Dear All, I am father of 10 years old son who is recently diagnosed with T1D. I started following this forum in last couple of days and insights from all of you are very helpful. I am sure all of you wish to see permanent root cause solution for T1D one day and I am sure you all must have discussed this with your endo. Have you come across any positive response? I am still hopeful somewhere in my heart that there will be permanent solution to this in his life time.
Hello @abhijitekre Abhijit, welcome to Type One Nation. There is no cure for Type 1 diabetes. We all have to take insulin for the rest of our lives. There are a couple of clinical studies, right now, with Vitamin D and with an old vaccine, both of which are showing information but there is nothing conclusive and nothing is changing in the foreseeable future. You must work hard to wrap your head around the fact that your beloved son will have to deal with this and there isn’t anything you can do to change it.
That being said, You can always raise awareness as you are not completely powerless. You can support local government and make positive changes in schools regarding accommodations for Type 1 diabetes. You can study type 1 diabetes and learn how to use insulin to control blood sugar. You can seek out help and advocates for both yourself and your son.
One of the things I do is design research facilities for the pharmaceutical industry. The current state of the art is biological research in immunotherapy. There are truly awesome things coming to this world. In my opinion, Immunotherapy holds the key to a true and total cure for Type 1 diabetes but beware of this trap, the hope that a cure is coming tomorrow will only bring disappointment and despair. Live your lives as if there is no cure coming… ever. I am 41 years treating my diabetes successfully and know in my heart to continue the effort with all of my strength - but to also expect nothing from the future.
I hope you and your son have support and again, welcome to the forum.
Nowhere near a cure that I know of, but technology is making great strides that improve Time In Range, A1C, and overall quality of life. If your son is not using a CGMS with an interoperable pump, such as the Tandem t:slim X2 and Dexcom G6, I would encourage you to look into it. There are even better DIY solutions. I use Loop, LoopDocs. There are several Facebook groups that might be useful, including Looped, CGM in the Cloud, CGM in the Cloud Off Topic, DiaTribe, and platform-specific groups such as Tandem T-Slim X2 Users. The tools we have, and those in the queue for launch in 2020-2021 should help your son live a long and healthy life.
Thanks for your response. I am realistic but want to be optimistic with hope in my heart. It’ll keep me going. It’s great to know that you are associated with Research facilities with pharma industry. Atleast you get to know real updates than marketed updates. Your story is giving me hope that my son will be able to live a normal life with support from me, my wife and many friends like you who are providing great hope. I am definitely going to do my bit for T1D awareness. My son’s health situation has given a new purpose for my life.
Thanks Mike. My son got diagnosed with T1D accidentally while we were on christmas vacations in India. I am going to meet endo in Charlotte, US in Feb once i return back to US. I’ll discuss all technological options with him. I have already started exploring Insulin pumps, CGMs from various providers. Thanks for all your inputs.
Myself and My wife had decided to take this as just another challenge and do everything possible to give him a normal and healthy life.
If you have time before your son’s endo appointment, familiarize yourself with the DIY methods, because many endocrinologists are not familiar with them. If you and/or your wife are technology workers, you would probably be OK with the technology and diabetes
management tasks required by a DIY solution. In my opinion, Loop is the most commercial-like DIY method, and it works with certain current Omnipod insulin pumps, as well as with certain old, hackable Medtronic insulin pumps. If you think you might be interested
study the beginning sections of LoopDocs, https://loopkit.github.io/loopdocs/.
Thanks Mike. Since I am new to this, I am planning to follow the advice given by my endo including insulin pump prescription etc. Once i start understanding this in detail, may be I can explore other options like DIY. I have read most of the posts in this forum about Tandem TSlim X2 Vs Medtronic pumps. my inclination is towards Tandem Tslim due to it’s integration with Dexcomm G6 but any feedback on this will be very useful.
Tandem plus Dexcom is the best currently available. Good luck!
My son was diagnosed with t1d at the age of 2 and is now 5. I have hope there will be a cure and I can not imagine dealing with what we go through on a daily basis without that hope. My endo has stated that in his opinion there will be a cure within the next 10 years. I believe that! There are many studies that are very close. Please continue to have hope. My family prays for that every day! We also are involved with the JDRF walks and staying positive is the best as the 24 hour care that is needed can be a huge struggle at times!
Also include TuDiabetes forum
Probably best solution is the interconnected CGM & Pump as an artificial pancreas. I am not ready to add the pump but will seriously consider when the interface incorporates Sensor and Pump into one insertion and electronics into 1 device. Coming soon??
Not that I know of. There are a number of roadblocks, including differences in replacement time, and proximity to insulin interfering with sensor. One of the next big technology changes, perhaps in the next two years, will be dual-hormone pumps. Those are pumps that deliver insulin when blood sugar is going up, or glucagon if blood sugar is going dangerously low.
Myself Krishna K. from India. My daughter 16 months old recently diagnosed with T1DM.
did u analysed/got any root cause of this problem?
Mail me email@example.com
@Kkkamal, hello and welcome to Type One Nation. Please be aware that there is NO CURE FOR Type 1 diabetes. I hope you have access to a medical team including a pediatric endocrinologist. Type 1 is TREATABLE, by injecting insulin, and many here have done exceptionally well over the years.
My grandmother was diagnosed in 1966 and the doctor told her 20 years for a cure. I was diagnosed in 1999 and I was told 20 years for a cure. My endo the other day said 20 years for a cure.
Two years ago I asked a different endo about a cure and I recorded his response (so I could share it with my grandmother after the appointment). I will type what he said: “I don’t believe there will be a cure, at least not in our lifetime. I DO, however, think that there will be technology that makes it so that you don’t have to do much - no input required from the user. That technology will basically be this artificial pancreas we hear so much about…but sorry, cure is unlikely if you ask me. At least in the sense that everybody thinks - if you’re thinking a shot will cure all, I beg you to change your way of thinking. Stop thinking “cure” and start thinking “technological management”. I know it’s a bummer to hear “no cure” from a doctor, but I’m being realistic. Remember, if you have something that keeps your blood sugar level all day and really requires no input from you, that is pretty close to a cure, even if it might not be the type of cure you’re looking or hoping for.”
I also wanted to add this: I brought a friend with me to try on wedding dresses a few years ago. I quickly got my pants down while maneuvering around the Pump tubing and then I tried on dresses with the pump attached to my undies. The thing about women’s underwear and the pump is that the pump pulls your underwear down because it’s so heavy, and often when you bend over with the pump clipped to your underwear, the pump falls off, so you have to hold onto it while bending over. The way I tried on dress after dress using one hand (remember, my other hand is holding onto my pump) made my friend ask “Does that ever get old? Having to pull your pants down like that? Or having to hold onto that machine and attempt to dress with one hand? You look like a total pro, but dang, it looks so annoying.” My response: “does it ever get annoying having two legs?”
As much as I would love a cure, I have become so used to this disease that it doesn’t even phase me anymore. At some point you’ll stop thinking about a cure and it’ll just be a way of life. Don’t get me wrong, we all still hope for it and wish for it and think about it, but I think we are all so caught up in our lives and diabetes management is just a small part of a big, colorful, adventurous, glorious life that we all build for ourselves.
I don’t know if you’ll see this response because it’s been so long, but that was a totally awesome post, and I am absolutely sharing it with my 11-yr-old daughter. Seriously, thank you for being such an awesome role model!
She just started on Omnipod (when she chose it, they were saying Horizon would be out by now, but that was before the pandemic; now they’re saying Jan. 2021), but it’s clear she needs the integrated CGM technology to make automatic adjustments, especially while she sleeps, and I don’t want to wait until January. We’re fighting with our insurance company to switch to Tandem for its Control IQ (they say it’s “not medically necessary,” to which I say something unprintable). My daughter wants the Tandem now, too, but she IS worried about things like where to put the pump and how to manage the tubing, and this post of yours is fantastic on that point. Thank you so much!
One job of the insurance company is to throttle expenses. They do so by challenging the necessity. Sometimes an escalation is necessary. You can begin an escalation by getting the “doctor in charge “ typically an endocrinology specialist, to write that it’s necessary. Once written this puts the insurance company at risk and liable, in other words, gives you the leverage to get what you want.
You have to do what’s right for you, sometimes you need to go softly, other times, well, to to use a war quote “Damn the torpedoes! Jouett, full speed! Four bells, Captain Drayton!”
Thanks for that. We’ve done the letter of medical necessity already, got rejected at a second round, and now we’re doing “peer review.” The next step after that is an appeal. Just keep your fingers crossed for us!
Hi. I’ve been pumping for 20 out 30 years now. The tubeless Omnipod is a very new addition to the pump family, so I’ve always been used to tubing. Every now and then I snag on a doorknob but have never yanked it out. I’m pretty open about my diabetes so I often clip my pump to my waistband. People don’t seem to look and I can’t recall the last time anyone asked so maybe it’s become somewhat familiar. As far as other placement I sometimes tuck it in my cleavage (I find sports bras work best) or on the bra band under my arm. There are also pouches you can buy that you can wear under clothing (like a security belt) to carry it in as well.
I’m glad my post was able to help you and your daughter. I was diagnosed at age 9 and I was one of the first kids on the insulin pump. I spent 3 days in the hospital getting put on the pump, I don’t think they do that anymore? Anyway, my advice for somebody fighting with their insurance company is to get a very good and supportive doctor. Many times over the years I’ve had doctors who have told my insurance company that a new pump is medically necessary, even though I didn’t need a new pump and really just wanted it. It disgusts me that of all the people, children aren’t immediately approved for life-improving technology like sophisticated pumps and CGMs. Children can’t drive, but somehow we expect them to monitor a disease that is literally all math. The enormous size of diabetes management should be reason enough to alleviate the stresses from kids. Much luck to you.