My daughter was just diagnosed 4 weeks ago. We are eager to learn as much about easily and effectively managing this disease. Our dr has given us the go ahead on a pump, but has mentioned nothing about a CGM. From what I've read, it seems the most valuable tool in anticipating your next move. Can someone tell me if there is a reason to wait? We are testing her overnight, but we are all tired. It just seems like this would give us all peace of mind. Should I be pushing her dr on this?
There should be no reason a insurance company would refuse a pump but it can be a little tricky when asking for a CGMS.
I'll put it a diffrent way...4 weeks is not much history when it comes to providing a medical necessity letter.
A pump will give you the ability to deliver diffrent amounts of basal insulin throughout the day and it's the gold standard for insulin therapy. A CGMS is going to take some of the mystery out of tracking actual BG...but I can't say it helps me get any extra sleep...It will always be hard work, there are no magic beans.
The most important thing to consider is what does your daughter think about all of this...;-)
I'm amazed at how fast people are put on pumps nowadays...
Hi Jessica Nice to meet you and sorry that you have joined our merry club.
I think its great that you are so proactive and want to learn as much as you can. That is the perfect attitude. A few things I want to add. MDI is the cornerstone of T1 treatment and I believe every T1 needs to understand how MDI works for them. In the real world pumps breaka and sometimes it takes days to get a replacement. Please make sure you and your daughter understand MDI.
A pump is likely a great choice for your daughter as I bet she requires a minute amount of insulin that is difficult to dose on MDI. I had to take “pump classes” at my endo before I got a pump and I hope you and your daughter will have to as well. Pumping is still quite a bit of work, but a lot of diabetics prefer it to MDI.
I am not sure what standard of care is for an 8 year old T1. I would suggest you talk to your MD about CGMs and see what their opinion is. While my CGM allows me to maintain better control, it can also be quite annoying. It is another device, another thing stuck in my body and another thing that is beeping at me. It can be stressful. But, I do believe it helps me quite a bit. Your MD may be concerned about diabetes overload. Going from diagnosis to pumping and a CGM within 3 months would make my head spin, I can only imagine what that would be like if I were 8!
I have tried both the Minimed and Dexcom CGMs. I think CGMs can be excellent tools and I know a lot of people absolutely love theirs. For me, the cost and "real estate" issue just didn't make a CGM a win for me. But that's just me.
CGMs are not 100% accurate. When I tried one, I was barely able to get the darn thing to be accurate 50% of the time. Now, they tell you that, with a CGM, you shouldn't dose insulin off your readings. I found this easier said than done. Laziness would set in and I would find myself glancing at the screen and bolusing based on what the CGM said. Bad idea. I was often 50-70 points off.
With CGMs, you also have to still test using finger sticks. This can add up quickly because the sensors and test strips are not cheap (even with some of the best insurance in the world, which I'm fortunate to have). Out-of-pocket costs add up quickly and I would just prefer to have more test strips, as that method of checking is more accurate.
Real estate is another issue. If your daughter starts pumping too, it's easy to quickly eat up all the good real estate on her body. If your daughter wants to be able to pump for years to come, she needs to carefully preserve her sites. Scar tissue WILL start building up and this leads to poor insulin absorption. For me, pumping is a necessity, so I want to save all my precious real estate for my pump sites.
In addition, the adhesives will really get itchy in the summer. The less skin tac and adhesive I can have on my skin, the better.
Bottom line - for me pumping and using traditional blood-glucose testing methods (Yes, even those middle-of-the night tests) are the safest and best thing FOR ME.
I think what combination of devices you decide to use should be based on what works best for you and your daughter. She may not like the pump but LOVE the CGM and decide just to use that. Or vice versa. Or she may decide that both are invaluable. Everyone is different because of their lifestyle and preferences. I would recommend you try it all and see what works best. The best thing about all this technology is that it's not permanent.
Hi Jess, I am always in awe of the parents of T1's on this site because you are super-moms in my book.
I agree with the others that everyone's experience and journey is a bit different. I stayed on MDI for 25 years because it was working for me and I didn't like the idea of being attached to tubes on a pump. But I was diagnosed at the age of 27 so I didn't go through this experience as a child.
I'm now on a pump (OmniPod) because old lady hormones created the need for me to be able to change basals often. I am also on a Dexcom cgm because I have developed some hypo unawareness and find the trending information invaluable.
I agree with Capin that all Type 1s need to be comfortable with MDI. For me, my long term use of MDI made moving to a pump not a big deal at all. You will hear that there is a huge learning curve with a pump. I did not find much of a learning curve at all because the pump operation is not difficult and I already knew the basics of carb counting and how insulin works from being on MDI for so long.
My endo told me that it is more difficult for people who start on pumps right away because they are learning the diabetes part (carb counting, insulin activity, dealing with hypos) *and* the pump part all at the same time. Easy to be overwhelmed, I would think.
For that reason, I would probably wait on the cgm for now. My CDE suggested I get used to one then try the other. I was struggling with hypo unawareness and lows so I went on the Dexcom cgm first. Months later, after I was comfortable with the cgm then I went on the pump. I do not think I could have handled learning how to use both at the same time.
I like to say that I have a love/hate relationship with my Dexcom but I would never give it up because of my hypo unawareness. The trending information is worth gold to me; it makes the process of setting basal patterns so much easier to see at what time I start dropping or rising. It also alerts me when I'm dropping fast so I can treat before I have a serious problem. I can see when I'm trending down slowly so I know I need a few carbs to bump me back up. You just have to learn to use it so that it works for you.
Hopefully some of the parents who use cgms with their children will chime in this discussion but I can definitely see the peace of mind that a parent might feel if they could check a monitor at night and see how their child is trending. Remember it doesn't replace the finger sticks but it allows you to see what's happening between those finger sticks. And alot of parents would find that comforting I would imagine.
Agree 100%. I'm on Omnipod and Dexcom CGM as well. It provides me with very valuable information but you have to use it for what it is intended to be used for : trends and patterns. If you expect it replace your finger sticks you will be frustrated and disappointed.
I agree that it is best to get pumping for awhile and then think CGM. Doing both together could be cyborg overload :)
