• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Newbie mother of a diabetic daughter

E

Edna Russell

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi there,

My daughter, almost 37 years old, was diagnosed T1 about two and a half years ago. Boy have a learned a lot. I hadn’t realised how dangerous diabetes is, and quite honestly, it terrifies me.
My daughter is going on to a pump around mid June, and I can’t wait. I’m hoping it’ll settle her down and she’ll have less nighttime lows, which she often sleeps through.
I share her dexcom app, so I get her alarms on my phone, and it scares me, every time.
My daughter is great at being on top of her condition and has done much research to try and look after herself as much as possible, she doesn’t take chances. But as her mum it frightens me.
 
Welcome @Edna Russell 🙂 Yes, diabetes can be scary in many ways. Nighttime hypos are always particularly worrying. I hope the pump helps. What Dexcom does she have? I have the G7 and Dexcom receiver and find that very hard to sleep through. It makes an awful racket and vibrates so much it kind of clatters on my bedside table. Worth a try if she’s still sleeping through alarms.

Does she fingerprick to confirm the nighttime lows? There are things called compression lows which usually happen at night and are due to pressure on the sensor from the body or clothing pulling on it.

Do you know what pump she’s getting?
 
Welcome to the forum @Edna Russell

It is understandable that you are concerned for your daughter and good to hear that she is on the ball with her management. Managing T1 is serious but the tech that we now have access to has made things a lot easier. Daily awareness and interventions are still required but these have the potential to improve our management. It sounds like your daughter has done her homework and is well prepared for her switch to a pump.

There is a wealth of experience to tap into on here, and there will be others using the same system whichever pump she is using. If you are happy to let us know which one she will using people who are familiar with the system can offer more help. I hope that as her use of the tech helps her, this will also allay your fears.

I know that for me the transfer to a pump helped me to get more sleep and to be more flexible as I was able to match my insulin delivery to what I needed hour by hour. With sensors available alongside pumps this also improves their effectiveness.

Let us know how your daughter gets on and know the forum is here for both of you.
 
Hi there @Edna Russell and welcome to the forum!
Thank you so much for sharing this, I can only imagine how hard it must be to carry that constant worry as a parent.
It’s completely natural to feel frightened - Type 1 diabetes can be unpredictable, especially in those early years post-diagnosis, and watching someone you love navigate the ups and downs (quite literally) can be incredibly tough. It’s so reassuring to hear that your daughter is proactive, well-informed, and managing things as best she can - and it sounds like she’s got a strong support system in you, which is incredibly important.
The move to a pump can be a really positive step - many people find it gives them more stability, especially around night-time lows. I hope it brings some peace of mind for both of you. And it's lovely that you’re connected through her Dexcom app, even though I know the alarms can be anxiety-inducing, it just shows how deeply you care.
Please know you’re not alone in feeling this way. So many parents and loved ones in the diabetes community share these same worries, and we’re here to support you too. You’re doing an amazing job just by being present, informed, and involved! And should you or your daughter ever have any questions - just fire them away down here, there's always someone who will have an answer. <3
 
Dear Edna, welcome to the Forum. Although I’ve been a Type 1 diabetic for a long time (62 years and counting!) I’ve only been a member of the Forum for a short time and have found it really useful. Through all the travails of living with Type 1 my wife has been the most important support and help. Long before the advent of CGM sensors etc she usually knew when I was having difficulties with low sugars. God bless her for saving my life many times!

I use the Dexcom G7 sensor mainly because I wanted to use an Apple Watch to keep track of my blood sugar levels and also so the alarms on my wrist both sound and vibration would wake me up. They certainly do that, even when I have had a bad low at night. To be recommended.

Nick
 
Thank you all, it helps to know that she’s going down the right road with a pump. Her lifestyle is never the same 2 days running as she and her husband run an event fire safety business, so one day she can be at home doing admin and the next day lugging 200 fire extinguishers around a site.
She will be getting the Tandem TSlim and with a dexcom apparently they haven’t integrated with Libre yet.
She’s just had her letter confirming the date, so it’s 41 days and counting.
 
Hope your daughter gets on well with the tSlim

It’s a very flexible system, and pairing it with a Dexcom sensor allows the pump to adjust insulin to prevent the worst highs and lows.

In general I found the algorithm pretty cautious, and it suspended insulin fairly close to hypo-territory, so I ended up with an alarm in the 5s so that I could be aware if things were dropping and take action before the algorithm stepped in.

The nighttime mode was amazing though! I just got used to waking in the 5s / 6s every morning.

One of the powerful things about the tSlim, is that the algorithm uses a profile you define to make its decisions, and on which is bases its adjustments. That would mean with your daughter’s varied routine she wouldn’t have to wait for the pump to ‘catch up’. She could have 3 or 4 basic profiles - eg one for admin days, one for event days, and one for weekends, and switch between them to have less insulin (and different meal ratios/correction factors) on her more active days.
 
Hi @Edna Russell
It is lovely that you are so proactive and supportive with your daughter.
The responses above focus on the transition to a pump which I found fantastic although at first, it feel like you have to retrain part of your diabetes brain to let the pump do its thing.
You mention the other technology we use - her Dexcom CGM. Again, another great piece of kit as you are seeing. However, it does have limitations. One of these, @Inka touched upon when she mentioned "compression lows". I wonder if this is what you are seeing with regards to her hypos at night. They can often be identified when you look at a graph even when you are not with her to see if she does finer pricks.
Usually, when we go hypo, our BG falls and stays low until they are treated.
With a compression low, they appear to happen very suddenly and recovery is quick: the graph drops and then returns to close to the original level. The drop is when we turn over on to our arm with the sensor and pressure is applied. The quick return happens when we turn over again and the pressure is removed (so the interstitial fluid can get to the filament which is doing the measurements).
As someone who does wake when my alarm goes off, these are really annoying but, over time, I have found a suitable placement for my sensors which I don't lie on. For me, this is quite high up my arm and quite far round the back. Not quite in my arm pit or on my shoulder but close. Unless I do a shoulder stand while asleep (I can't do them when I am awake so that is unlikely), my sensor is safe from pressure as I toss and turn at night.
 
everydayupsanddowns said:
Hope your daughter gets on well with the tSlim

It’s a very flexible system, and pairing it with a Dexcom sensor allows the pump to adjust insulin to prevent the worst highs and lows.

In general I found the algorithm pretty cautious, and it suspended insulin fairly close to hypo-territory, so I ended up with an alarm in the 5s so that I could be aware if things were dropping and take action before the algorithm stepped in.

The nighttime mode was amazing though! I just got used to waking in the 5s / 6s every morning.

One of the powerful things about the tSlim, is that the algorithm uses a profile you define to make its decisions, and on which is bases its adjustments. That would mean with your daughter’s varied routine she wouldn’t have to wait for the pump to ‘catch up’. She could have 3 or 4 basic profiles - eg one for admin days, one for event days, and one for weekends, and switch between them to have less insulin (and different meal ratios/correction factors) on her more active days.
Click to expand...
That’s good to know, thank you. I’ll pass all that on, so she has as much info as possible before she gets going with it..
 
You must log in or register to reply here.
Back
Top