My second cousin might be Type 1

[fiona35]

Hi All
I’m posting this message on behalf of my Aunt as the family are worried sick about my little 2nd cousin.
She’s 8 years old and in July got taken into hospital as she had sugar in her urine and blood sugars were high with Ketones. She was admitted for 4 days but the hospital say they don’t know what Diabetes she has because they’ve run tests and she is producing insulin but very slowly.
They won’t give her insulin at the moment whilst she is producing but in the meantime the poor thing is on a very strict diet, losing weight and if she strays off the diet, obviously her sugars rise into the twenty’s with ketones and she has to go to A&E but all they do is just monitor her for about 6 hours until her sugars come back down on their own. This now happens on a weekly basis.
She doesn’t have a consultant appt until end of Nov but the family have been trying to get it bought forward.
She has a dietician & a DSN, and they are treating her like a Type 1 except she doesn’t take any insulin at the moment.
Does anyone else know if this is typical of Type 1 diabetes, or should we be asking for different tests to be run, any idea what the hospital are thinking? We’re sort of in limbo until they say it’s this or that and give a definite answer.
Thank you

 

[Jaylee]

Hi,

It wasn’t typical for me.. I was diagnosed at the age of 8 in the month of July too..
It could be the “honeymoon” period for your niece, where the pancreas kicks out the occasional bit until it finally stops??

The treatment you describe seem extraordinary… Most odd.?

 

[Westley]

That does sound distressing, and I'm surprised that for an 8 year old with sugars going into the 20s they haven't prescribed insulin yet.

When I was diagnosed as a teenager, I went in to hospital, they measured my sky high blood sugar and ketones, told me I was T1, I was taught how to test and inject and sent home with insulin that same day (on a 2 injections a day mixed insulin, not full basal bolus). I don't think they waited for any other blood tests. I started feeling better almost immediately after starting treatment.

My understanding is that some low level of insulin production is normal at the time of T1 diagnosis and even for years after starting treatment, as the destruction of the beta cells can pass the point where the pancreas is able to produce sufficient insulin on it's own to keep glucose levels in check, without yet being total. They don't wait until natural function goes to zero before starting treatment, because sugars rise to harmful levels long before that.

I think there is some argument for trying to keep insulin doses low through diet particularly early on, to try and extend this honeymoon period as much as possible (since having even a little bit of your own insulin production makes managing spikes easier). Not for withholding insulin treatment entirely though if it is T1.

I think you're right to be concerned and to push for answers sooner.
I guess maybe they want to test for MODY, since then the treatment might not involve insulin injections, but finding out either way should be a matter of urgency so treatment can start and she'll feel better.

 

[EllieM]

I agree with @Jaylee that that treatment seems strange. Maybe some of the information has been lost or garbled in translation? I was diagnosed early aged 8 (T1 mum noticed I was thirsty) and never had a DKA, but was on insulin from the start.

If I were the parents I'd be worried about the possibility of DKA if her levels are going into the 20s with ketones. The consultant appointment sounds essential to me and I would definitely be pushing to have it as soon as possible. All I can wonder is whether they want to have more data on her levels before she sees a consultant???

 

[Jaylee]

I agree with @Jaylee that that treatment seems strange. Maybe some of the information has been lost or garbled in translation? I was diagnosed early aged 8 (T1 mum noticed I was thirsty) and never had a DKA, but was on insulin from the start.

If I were the parents I'd be worried about the possibility of DKA if her levels are going into the 20s with ketones. The consultant appointment sounds essential to me and I would definitely be pushing to have it as soon as possible. All I can wonder is whether they want to have more data on her levels before she sees a consultant???

In my case we were fobbed off by our GP at the time.
I was then rushed round a kiddy ward where my mum knew a nurse after a brief consultation in the foyer of the ward (from memory.) I was admitted, given a bed & put on a drip..

 

[fiona35]

Thank you all for your replies.
When I last spoke to my aunt they were going to consider going Private as they were up A&E again last night with blood sugars of 24 and ketones of 2.4 but after she’d been monitored for 6 hours, there were no ketones and blood sugar was back down to 5.4

 

[Jaylee]

Thank you all for your replies.
When I last spoke to my aunt they were going to consider going Private as they were up A&E again last night with blood sugars of 24 and ketones of 2.4 but after she’d been monitored for 6 hours, there were no ketones and blood sugar was back down to 5.4

Thanks for getting back.

Do you know what the “strict diet” is?
I’m curious..

 

[fiona35]

Her diet is sausage/bacon/eggs for breakfast, sliced cold meat/cheese/hard boiled eggs for lunch with chopped up crudités and dinner is meat/sausages with vegetables and sugar free jelly. She’s only allowed a very small portion of whole milk each day.
She doesn’t understand why she can’t have a sandwich or wrap at lunchtime and let’s not go there where crisps, biscuits and chocolate are concerned!
As an adult with diabetes you can understand the healthy diet but I do question it for an 8 year old who wants to eat what her friends are eating!

 

[Jaylee]

Her diet is sausage/bacon/eggs for breakfast, sliced cold meat/cheese/hard boiled eggs for lunch with chopped up crudités and dinner is meat/sausages with vegetables and sugar free jelly. She’s only allowed a very small portion of whole milk each day.
She doesn’t understand why she can’t have a sandwich or wrap at lunchtime and let’s not go there where crisps, biscuits and chocolate are concerned!
As an adult with diabetes you can understand the healthy diet but I do question it for an 8 year old who wants to eat what her friends are eating!

Yep, that does sound Keto..

Oddy I was diagnosed the day after my 8th birthday. I was drinking like a fish at this party it was a hot summer.
You can probably imagine the sort of things that were laid out on the table… instinctively I could only touch the cocktail sausage.
My appetite had been waining for a few days.


This does sound tough on your niece…

 

[Jaylee]

Forgot to ask.

Was your niece give any form of home BG monitoring?

 

[fiona35]

Yes, she uses a Libre 2 sensor and mostly with the new diet her sugars stay in the green zone but when she try’s to sneak something she shouldn’t eat, then it shoots up.
She doesn’t present as a typical type 1 as I’m drinking lots, being tired etc, they only took her to the GP because she was going for wees quite a bit and wanted to rule out a Urine Infection.
Of course when they tested the wee for sugar, they sent her off to the hospital.

 

[Deleted member 527103]

Does she have an alternative to the Libre for testing?
This is especially important given the numbers she is seeing because Libre is inaccurate when in double figures so a high may not be as high as she is seeing on the Libre and may be frightening your family more than necessary.

 

[Rokaab]

Does she have an alternative to the Libre for testing?
This is especially important given the numbers she is seeing because Libre is inaccurate when in double figures so a high may not be as high as she is seeing on the Libre and may be frightening your family more than necessary.

Or it could be higher earlier in which case more action is definitely needed by the docs/hospital!

 

[Jaylee]

I would agree regarding having a meter on hand as well with the errant numbers.
If I fly high on the sensor it can either match or can be 1 or 2mmol lower than the meter…

But that’s just me…

 

[fiona35]

I believe she does have a meter and also a separate meter for reading Ketones but they only check those once the Libre shows as really high.
I’ll mention to them that they should still use the meters and not rely solely on what the sensor is saying.
Thank you

 

[Rokaab]

She doesn’t understand why she can’t have a sandwich or wrap at lunchtime and let’s not go there where crisps, biscuits and chocolate are concerned!

I'm not surprised she doesnt understand.

Gotta be said as a T! adult I can have those things if I want (ok, they have to be gluten-free for me but that's not the T1).

I'm actually surprised that the docs/hospital seem to be dragging it out, multiple A&E visits for ketones +high blood sugars in a child needs to be dealt with and investigated and not just sent home - it will be causing distress to all those involved (and will be costing the local CCG a fortune as well)

 

[Deleted member 527103]

Your nieces results do not appear "normal" for Type 1 so I can understand why they are not just giving her insulin.
If her levels return to 5.4 without insulin, then she would hypo if she had some.

Understandably, A&E just needs to remove the emergency. If her levels are 5.4 when she is discharged, it is no longer an emergency.
It is not their job to diagnose and prescribe.

It must be very distressing for her and her family, I hope you manage to sort it out.

 

[ElenaP]

She doesn’t understand why she can’t have a sandwich or wrap at lunchtime and let’s not go there where crisps, biscuits and chocolate are concerned!

If and eight-year old does not understand the reasons, it could be that the DSN has not explained well enough. Her life would become more complex if the various hospital tests find that she has type 1 diabetes. Then she will be on insulin and counting carbohydrates, but still not allowed to eat everything that her non-diabetic friends eat.

Perhaps a parent with a child of a similar age can pick this up and describe how much their eight-year old type1 child understand?

 

[Jaylee]

If and eight-year old does not understand the reasons, it could be that the DSN has not explained well enough.

With the best will in the world.

Being singled out & getting some more “thou shalt nots” added to the existing 7 commandments at that age.
Even with the clever use of a “Janet & John has diabetes” book. One won’t be concerned about possible long term complications.

I appreciate why the kid wouldn’t understand.

To cap it off when I went back to school in September they had some “healthy eating bad food replacement initiative” going on?
(Carrot instead of candy.)
The stuff I carried in my pocket for “emergencies…” might as well have been a “wrap” of heroin.