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My youngest daughter has been on a pump for six years now and she's completely burned out and apathetic about it all. It just all blurs together and her diabet

by jcims 3y ago

My youngest daughter has been on a pump for six years now and she's completely burned out and apathetic about it all. It just all blurs together and her diabetes is not well managed at the moment. My oldest and I had a sort of impromptu intervention with her and she just broke down crying. It's a lot. The pump she has, a t:slim X2 is better than her Medtronic, but the closed loop aspect (control iq) is impotent and rarely has a noticeable impact. Hopefully this tech will advance on a good pace and products will hit the market with more assertive control algorithms. Obviously there are dangers but we've already accepted that by hooking her up to a pump with enough insulin in it to kill her.

mecsred 3y ago
I have family with diabetes and I feel some empathy with your situation. I've felt that second hand anxiety when my cousin started partying recklessly in uni and not managing it super well. You're helping her manage it and that makes a massive difference. Those of us without diabetes usually aren't taking care of ourselves at 100% either. We're lucky to have access to amazing medical technology, so some scary seeming situations are pretty recoverable. Hopefully a platitude or two helps a small amount :(
photon_lines 3y ago
Have you tried putting your daughter on a different diet (low glycemic-index diet with more natural and keto-friendly foods)? This will make managing her diabetes a lot simpler and it'll make her feel better too. I'm a type one diabetic and have been one for over 15 years now. Getting diagnosed is one of the best things that's ever happened to me. It got me to notice the huge impact diet and exercise have on the mind and body. I initially had issues like your daughter too but changing my eating habits and altering my life-style definitely had a profound effect and made it much easier to manage. If you need tips / help let me know and I'll do what I can. My number one tip is to stick to a more keto-based diet. It will make her blood sugar much easier to manage and has a lot of health benefits.
- milesvp 3y ago
  Second this. Just adding fats and protien to a meal effect the meal’s glycemic index (even though it does nothing to glycemic load). I did a lot of research both times my wife was gestational diebetic, and while I already knew that fats helped to smooth bloodsugar levels, it was still wierd to see a dataset with toast having one of the highest glycemic while buttered toast was significantly lower on the scale.
  - phil21 3y ago
    This is trying to solve the wrong problem. Juvenile diabetes is almost always a human problem - not one of optimizing for treatment. If you have a kid in their teens or 20's who is not entirely ignoring it out of spite, you're way ahead of the game. This problem is much harder to solve than tracking carbs and insulin doses, or changing diet/etc. The person has to be ready to attack it. And for many young folks (and I assume older as well) this is where the problem lies. It takes a lot to really accept this is going to be your entire life, especially at an age where everyone (seemingly) around you are living these amazing care-free young adult lives, while you have this constant monkey on your back being a buzzkill. Very few individuals have the desire to "do their research" and start hacking on their health the way the HN community would tend to approach things. Short of commenting on how heartbreaking it is as a parent to watch your kid go through this, I really have no good answers. I guess the topic of this discussion is it - a magic device you can slap on once a week and never think about again. Short of a device like that, I can't see this problem turning to technical vs. human any time soon.
    - jcims 3y ago
      You nailed it. If you think of our brains as a complex electrochemical reaction, the concept of activation energy is in play. And I just think that for some people in some situations their mind doesn’t have the wiring to generate sufficient potential gradient to achieve the activation energy required to motivate action. They can’t just will a thing, they need to rewire their brain first. Fortunately this is possible, but not easy.
- 3y ago
heuermh 3y ago
Hang in there, lots of folks having similar experience! We have been pretty impressed with the closed-ish loop of the Dexcom and Omnipod, it handles daily fluctuations due to more/less exercise etc. fairly well. Still two separate handheld devices though, and quality always falls off when the sensor (every 10ish days) and pump (every 3 days) approach expiration.
- cadr 3y ago
  I love my omnipod/dexcom combo so much.
GiorgioG 3y ago
My 11/yo has the same pump. Control IQ is great...but it takes a cautious approach to adjustments of insulin delivery given that it can only lower blood glucose levels and not raise them. Hopefully dual-hormone pumps will come out in the next few years and the algorithms can be more aggressive. In the end, our 11 year old ignores his pump much of the time. We have a bunch of SugarPixels around the house, so if his sugar is way off we know and can address it ASAP.
jacquesm 3y ago
Due to NDAs I can't write too much about this but there is a lot of work being done on this front right now and I expect a new generation of these devices to be out for trial in the relatively near future. Pumps are getting smaller, which is one factor that helps and analysis is getting more accurate. Reliability and sensors are improving. But the timing aspect is critical especially without knowledge about environmental factors and the relatively long hysteresis of the feedback is a major obstacle to the big leap forward. Key here is that the body has more data about the situation than an outside device will ever have and that regulation in the body is a fairly global affair [1] so it can act faster and with more precision than you can ever do from a single site. These are all super tricky problems. But compared to the situation only a decade ago it is already much better and I fully expect at least one more round of breakthrough devices. Best of luck there, it's harsh to be a kid with such a demon on your shoulders. [1] for instance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/
- jcims 3y ago
  That's amazing to hear. Thank you!
epilys 3y ago
I'm on the Medtronic 780g hybrid loop and it's actually working. If I eat nothing and have no intense physical activity the CGM curve is a stable straight line.
- jcims 3y ago
  That's the one she had. It's been a few years, maybe they have fixed it.
  - jacquesm 3y ago
    It has indeed been improved substantially in the last couple of years. If you haven't upgraded the pump in that time I would definitely recommend you do so. One thing about these pumps that doesn't seem to be advertised widely enough: they don't handle full sun well, so always keep at least one layer of clothing over the pump.
sgt101 3y ago
My daughter is on https://camdiab.com/ https://camdiab.com/ it really works a charm, we do have alarms for low glucose (like it can dip down to 3.1 if she does exercise) and rarely for high glucose, but these are things you would probably not even see without the constant monitoring. The data shows that she is extremely well managed since she started with the closed loop system. Camaps demands that you have a particular model of phone (about a dozen androids and iphones) which makes it a bit more expensive I guess. Luckily we are on the NHS in the uk so my only expense as a parent is that I have to buy the posh phone, but then I guess that goes with having a teenager around anyway...
- jcims 3y ago
  Nice!!! Do you mind if I ask which pump you’re using? We’re already using the G6 cgm which she seems to like.
  - sgt101 3y ago
    G6-cgm and Dana Diabecare-rs. We started with the Dana-i but it was glitchy and so we got the rs instead, which works a charm so far. We also use a setter device that talks to the Dana pump when you are filling it up and tells it how much insulin you are loading (this can be done manually also I think). She has a samsung s-20 phone, previously we had a pixel 3 which bricked itself on Christmas Eve. I had a LG G7 which we tried to use, but although this is claimed to be compatible it turned out not to work. So we had injections over Christmas which was not great, but when the new phone turned up on 27th all was well again. Google replaced the Pixel, so I now have the replacement handset and it is ready to go as a fail over.
mlsu 3y ago
Gosh your post really hit a nerve. I went through the same struggle with my own Type 1. Feeling overwhelmed with responsibility, denying I am any different than anyone else, denying that I have to permanently manage a condition to be normal, denying that my own body would fail me, feeling helpless that even the "best" I could do would still involve invasive and frustrating treatments. For me, it was a phase. Happened at about the same age (through my teens, basically) and took about that amount of time to just get through it. At some point I learned that with a bit of management, I can thrive and do just as well as anyone, especially with the new tools that we have now. It just took that psychological struggle to get there. I am really sorry that you have to see your daughter struggling like that. I know exactly how helpless it feels.
- jcims 3y ago
  Thank you, I really needed to hear this.

by jcims 3y ago

mecsred 3y ago

I have family with diabetes and I feel some empathy with your situation. I've felt that second hand anxiety when my cousin started partying recklessly in uni and not managing it super well. You're helping her manage it and that makes a massive difference. Those of us without diabetes usually aren't taking care of ourselves at 100% either. We're lucky to have access to amazing medical technology, so some scary seeming situations are pretty recoverable. Hopefully a platitude or two helps a small amount :(

photon_lines 3y ago

Have you tried putting your daughter on a different diet (low glycemic-index diet with more natural and keto-friendly foods)? This will make managing her diabetes a lot simpler and it'll make her feel better too. I'm a type one diabetic and have been one for over 15 years now. Getting diagnosed is one of the best things that's ever happened to me. It got me to notice the huge impact diet and exercise have on the mind and body. I initially had issues like your daughter too but changing my eating habits and altering my life-style definitely had a profound effect and made it much easier to manage. If you need tips / help let me know and I'll do what I can. My number one tip is to stick to a more keto-based diet. It will make her blood sugar much easier to manage and has a lot of health benefits.

milesvp 3y ago
Second this. Just adding fats and protien to a meal effect the meal’s glycemic index (even though it does nothing to glycemic load). I did a lot of research both times my wife was gestational diebetic, and while I already knew that fats helped to smooth bloodsugar levels, it was still wierd to see a dataset with toast having one of the highest glycemic while buttered toast was significantly lower on the scale.
- phil21 3y ago
  This is trying to solve the wrong problem. Juvenile diabetes is almost always a human problem - not one of optimizing for treatment. If you have a kid in their teens or 20's who is not entirely ignoring it out of spite, you're way ahead of the game. This problem is much harder to solve than tracking carbs and insulin doses, or changing diet/etc. The person has to be ready to attack it. And for many young folks (and I assume older as well) this is where the problem lies. It takes a lot to really accept this is going to be your entire life, especially at an age where everyone (seemingly) around you are living these amazing care-free young adult lives, while you have this constant monkey on your back being a buzzkill. Very few individuals have the desire to "do their research" and start hacking on their health the way the HN community would tend to approach things. Short of commenting on how heartbreaking it is as a parent to watch your kid go through this, I really have no good answers. I guess the topic of this discussion is it - a magic device you can slap on once a week and never think about again. Short of a device like that, I can't see this problem turning to technical vs. human any time soon.
  - jcims 3y ago
    You nailed it. If you think of our brains as a complex electrochemical reaction, the concept of activation energy is in play. And I just think that for some people in some situations their mind doesn’t have the wiring to generate sufficient potential gradient to achieve the activation energy required to motivate action. They can’t just will a thing, they need to rewire their brain first. Fortunately this is possible, but not easy.
3y ago

heuermh 3y ago

Hang in there, lots of folks having similar experience! We have been pretty impressed with the closed-ish loop of the Dexcom and Omnipod, it handles daily fluctuations due to more/less exercise etc. fairly well. Still two separate handheld devices though, and quality always falls off when the sensor (every 10ish days) and pump (every 3 days) approach expiration.

cadr 3y ago
I love my omnipod/dexcom combo so much.

GiorgioG 3y ago

My 11/yo has the same pump. Control IQ is great...but it takes a cautious approach to adjustments of insulin delivery given that it can only lower blood glucose levels and not raise them. Hopefully dual-hormone pumps will come out in the next few years and the algorithms can be more aggressive. In the end, our 11 year old ignores his pump much of the time. We have a bunch of SugarPixels around the house, so if his sugar is way off we know and can address it ASAP.

jacquesm 3y ago

Due to NDAs I can't write too much about this but there is a lot of work being done on this front right now and I expect a new generation of these devices to be out for trial in the relatively near future. Pumps are getting smaller, which is one factor that helps and analysis is getting more accurate. Reliability and sensors are improving. But the timing aspect is critical especially without knowledge about environmental factors and the relatively long hysteresis of the feedback is a major obstacle to the big leap forward. Key here is that the body has more data about the situation than an outside device will ever have and that regulation in the body is a fairly global affair [1] so it can act faster and with more precision than you can ever do from a single site. These are all super tricky problems. But compared to the situation only a decade ago it is already much better and I fully expect at least one more round of breakthrough devices. Best of luck there, it's harsh to be a kid with such a demon on your shoulders. [1] for instance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4214828/

jcims 3y ago
That's amazing to hear. Thank you!

epilys 3y ago

I'm on the Medtronic 780g hybrid loop and it's actually working. If I eat nothing and have no intense physical activity the CGM curve is a stable straight line.

jcims 3y ago
That's the one she had. It's been a few years, maybe they have fixed it.
- jacquesm 3y ago
  It has indeed been improved substantially in the last couple of years. If you haven't upgraded the pump in that time I would definitely recommend you do so. One thing about these pumps that doesn't seem to be advertised widely enough: they don't handle full sun well, so always keep at least one layer of clothing over the pump.

sgt101 3y ago

My daughter is on https://camdiab.com/ https://camdiab.com/ it really works a charm, we do have alarms for low glucose (like it can dip down to 3.1 if she does exercise) and rarely for high glucose, but these are things you would probably not even see without the constant monitoring. The data shows that she is extremely well managed since she started with the closed loop system. Camaps demands that you have a particular model of phone (about a dozen androids and iphones) which makes it a bit more expensive I guess. Luckily we are on the NHS in the uk so my only expense as a parent is that I have to buy the posh phone, but then I guess that goes with having a teenager around anyway...

jcims 3y ago
Nice!!! Do you mind if I ask which pump you’re using? We’re already using the G6 cgm which she seems to like.
- sgt101 3y ago
  G6-cgm and Dana Diabecare-rs. We started with the Dana-i but it was glitchy and so we got the rs instead, which works a charm so far. We also use a setter device that talks to the Dana pump when you are filling it up and tells it how much insulin you are loading (this can be done manually also I think). She has a samsung s-20 phone, previously we had a pixel 3 which bricked itself on Christmas Eve. I had a LG G7 which we tried to use, but although this is claimed to be compatible it turned out not to work. So we had injections over Christmas which was not great, but when the new phone turned up on 27th all was well again. Google replaced the Pixel, so I now have the replacement handset and it is ready to go as a fail over.

mlsu 3y ago

Gosh your post really hit a nerve. I went through the same struggle with my own Type 1. Feeling overwhelmed with responsibility, denying I am any different than anyone else, denying that I have to permanently manage a condition to be normal, denying that my own body would fail me, feeling helpless that even the "best" I could do would still involve invasive and frustrating treatments. For me, it was a phase. Happened at about the same age (through my teens, basically) and took about that amount of time to just get through it. At some point I learned that with a bit of management, I can thrive and do just as well as anyone, especially with the new tools that we have now. It just took that psychological struggle to get there. I am really sorry that you have to see your daughter struggling like that. I know exactly how helpless it feels.

jcims 3y ago
Thank you, I really needed to hear this.