it. (Hopefully by the time you read this the sensor will either be working or you'll have applied a new one.)

I was diagnosed at 8 before glucometers existed, let alone cgms, so the treatment for T1s has definitely improved over the last 50
years. And though being an astronaut was out of the question T1 hasn't stopped me from leading a happy and healthy life.

I've been promised a cure in 10 or 20 years for my whole life, and I've given up on it for me, but the treatment for young T1s continues to improve so it may be an option in the future. My recommendation for the present is to make the most of the technology now available and not panic when you don't get it right all the time. Keep in close contact with your team. There may well come a time where you understand your daughter's insulin needs better than they do but that is not yet.

Lots of virtual hugs to you and your daughter.

 

[Brian mc]

Thank you Ellie for the kind and reassuring words.

It turned out that the G7 was faulty. After 4 hours it completely failed. I called dexcom and they are replacing, I've got another attached this morning and it's working perfectly.

Have a great weekend and thanks again.
Brian.

 

[Francel]

Hi,

My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings.
Its been 3 hours and the readings are off by about 6ml.

Its scaring the life out of me as she's had hypos in her sleep about 3 times in the last week.
Just need to stay up and take finger blood glucose until this corrects itself.

If anyone has any tips or advice feel free to let me know. 3 weeks ago we knew nothing about diabetes but we are learning more every day. We just want our little one to be safe.

Hi after reading down your messages I can see that you had a faulty dexcom, which is what I was going to suggest (swapping it.)
To reassure you, I was diagnosed T1 at 3 years old and cannot remember before that so diabetes is just how I am ‍ I have lived a great life and after having diabetes for 53 years, having two children, drive a car, work and still have all my limbs, eyesight etc.
By the sounds of it you are brilliant parents as you’ve managed to learn carb counting, injecting and checking the blood glucose…it does become second nature and less stressful as you get used it!

 

[j.d.ice]

Hi,

My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings.
Its been 3 hours and the readings are off by about 6ml.

Its scaring the life out of me as she's had hypos in her sleep about 3 times in the last week.
Just need to stay up and take finger blood glucose until this corrects itself.

If anyone has any tips or advice feel free to let me know. 3 weeks ago we knew nothing about diabetes but we are learning more every day. We just want our little one to be safe.

Try a different sensor. Libre 2 suits me, my sister & brother. Although we're all now 50+ years being type 1, we all wish these sensors had been invented years ago! Good luck with your little one.

 

[Helendogs]

Hi,

My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings.
Its been 3 hours and the readings are off by about 6ml.

Its scaring the life out of me as she's had hypos in her sleep about 3 times in the last week.
Just need to stay up and take finger blood glucose until this corrects itself.

If anyone has any tips or advice feel free to let me know. 3 weeks ago we knew nothing about diabetes but we are learning more every day. We just want our little one to be safe.

Hi,

My 2 year old was diagnosed with type 1 (she's now 3). We have her on the new dexcom 7 which stops the finger pricking and the first 10 days we welcomed the constant readings. However she's had a replacement and it's giving off false low readings.
Its been 3 hours and the readings are off by about 6ml.

Its scaring the life out of me as she's had hypos in her sleep about 3 times in the last week.
Just need to stay up and take finger blood glucose until this corrects itself.

If anyone has any tips or advice feel free to let me know. 3 weeks ago we knew nothing about diabetes but we are learning more every day. We just want our little one to be safe.

Hi I was diagnosed as a very young child and had lots of problems and my parents were told repeatedly I wouldn't make several child ages, but am now in my late 50s.
I find Dexcom often needs calibrating for the 1st few hours, a low change often works quickly but a large difference usually requires several attempts. Mine doesn't seem able to cope with large changes, requests a recalibration & even when given it still can't cope and needs repeated attempts. I find correcting it by 2 mls every half hr (which calibrates it to midway spot) usually brings it in line after 4-6 hrs, if still not working ring Dexcom & get a replacement sent, using 1 of your stock for now. Keep at it, higher works better if worried, but try not to stay high too long. God bless.

 

[Brian mc]

Hi after reading down your messages I can see that you had a faulty dexcom, which is what I was going to suggest (swapping it.)
To reassure you, I was diagnosed T1 at 3 years old and cannot remember before that so diabetes is just how I am ‍ I have lived a great life and after having diabetes for 53 years, having two children, drive a car, work and still have all my limbs, eyesight etc.
By the sounds of it you are brilliant parents as you’ve managed to learn carb counting, injecting and checking the blood glucose…it does become second nature and less stressful as you get used it!

Thank you for the kind words Francel,

Your words are inspiring and reassuring, thank you so much.

We are doing a lot better the last few days, Grace has even attended nursery albeit with her mum by her side.

Life will slowly get back to normal. We'll the new normal.

Thanks again Francel, have a great day.


Brian