Increased insulin production for a whole year for almost half the kids: that is actually a very good result.
If more studies show this, it could become a standard treatment for newly diagnosed kids (or LADAs, or that matter, if they react the same way).
What are the benefits to extending or strengthening the “honey moon” period? Our medical advisors said it would last up to a year, but that ultimately it wouldn’t matter since insulin would always be required.
This is a lot to learn, and I am learning every day.
Welcome to our community @RockReady, the benefits are a better understanding of the immune system and the hope is that some of this work will unlock a key that will either allow for a therapy that stops the auto-immune attack, or find a therapy that could halt the disease progress for a long time allowing people who are diagnosed to not need added insulin for as long as possible.
Thanks for the warm welcome.
Is there a benefit of using less insulin? Medical staff strongly emphasized to not change diet or exercise patterns. Makes sense to me, coming from DKA. But long term, it may be medically beneficial to use less insulin? I am not sure.
Ultimately we want to monitor our childs food and exercise habits as much as possible, and see what feels the best. Wearable standalone like the SW3 + CGM sensor we would like to experiment with. Medical staff advise learning solely with basic methods for awhile at first, which we agree with as well, but are curious and want to toy around with new tech.
I see a lot of posters vary and it’s helpful to see what works for other people. What I have quickly realized is that this is a self managed condition. I found this site randomly myself and really respect the energy and experience.
Other than giving someone more time to learn with smaller amounts of insulin, I don’t think so. The payoff is likely longer out in the future.
Truer words have never been spoken. We have created a small but dedicated community that wants to really get the word out about tactics and approaches that people are successfully using. Glad you found us.
Hi and welcome!
I was diagnosed DKA as an older adult and tests showed my c-peptide was extremely LOW and that I was producing almost no insulin. So I went on insulin right away and had to learn how to do injections right out of the gate. 
Since you child was DKA (which is so scary, I know), I was wondering whether s/he is still producing enough insulin to avoid DKA again?
While the body is still making some insulin the body will try to counteract rising BG. After insulin production ceases, it is entirely up to interventions by the diabetic and their medical devices.
Good question and I don’t know. Felt rushed in and out of the hospital, 2 days with some basic education classes. We didn’t get much sleep either. What would be well informed questions to ask about blood work? A1c level? C peptides? Can they do pancreas beta cell counts? We went straight on insulin as well, everything manually done. Basically prick 5-7 times a day and dose insulin as needed. Haven’t had any lows yet, mainly trying to keep it under 240, and testing for ketones if higher. There is a short 3 hour insulin and a long 24 hour insulin once a day. Basal/bosul I believe.
Speaking of sleep, would getting a CGM from Canada be advised? Doctors/nurses said to get used to the basics then we could get better tech in a few months. Obviously the needle pricks are good to do and check a CGM, but getting up in the middle of the night has been bad for everyone.
I wouldn’t mind paying the 1k or so out of pocket in Canada for just a few months. I am a bit reluctant to go against doctors orders in general, but I’ve been reading non stop about the condition the past several days and t1d experienced people seem to ultimately do everything themselves.
I understand learning to use basic medical equipment is necessary, but there seems to be no good reason to be without a CGM.
I completely understand the need to learn MDI before pumping, because when a pump fails, you need to switch to MDI. But I am with you, there is no reason at all to be without a CGM. My son still uses plenty of strips in combination with his CGM. So nothing is lost there.
We are fine dosing with a syringe while learning about insulin. Not interested in a insulin injection automated pump for now. Would like to just start with a continuous monitor for reading.
Maybe the dexcom is overkill then, and we can just find a libre. Libres appear cheaper and more abundant as well, maybe able to find a local t1d/t2 for help with obtaining one instead of driving over the boarder during a pandemic, or dealing with shady online pharmacies.
We are not used to dealing with doctors. They don’t seem to enjoy being questioned or creating specific treatment plans tailored for each individual. None of us have had a serious condition before, or visited a doctor often, much less as hospital. Even the birth was done in water, with professional assistance, not in a traditional hospital. Child just received basic vaccinations for school and yearly physicals measurements, and teeth cleaning. I regret not doing yearly or semi annual full lab work which may have caught a1c levels… What all would you advise for preventative care? (Other than bc/insulin control).
Coming from DKA we were desperate, uninformed, and in no position to question any medical advice. Thanks catlady for mentioning c-peptide. Nurses mentioned often there would be a honeymoon period, anywhere from a few weeks up to 1 year. We will call and ask about those levels. At the time we were just told to worry about drinking water for ketones and BC levels and insulin units given and carbs eaten. Ultimately I don’t know what the benefit of using less insulin would be, other than saving money. I would assume there are health benefits for a diet with low or medium carb intake, which would result in less insulin usage. Medical staff strongly advised us to not concern ourselves with diet for now. Which again, I would agree with having just survived DKA, but long term, I would assume using less insulin might be a good thing. Have to read a lot more.
Anyway, I know this forum and everywhere else online would never offer medical advice. I just want to know what others experiences have been and what has worked for them. I feel doctors are invaluable and always mean well, but may be hampered by time/administrative restrictions and insurance coverages of patients. As such they can’t possibly completely monitor and fully analyze every diabetic and create the best personalized care plans.
They definitely can’t without CGM sensor data, so I feel the need for us to do it ourselves. Which circles back to my original statement, is it possible to respectfully pressure or request a CGM from a doctor? Or do people just change doctors if they don’t like what they hear? Our team of doctors and nurses are very well regarded, and saved our child. It’s tough to push back against anything they say, or question how they came to a particular conclusion. How does everyone here interact with a doctor when you disagree with something? Also, what are good questions to ask and tests to be done? To my knowledge they just did antibodies (maybe the wrong term I am using) for t1d, celiac, and 1 other digestive or endocrine auto immune condition which I can’t recall exactly.
6 posts were split to a new topic: Why aren’t there more studies and trials?
That’s what I did! I needed 2 weeks of BG data to demonstrate need for the device: a spreadshhet works great for this!
I’d also like to recommend the book Think Like a Pancreas (3rd edition) by Gary Scheiner, who himself is T1D and is also a diabetes educator. This book really helped me get a grip on what I needed to know to get my life back again.
A third edition has been published earlier this year. (I haven’t purchased it myself yet)
Yes, we do it regularly. In fact our medical team now listens to my son and us because we have backed up our requests with valid reasons. But it is hard in the beginning. I would not want to be without a CGM for the first few months of learning if at all possible. And while the Libre is nice, the Dexcom’s alarms will give you great peace of mind. If you are forced to use the Libre, please look into the devices that automatically output the data to a phone.
Thanks for the book recommendation. Will look at on Amazon later tonight while looking for alcohol swabs. Everything else we should be good on for a while.
Luckily we procured a libre sensor from a local friendly type 2 diabetic. Installed painlessly without complaint. Waiting for the 1 hour to kick in and finish setup. My understanding is we can’t buy any CGM without an rx. Spoke with our medical team via their app late today and was told they would request one but it may take 1 month. I myself don’t know the exact details off the top of my head, dear Mom relayed that to me.
Canada isn’t too far of a drive for us, so if the CGM is as useful as we hope I can pick up some sensors there I’d imagine, in the meantime. Child is good about checking BG manually so we may be able to get away with a libre sensor instead of dexcom for a month or so. I am somewhat technically inclined, and will look into whether or not the sony smart watch 3 will work with a libre 14 day, but I recall some issues about there being no open source apps that are compatible with it. Child is too young for unfettered smart phone access. Hence a wifi enabled wearable with NFC would be ideal. Child can scan throughout the day, with say a smart watch, and we could see data remotely. We’ve been told school nurses are equiped to handle t1d with a proper 504 plan, but that’s all a few weeks down the road to fret over.
Off to pour through the App forum section to try and figure out how to best optimize the CGM for our needs
Is the “medical team” approach most common? I’d imagine it’s paramount for cost effective diabetes education and perpetual management. Getting the ear of an endocrinologist is hard. The team we are with is highly ranked for this condition, and we barely know anything, so changing makes no sense. I just don’t know why receiving a cgm immediately is an issue. Are insurers that hesitant and require more documentation? And/or is it a strongly imbedded common practice to force manual BC checks onto new patients in order to familiarize themselves with the basics?
Agree that if you have access to great diabetes educators, that the endo is important, but not critical. Our commercial insurance endo was really great, and her team was amazing!! Can’t say enough about the classes, support, and phone calls they took to help us. Most of the diabetes educator team was either a Type 1 themselves or had a Type 1 child. They gave us a prescription for a CGM as soon as we asked. It was only the pump that they made us wait for 6 months, which was a good thing in my opinion. But CGM is critical. It helps you learn.
Same with us, Chris. Our company insurance Endo poc has been a great resource for us.