Hi. As @joe said, the right dosage for him is what works to keep his numbers in his target range. Don’t be surprised that there will be done tweaking and adjustments - it’s something we all must do from time to time, and with experience he will learn to do it on his own. For now, follow doctors orders and report results so they can determine what adjustments need to be made.
There are posts on the forum about kids who started college soon after diagnosis and handled that along with their studies, so being at home with you and his mom to support him should really help him get settled.
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Thank You. I don’t think I’m too worried about him handling things. It’s me I’m afraid of! Since home, things are going well for now so I guess I just need to breath.
So last night I just started to look into continuous glucose monitors, Dexcom in particular. I know its early and until we go to our first doc appointment, I’m not sure when we can make the transition, but is Dexcom considered the best? I think someone may have mentioned a FreeStyle Libre as well.
Not that it matters, but I was trying to get a rough yearly cost of the Dexcom, but I find myself in rabbit holes in that while researching something I see a word or phrase that I have to look into, which leads to more reading and more reading. It easily becomes overwhelming and I have to stop.
I think with all of the adrenaline flowing around coming home and undertaking care solely on our own the enormity of my son’s situation is really going to hit me. Most of the time, reading the posts I feel encouraged, but some times its feelings of darkness and foreboding.
Ugh! I’d give anything in this world to trade places with him! He’s just a sweet, innocent, shy boy.
Well, it didn’t take long for the sense of foreboding to completely overtake me. We were going to go to the beach in two weeks, but it looks like that should most likely be on hold. In thinking of how much he loves going and was so looking forward to it, I totally broke down (not in front of him, of course). I guess the enormity of things has just hit. The first of may breakdowns, I guess.
Our diabetes educator told us while she was working with us to get him to the beach, but that just seems so daunting. We do stay in an apartment so we wouldn’t always have to eat out, which we are nowhere near ready for.
Hi Matt, my son was diagnosed almost a year ago, days before his 15th bday. It is overwhelming, heartbreaking, and unfair. For months after his diagnosis l cried almost every day. He also went through a period of anxiety, almost like PTSD. But here’s the good part - I can honestly say it gets easier. There are still challenges and frustrations, but with time and practice they become easier to manage. Getting a dexcom was a game changer. Being able to monitor his bg and set alerts to know if his bg was dropping allowed us to start sleeping thru the night again, and gave him freedom to get back to sports and hang out with his friends. The libre doesn’t have an alert option. Anyway, best of luck and hang in there!
Thanks for letting me know about the Libre and no alert option. That’s a deal breaker for me.
It never really crossed my mind about blood sugar dropping during the night as we thought we had the safety net of the overnight insulin. That makes the desire to get the warning system in place an even higher priority!
The next topic I’ll look for help in here is diet. I know I keep spilling questions about a wide spectrum of ‘stuff’ so if I should be putting questions in other places, please let me know.
I may have mentioned this before, but right now they have him eating 60-75g of Carbs with each meal. My son is a picky eater to begin with and not really a meat eater so I’m just worried about getting more proteins into his diet. We do have an appointment with a dietitian soon, but my look to schedule it sooner.
You’ll find a lot of different opinions on diet. For us, about 3 months in, we found that eating a lower carb diet helped tremendously in maintaining steadier bg. My son is also a picky eater. It takes a lot of time, but I make lower carb/higher fat and higher protein versions of his favorite foods. Pizza, cinnamon buns, garlic knots, empanadas, choc chip cookies and pancakes are a few examples. Google low carb anything and you’ll find recipes. I still make chicken nuggets but use Parmesan cheese instead of bread crumbs. I also found that If I put out plates of roasted veggies, or raw veggies, and don’t say anything, that he’ll pick on them throughout the day. If I say anything he won’t touch it. LOL. If he’s out with his friends he’ll eat what they’re eating, but for him, eating lower carb the majority of the time works really well. Follow doctors orders for now, but in time you’ll figure out what works best for your family.
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Just noticed your comment about the beach vacation. If your doctor says it’s fine to go, then go. Better to find a sense of normalcy, and you can always reach the doctors office if you need to. My sons dr encouraged him to get back to living his life as soon as he got out of the hospital, and 2 days later he was back on the pitching mound. A week after that my daughter and I were in Paris for her graduation trip. I was adamant about canceling, but my husband and son’s doctor convinced us that we needed to go and they would manage. And they did.
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The other thing we need to worry about with going to the shore, I guess with going anywhere is this freakin’ COVID. I wouldn’t want any of us, especially him getting a sickness on top of this, but that’s inevitable.
I’m Seventh Day Adventist and many in my denomination are vegetarians, although I am not. I cannot speak definitively but there are good choices of vegetable protein for him to choose from. You could check some vegetarian cookbooks for ideas, or perhaps guidelines for “going vegetarian”. Although he may not be doing that I just mention those as helpful sources to get you started while you wait for your visit with the nutritionist.
Enjoy the beach! You’re dipping your toes into carb counting and may as well enjoy the fresh air and water while you’re at it, if you’ll excuse the pun.
Check out the available diabetes trackers - mine is invaluable for counting carbs and everything else. When I eat at a chain restaurant I can pull up the dish and get the numbers I need - I’ve found it very accurate. If you don’t see exactly what you are looking for you can make the selections as best you can and correct if you need to (trust me, this is something we do all the time and you will get used to it).
Personally I might check out the Freestyle Libre before and during the beach trip, although you are wish leaning towards one of the models that has alerts. There may be some pre-auths and training required before you start on one of those, while the Freestyle may be quicker up front. I suggest starting early so you can get used to it and have a chance to check accuracy against the fingersticks you’re mastering - don’t expect them to be exact but very close (I’m comfortable with 10-15 points difference but that’s me). Anyway, it’s non-intrusive so you can see his numbers anywhere - no need to stop the car and pull over, or leave your sunny spot to find a restroom to do the deed. A quick swipe and voilà! Knowing how to do fingersticks is fine, but it’s not brain surgery and can be learned quickly. And as someone said a while back you could step into some more current treatment methods. Again, unfortunately no alerts with this one, but you don’t have them anyway and this could be your first foray into checking out CGMs. By the way, CGMs have separate receivers and some can link to your smartphone, so you don’t have to be on a pump to get the benefit.
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More great information! So, are there any diabetes tracker apps that seem better or best?
Also, another thing you said… “By the way, CGMs have separate receivers and some can link to your smartphone, so you don’t have to be on a pump to get the benefit.”
… got me thinking. Let’s say I want the Dexcom for the warnings, does that have to be coupled with a pump or could that be used just to monitor and still use injections until docs say a pump is a good idea? Dorie, I know you may not know that answer, but several others have mentioned Dexcom so hopefully they can chime in!
Re your questing about which CGM is considered the best: as with most “things diabetes” What is best is what works best for you - or your son in this case. I used a Minimed pump for years and was fine with it, but switched to the TSLIM (which uses Dexcom CGM) and have never looked back. That was before CGMs were even in the picture so I’ve only used Dexcom (and Freestyle). I encourage people to do their own research on accuracy, functionality, etc. as well as reading true user experience on forums like this one. From what I’ve seen here more people seem to have moved from Minimed to TSLIM/Dexcom, than vice versa. Dexcom week pair with both the TSLIM and Omnipod pumps should he choose pumping in the future.
As far as cost, see what your insurance policy’s coverage is. Some in fact may only cover one brand of pump or CGM, while others cover options. The nurse educator at my endo’s office handles a lot of the authorizations and knows quite a lot about how coverage for particular durable medical equipment such as pumps and CGMs goes with various insurances. Yours may be able to give you some guidance.
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@mawa316 there is a lot of tech and equipment to digest. Dex, Libre, and Guardian all allow you to use the CGM “stand-alone”. No pump required. Both Dex and Guardian allow a remote monitoring with alarms, but you will need a data transceiver of some kind. The Dex uses a cell phone, which must be physically on your child, and you can follow the CGM data on your cell phone.
if you are going to go pump and think that you’ll end up with a feedback then Dex talks to T’Slim, Guardian talks to medtronic (as of today). don’t try to learn all this all at once or you will get a headache.
It’s easier to get manufacturer data directly and read through each system and the pro/con for each system.
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@mawa316 Just one other piece of advice (I know you’re getting lots of info here so I’ll keep this brief)! Definitely don’t feel pressure to get your son on a pump right away. I’ve had T1D for over 10 years and I’ve never used a pump; I wear the Dexcom g6 and absolutely love it, but I’m still on daily insulin injections. I’m sure I’ll get a pump at some point, but as of right now I just haven’t felt a need. So it’s totally up to you and your son!
Also–if you’re looking into CGMs, I personally recommend the Dexcom. If you have any questions about it, feel free to reach out!
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Thank you all so much for the quick responses and great information. It is comforting to know that I get almost immediate feedback to my questions, concerns, etc. I know I’ll be all wrapped up in this for a while (for life, at least until he’s on his own - no, I guess for life), but I have to remember to make time to return all the favors here.
As far as the CGM/pump combo, as long as there are good, notifying CGMs that work independently of a pump, that’s good. My son has adapted well early on to the injections so there’s no rush for a pump at this point. We’ll weigh the benefits of a pump, but from what it sounds like, we’ll be moving in that direction as well, but again, up to him.
So, from this…
“No pump required. Both Dex and Guardian allow a remote monitoring with alarms, but you will need a data transceiver of some kind. The Dex uses a cell phone, which must be physically on your child, and you can follow the CGM data on your cell phone.”
… does this mean that the Dexcom doesn’t just send the notifications directly from it, but to my son’s cell phone (which will be on him if needed) and that is relayed to our phones?
Hopefully the manufacturers have literature they can send to us. Although early for us, I’m getting on this now.
that’s correct. The DEX transmits bluetooth, to the phone. The phone, which must be on your son’s “person” (physically located in a pocket for example) has an “app” that uploads data via cell or wifi, to the Dex server. Then you will have a Dex client app on your phone and you can watch blood glucose and set your own alarms.
Each sales team will come to you and demonstrate… that’s what they are paid to do!
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Great! The next question, how reliable are the various CGMs. What kind of failures do they hit? I’m guessing just typical phone issues. Dexcom sounds pretty reliable as its been mentioned several times, as have others so I feel good about looking at those.
some love them, some hate them. A CGM uses interstitial fluid, so the IG is correlated with blood sugar. there are compression failures (sleeping on a sensor) there are sensitivities with the platinum sensor worn in/under your skin, and there are adhesive sensitivities. For some people, CGM are wildly off, for others, the readings are .a great estimation of blood sugar. For still others, the CGM reading is delayed (it takes time for interstitial fluid to change when blood sugar changes), therefore if you are running, and you are dropping, it is very possible the CGM will not tell you your low, before you are actually low. (time lag) it will not tell you you have recovered because as you chew glucose, it’ll read low while your blood sugar is climbing. only defense here is experience and using your head, it will be required. hmmm I feel low but the CGM says “good” I wonder what that could mean… etc.
The CGM uses Bluetooth, so radio failures are possible. The transmitter works on a non-replaceable battery. the transmitters can fail unexpectedly.
I am an automation and technology person, so I don’t adore the CGM. However, it can be significantly better than flying in the dark. I guess I grew up in a time before CGM, or even blood sugar meters for that matter.
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I use Dexcom with my pump as the receiver but have occasionally used the handheld receiver which I found worked fine. If you go to Dexcom’s website https://www.dexcom.com/ you will find various links where you can get info, check out the apps, and get started if you so desire. As I recall Dexcom reach out to your doctor for a prescriptive, run your insurance benefits, etc. Training might be done by a rep or by your doctor’s office.
The current generation of Dexcom is the G6. Like the earlier version (G5, which is being phased out) it will track glucose levels. There are some very helpful safety features that work with a pump - very simply put they are to help against less and highs; however they are not perfect and the person must still do the work to help the system run. These are things you might look at later if you even want to pump. Lots of people do just fine with injections and might even prefer them - time will tell. There’s no need to rush.
BTW, since you are probably “nervous as a long tailed cat in a room full of rocking chairs” about how your son will handle BG issues, some of us on the forum had had diabetes for 20+ years before home BG meters came out. So don’t forget to breathe.
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So here’s yet another question related more to our current situation. I’ve read about checking blood sugar while he is sleeping. I guess since he’s been on the high side they didn’t have us checking. However it appears that his numbers are coming down and getting somewhat close to normal-ish range. I guess this is where the anxiety of lows starts? Also, I’m guessing we should soon be checking his blood sugar through the night?
They were checking it at 3ish during the night in the hospital just to make sure his long lasting insulin was working. As they’ve been changing his fast acting dosages, the long lasting dosage has been constant for a few days now.