Frightened Newbies - Mummy and Daughter

[SB2015]

Great to hear that you have been able to get home, and you. Oath sound like troopers. Well done.
So much to take in, but we are all her to answer questions, offer advice and also for those moments when you just need people who do understand it all.

Keep in touch. It WILL get easier.

 

[trophywench]

Your daughter didn't look ill because she isn't ill! - not now she's getting insulin into her bloodstream she isn't so as long as she keeps getting it in there, she still won't be ill.

If her eyesight starts failing, she'll get some glasses and be able to see OK as long as she wears them - lose them and she'll be blind as a bat again. See what I mean?

A cure hasn't been found yet because it isn't a simple condition and each set of researchers only have funding for X amount of time to discover X things about the condition and there isn't a bottomless pit of money for any medical research - all researchers have pitch their idea to the money men, and if they think Alzheimer's or Rheumatoid Arthritis is a more worthwhile cause, then tough.

 

[stephknits]

Hi, so glad to here you had a lovely positive experience at home. It is ok for you to feel sad and angry - as an adult and a mother, you are able to see the bigger picture and look forward etc. Kids are much more able to live in the moment and make the most of it. Neither is wrong, it just is. That is why these forums are great. We have a chance to explore our emotions and express how we feel without guilt and with people who understand. @everydayupsanddowns is organising a zoom meet up - so you can 'meet' some of us if you want to join.

 

[everydayupsanddowns]

@everydayupsanddowns is organising a zoom meet up - so you can 'meet' some of us if you want to join.

There's a ‘Sticky’ thread at the top of the general board. Just pop your name there and I will make sure you get the invite 🙂

 

[Piglet]

Hi to you both
My parents felt the same way 40+ years ago. Type 1 has not been proved to be hereditary so do not punish yourself by saying was it something we did wrong. The positives things I would say is that it should not stop her from doing almost anything she want to in life (barring a very select few occupations) I have had a really full and different varied life, never fitting into any designated pigeon hole. Yes I have faced bullying and discrimination because of it and you learn to deal with it either by fighting back verbally or by educating those who are ignorant to make a better world for us all.

Your daughter should be proud to be different and unique and hold her head up high. I was always happy to talk about my condition using the thought process that the more others knew about it the safer it was for me.

Good luck

 

[SB2015]

Lovely to ‘see’ you today.

It is such a steep learning curve at the start, as well as dealing with all the emotions that go alongside a diagnosis at any age. This will become the new normal for you, and as others have said. It is manageable it just takes a bit of planning.

Keep the questions coming. No one minds at all.

 

[Kabbs]

Lovely to ‘see’ you today.

It is such a steep learning curve at the start, as well as dealing with all the emotions that go alongside a diagnosis at any age. This will become the new normal for you, and as others have said. It is manageable it just takes a bit of planning.

Keep the questions coming. No one minds at all.

Thank you so much, it was lovely to see you too.
It is indeed a very steep learning curve so thank you to all of you for answering my questions. I'm sure they were the same questions that everyone asks at the beginning and I bet you've answered them lots of times before but it really does help to reassure me that my daughter will be ok.
I had a call from the diabetes team today and we briefly discussed a clinical trial which my daughter might be able to get involved with. I will keep you posted. Kx

 

[SB2015]

How are things going now @Kabbs
I hope that things are beginning to get easier for you both.

 

[everydayupsanddowns]

How are things going now @Kabbs
I hope that things are beginning to get easier for you both.

Another Zoom meeting this weekend @Kabbs if you fancy it. Same details as last time 🙂

 

[Kabbs]

Another Zoom meeting this weekend @Kabbs if you fancy it. Same details as last time 🙂

Thank you for letting me know. I’ll be there.

 

[Kabbs]

How are things going now @Kabbs
I hope that things are beginning to get easier for you both.

Hi there. Thank you for your message. It’s starting to get easier yes, but my goodness there is so much to learn and every day is different, numbers wise.
My daughter’s BG has been up and down like a rollercoaster.
Last night at midnight, for no apparent reason it rocketed to 18, five hrs after she had last eaten.
We have the Dexcom now so I’m watching her numbers like a crazy hawk. Even so, we keep getting a ‘No Data’ reading (sometimes for hrs at a time eg the whole of Friday at school). We must be doing something wrong as I have heard such good reports about the Dexcom, about it being a real game changer. Fingers crossed we can get to grips with it.X

 

[Thebearcametoo]

Nothing will be perfect all the time and you may get the odd reading that is weird (double check with a finger prick if possible). If you get a lot of no data then let dexcom know as it might be a dodgy sensor.

 

[Kabbs]

Thanks. I will do.
Wonder if anyone could offer any advice re treating these weird nighttime highs Daisy is having. The last couple of nights she has gone as high as 18 ish after midnight.There are 0 or 0.1 ketones. The first night I was afraid to correct her with insulin as I was worried about her dropping too low, but last night I gave her half a unit, which brought her down to 15 ish, but not for a couple of hours and to BG of 12 ish by 9am. Should I give her a larger correction dose in the night and risk a hypo or jut stick to a small correction dose of half or one unit? I have been lying next to her awake every night watching her Dexcom numbers on my phone. She sleeps through everything but she was rather clammy last night. Is it better to be high than low? Even if it means being this high (18)?
Diabetes nurse said to treat hypers where it was food related but not if it’s nerves or Adrenalin related as Dais can go up and down again very quickly. And I can’t remember if I should treat a ketone free hyper? Sorry for so many questions in one. Am just in such a muddle with it all. X

 

[helli]

Hi @Kabbs
I’m a bit late to this thread and was a bit late to Type 1 (I was diagnosed in my 30s).
However, I just wanted to wish you and your daughter and pass on something my DSN told me on my first appointment: “diabetes shouldn’t stop you doing what you want.”
I have pushed this advice over the years with a lot of travel, a lot of exercise (often combining the two with things like trekking in the Himalayas, climbing in the Andes and cycling through the Middle East), a full social life and a sometimes stressful career.
When I feel Diabetes is getting in my way I think of Halle Berry who won an Oscar, Henry Slade who plays rugby for England, and even Theresa May who, although I may not agree with her politics, ran a country and they all have Type 1 diabetes. If they don’t let diabetes get in the way of their dreams, it shouldn’t stop me ... or your daughter.

 

[rebrascora]

Hi

So sorry you are on a roller coaster ride with it at the moment. Those hypos through the night may be caused by slow release carbs or carb rich foods combined with a high fat content, so things like pizza are notorious for delayed spikes and many people split their bolus to try to better match it, ie some bolus insulin before the meal and some after.
I would be inclined to treat a night time high of 18 with at least 1 whole unit depending on your correction factors, but as mentioned by @Thebearcametoo do make sure to do a finger prick check that the sensor is giving a reasonably accurate reading before taking any action, particularly through the night. If you are not confident to give more than half a unit correction during the night, then stick with that and fix the rest of the problem in the morning. Gradually you will gain the experience and confidence to know how much of a correction to use in these situations and it is far better to err on the side of caution than give her too much correction and send her hypo....and with the Dexcom, you have the ability to track her readings afterwards to ensure that her levels have reduced a bit rather than continued to climb.

 

[everydayupsanddowns]

Sorry to hear that the Diabetes Fairy is sticking her oar in and messing things up for Daisy - it’s what she loves to do unfortunately.

We can’t offer medical or dosing advice, obviously, but only suggest our ways of thinking in similar circumstances.

First of all - well done for being cautious. It’s all too easy to get all gung-ho with insulin and you can end up creating problems for yourself crashing from high to hypo. Plus ketones of only 0.1 are nothing to flap about, so while you obviously want to address the issue, you have some time to experiment and proceed carefully.

I currently have to be cautious with correction doses overnight too, as insulin seems to affect my BG twice as much as during the daytime.

But

If the same thing happened again, and the insulin acted in the same way, you are getting somewhere between 3mmol/L and 6mmol/L drop from half a unit.

Rapid insulin generally acts for 4-5 hours, so at 5am the correction would have been pretty much finished.

Say you are looking at 5mmol/L drop from 0.5u, you could reasonably expect a 10mmol/L drop from 1u.

So if BG were 18 again, and you corrected by 1u, you’d be expecting 8ish at 9am. Which still goves some ‘wiggle room’ but is closer to in-range.

If BG were only 14, 1u may take her down to nearer 4... which may make you opt for 0.5u until you have more experience.

Sometimes the Diabetes Maths works out like this... but other times it’s a bit more fickle. So proceed with caution, and you’ll get the hang of it with increased confidence in no time 🙂

 

[everydayupsanddowns]

Incidentally I’ve had some signal drop-outs with my phone too.

Including an irritating one where it says bluetooth is off (it isn’t).

Mostly it seems to fix itself within 5-10 minutes, but for the stubborn ones I find switching bluetooth off and back on again, and then quitting and restarting the Dexcom app often does the trick.

The TSlim pump doesn’t seem to have the same problems, so I am assuming it’s something to do with my iphone maybe having other bluetooth devices registered to it.

 

[trophywench]

@everydayupsanddowns - as Patti mentioned to me re Libre sometimes bearing very little resemblance to my BG - was I sure I was well hydrated?

Can that be a factor with a 'proper' CGMS ?

 

[everydayupsanddowns]

@everydayupsanddowns - as Patti mentioned to me re Libre sometimes bearing very little resemblance to my BG - was I sure I was well hydrated?

Can that be a factor with a 'proper' CGMS ?

I’m sure it would as both are reading interstitial fluid, and if you aren't hydrated I'd guess that the glucose would find it trickier to equalise between capillary blood and tissue fluid?

 

[SB2015]

Thanks. I will do.
Wonder if anyone could offer any advice re treating these weird nighttime highs Daisy is having. The last couple of nights she has gone as high as 18 ish after midnight.There are 0 or 0.1 ketones. The first night I was afraid to correct her with insulin as I was worried about her dropping too low, but last night I gave her half a unit, which brought her down to 15 ish, but not for a couple of hours and to BG of 12 ish by 9am. Should I give her a larger correction dose in the night and risk a hypo or jut stick to a small correction dose of half or one unit? I have been lying next to her awake every night watching her Dexcom numbers on my phone. She sleeps through everything but she was rather clammy last night. Is it better to be high than low? Even if it means being this high (18)?
Diabetes nurse said to treat hypers where it was food related but not if it’s nerves or Adrenalin related as Dais can go up and down again very quickly. And I can’t remember if I should treat a ketone free hyper? Sorry for so many questions in one. Am just in such a muddle with it all. X

Hi @Kabbs. Sorry to hear you and your daughter are having so many ups and downs. It sounds like you have already got your head round things, and thinking along logical lines. I hope that the advice you have will help. I know it is hard to be patient but this is a marathon not a sprint. Keep the questions coming. As Mike said ketones so low as 0.1 is nothing to panic about just confirming what you already know that she has been a bit high.

It will get easier and you will both become more confident with the decisions you make.