I understand this is taking on a lot. Please know I’ve had T1 for 48 years and zero complications. The secret of continual control for me is every morning a 30 minute treadmill after breakfast. Since lockdown I added 10 min at lower rate. I do about 15 min yoga. At night we walk our dogs 30 min about 1&1/2 miles. I measure and weigh food. I’ve learned control comes from eating high fiber carbs 3-5 gram. If I eat extreme high fiber like over 5 grams it takes the food too long to hit my blood sugar. I eat the carbs with 20 grams healthy fat like avocados, peanut butter , nuts etc
and the combination of fats with high fiber carbs keeps spikes from happening. If I were to eat low fiber anything my blood sugar would spike and it’s a mess. Consistency doing the same exercise daily. That may be a lot to ask of a child but I don’t know any other way to control it. Hopefully he likes a sport. Maybe he can do other exercise rather than treadmill or just walk outdoors. .( of course Chicken, fish, tofu, turkey protein every meal, milk is like drinking sugar so I eat plain Greek non fat yogurt with my fruit)
I’m sure you’ve met with a dietician. I use a Dexcom, Omnipod pump has no tubing, Riley link is like an artificial pancreas.$150 and it regulates your blood sugars. It’s life saving.
Riley Link is NOT like an artificial pancreas. It’s a homemade device that turns the regular radio wave of the original omnipod into Bluetooth radio waves so the G6 transmitter can communicate with the pods. It is one piece of a very large and complicated puzzle to DIY looping. It is NOT a simple and cheap thing to do if you don’t have a mac. Speaking vaguely and nonchalantly about DIY looping with a parent of a newly diagnosed child is irresponsible and wreckless.
Did not mean to say it that way. Meant to say it’s the closest thing to an artificial pancreas So far. A mother who needs assurance that her son is safe and keep him from low blood sugars a RIleY link can help that so can a Dexcom. I haven’t had any close calls since Riley link. If I had a child with T1 I’d do everything to keep the child safe. Excuse me from not going into detail about the Mac. I’ve known of several children looping and it has kept them from danger. All of us want is to help others
and children don’t always take same precautions as adults. When I heard of Riley I ordered it next day. We did NOT have a Mac but we found someone who did and also was good at setting up devices like this.
Sorry if my words appeared irresponsible. I’d say a person with T1 for 48 years with no complications who does the work to stay healthY every single day is not irresponsible or reckless and referring a device to a parent I would think would be something a parent would discuss with Dr before getting a Dexcom, Omnipod or Riley Link. I spoke to my Endocronologist and she highly advised me to get a RIleY link. She’s a brilliant Dr & Professor
At a highly respected medical university medical center. She is Very Conservative and careful about advice.
Going forward I would re state: talk with a medical professional about getting a RIleY link
And read the literature before you purchase it.
$150 was not a huge expense for us.
It is NOT the closest thing to a pancreas so far. Tandem’s CIQ is a much better and simpler system, and so is Medtronic’s 780.
(edited by moderator)
@Jason1. Name calling and use of foul language is not conducive to a safe environment. The post was edited please refrain from directly accusing other members in this manner
OK. You’ll let all that nonsense from her slide? Whatever dude
I see you edited out the last paragraph about how that system she’s vehemently dying on the hill for is not FDA approved. I guess that piece of information isn’t relevant?
With all due respect to @mawa316’s intelligence - they are literally only a few days into diagnosis and getting started on the learning curve. I’m not saying it’s not important but maybe we can help them get through the first days and weeks first, and get into deeper issues of advanced technology a little later? I’m reminding myself as well, BTW.
Hi @mawa316! Welcome to TypeOneNation! I’m so happy you found this website. It’s a great place to connect with people who know what it’s like to live with T1D. I’m Abby; I’m 17 years old (18 next week) and I’ve had T1 since I was 7.
First of all–it’s completely normal to feel overwhelmed right now. Your whole world just got turned upside down… heck, I’d be surprised if you didn’t feel scared and confused. So take a little while to process those feelings and accept them. Don’t worry–you won’t feel like this forever.
It’s so great that you’ve already found this website, because as time passes, you’re gonna have questions. And you’re gonna make mistakes, too! A T1D diagnosis comes with a gigantic learning curve. When you do make mistakes, don’t beat yourself up. Learn from them and move on. And if you need help, please don’t hesitate to turn to this community for support. We’re here for you!
One thing that you may need to remind yourself of: This diagnosis is lifelong, yes, but it will not take over your son’s life. When I was first diagnosed, my parents worried that my condition would affect my ability to achieve my goals. Now I’m a straight-A high school senior and a varsity athlete. There are people on this site who have lived with T1D for well over 50 years and have lived amazingly successful–I hesitate to use the word “normal” because everyone, whether they have T1 or not, is unique and extraordinary–lives.
I’m sure there is more I should say, but I don’t want to overwhelm you with information. It sounds like you’re doing a great job researching! Please don’t hesitate to pm me if you have any questions or if your son wants a “T1D buddy”–I’m always more than happy to talk over email or video chat.
(Also, sorry for any typos–my blood sugar is pretty low at the moment, lol!)
@Jason1–while I assume that your intentions are good, I don’t think this conversation is appropriate or helpful for the original poster. This is a positive site and I wouldn’t want a new member to get a false impression! I think we’d all appreciate if you could keep the comments constructive and avoid calling anyone out. 
Oh, my. FWIW, I’ve used this site for five years (DD was Dx’d at 6; she’s 11 now) and this is the first negative interaction I’ve ever witnessed on it. Truly, the posters here are generous, patient, kind, and unendingly knowledgeable. There is more uplifting support on this site than you’ll find anywhere. It’s an amazing community, and I’m grateful for it all the time!
To your questions, we were no technology, all old-school (including using NPH insulin rather than Lantus, because there was no one who could help with injections during the school day, and NPH has a peak around lunchtime that compensated nicely) for years before getting a CGM, and then had just that for a good long while before adding a pump. Her A1C was always where the endo wanted it, she felt comfortable with the routine she knew, and we figured if it wasn’t broken, we didn’t need to fix it.
Plus, devices do break, and they freeze or get error messages for myriad unknown reasons, and they need electricity, and tubing kinks, and pumps get occluded, and a syringe/pen works fine during a power outage or on a week-long hiking trip and is pretty much bomb-proof as far as the physical delivering insulin part goes.
Everyone is different, and some people prefer shots to wearing devices on their bodies 24/7. Some high-profile athletes use shots. Justice Sotomayor uses shots. Lots of people have used both, including switching off from one to the other and back again: taking a “pump vacation” is actually a thing.
So this post is too long already, but I just wanted you to know that there are good reasons to master the no-tech, old-school methods first regardless, and if your son is managing well that way (which he will; you’re very new to this, and it DOES get better!) and doesn’t want to add devices, that’s okay, too. When our daughter wanted to switch, we did. And we may switch again. It’s all good.
Welcome. We’re sorry your son’s dealing with this lousy disease, but we’re awfully glad you’re here.
Thanks all for the good information and mentions of different technologies. I realize that stuff is down the road for my son, but I would like to get an ‘early warning system’ of notification in place for when he goes back to school in the fall. We don’t mind the old school methods at this point, but piece of mind when he’s out of sight will be good eventually.
I of course won’t jump into anything without doing my due diligence when the time comes.
We just got home from the hospital today and all is going as well as could be expected. My son has been amazing with how he is handling things so far. Has he gotten worried/upset at times, of course, but he’s seeing the effects of the dosage changes on his levels and is asking very good questions.
The only blip we’ve had was with our first two injections after getting home. There was slight leakage at the injection site. The long lasting insulin injection leaked a small drop, but I figured that was just because it was a larger dosage.
At the hospital, some nurses did some things differently and here is what we came away with. Pinch, stick, inject, wait a few seconds, remove needle, then release pinch. Some nurses said inject at a 45 degree angle, but that straight in at 90 was fine too. Then we read that larger doses should be should injected at 45, release the pinch before pushing plunger because the only purpose of that is to lessen pain or sensation of the needle stick, etc.
We didn’t see any leakage while injecting at the hospital, so I’m hoping this will straighten out quickly. If anyone has ‘leak proof’ tips, they’s be appreciated.
Thanks again for the help so far!!
As part of preparation before he returns to school you might contact the school nurse to see if there are any other kids with diabetes that he could connect with. I’m sure HIPAA would not allow them to give you their info, but they might be able to share yours if you initiate the request. Might be worth a shot. Also you probably want to look into putting a 504 plan in place so your son can get snacks as needed, check his numbers, etc. Parents on the forum can give you details about what it did and how it works - all I can give is the very vague info I just shared.
Once you’ve used the insulin it can usually be kept at room temperature. Just avoid temperature extremes.
Matt, you’ve received a lot of good advice, and I won’t add more. I was diagnosed at 14 without all the gizmos now available, and I made many mistakes. 55+ years later, I’m doing fine and have had a good life. My Mom also survived. You and your son will do fine because you care. As Dorie said, breathe. Your son will be grateful for your efforts and your love, and you’ll both have some laughs in the years ahead. Take good care of each other.
Dorie, great suggestions and my wife is a Guidance Counselor so the 504 plan will be in place. It would have been cool if she was a GC at his school!
Bob, thanks for the words of encouragement. My son has been absolutely unbelievable so far. Like I said earlier, he’s had his moments and will have many more in the years to come, I’m sure, but he’s doing his thing so far.
Speaking of laughs in the years ahead, he still hasn’t lost his sense of humor, that’s for sure. His mom was looking at pictures and saw a sign that said “Proud owner of a useless pancreas!” and he laughed harder than all of us!!
My biggest concern coming home was building a good amount of food choices for him so he doesn’t get sick of things. He’s a picky eater and really isn’t a meat eater so bolstering that part of his diet is part of the plan.
As far as the insulin routine, I’m not worried about that at all. We all check each other and he has that locked down.
I just realized or understood yesterday why we came home with such a wide/high acceptable range. I forgot about the low side of things. Until we could demonstrate that we have a handle on keeping his level fairly stable, it would have been dangerous to send us home in a true ‘normal’ range of 80-120 or so. If we slipped up somehow on the low side, big problems could result.
Hopefully, buy the time he returns to school we’ll be at the semi-semi-semi-professional level of knowledge/experience/etc. I’m really not all that concerned with his return to school, but that I’ll be a nervous wreck for a while.
Thanks again for all the thoughtful comments and advice!!
I’m not a vegetarian but started eating Mediterranean style the beginning of the year. I’ve always enjoyed that type of food anyway, and being in stay at home orders has given me a chance/need/reason to practice making it myself. I’ll never be on Top Chef out Chopped, but an inching away from being on Worst Cooks in America and overall enjoying my creations! I’ve needed to lose some weight too and it’s going down - in part from those food choices and in part because I’m eating out a lot less.
A nutritionist will be able to help him match his growth to his insulin and overall needs and his food preferences.
Hello Matt. To be honest, I haven’t read all the replies, but I just want to say as a parent of a 16yo boy diagnosed last year, I’m so sorry. This is a wonderful forum with a wealth of info from a lot of T1Ds who have lived very long and healthy lives and have so much insight. But for me as a parent, what I know you need to hear is that some day your mind won’t be consumed by this diagnosis. Your son will be able to enjoy a long and healthy life. You will grieve and that is normal so allow yourself to do so.
It’s been 17 months and I just now feel like I can breathe. I am a nurse with 25 years of experience and my husband has a Master’s degree and at diagnosis/DKA there was so much information it was like drinking from a fire hydrant. Our Endo and educators were amazing but we started with the basics and worked our way up. Right now, just let them guide you day to day. Don’t feel like you have to remember all the information people here are helping you with. First thing is get the Dexcom ASAP and then work toward a Tandem Tslimx2. These technologies make T1 manageable.
Now, take a breath and enjoy your son. Help him to recognize what works and what doesn’t for himself. Encourage independence as soon as possible. He will make bad choices at times and eventually he will realize it’s not worth the way they make him feel. Let him live as normally as before and don’t hover. He will make good choices and see the benefits of those as well.
My son is doing great and has amazed us and grown up so much. He is still not ready to be called “Diabetic” or for his diagnosis to be pointed out. But he is managing himself and that’s the goal before he leaves for the University of Alabama in 2021. We have to remind him at times that as his parents we worry and to give us grace when we seem too involved or offer advice unsolicited. We praise him and encourage him publicly, but we grieve privately.
Because of this disease our children will be stronger than their non T1D peers. I’m sure you are becoming well aware quickly that there is never a break. Adversity, planning, and decisions to be made constantly. It breaks my heart for my son and anyone who is touched by this. My family’s hope is in Christ alone, so we don’t have to struggle with fear. My prayer is that you guys take comfort in that as well.
Please reach out if you need support. The T1D community is amazing for sure.
Blessings,
Mollie
Thank you Mollie! It is a lot right now and I do find myself constantly talking about or mentioning all things T1/Diabetic so I try to steer attention elsewhere when I notice myself doing this around him. I just don’t want to overwhelm him. He seems to be doing well so far, but its very early in the diagnose, I know!
So my next concern is that they’re upping his insulin scale to get his ranges down and I understand that. So, the doses are increasing at each range of the scale. I’m just wondering and I guess this is probably different for everyone, but here’s the latest dosage amounts based on his level…
6 units, 8, 10, 12, 14, 16.
I’m just wondering if these are fairly high doses or understandable and that they may increase yet as well. Once his level gets down to the norm-ish of 80-120, will the dosages go down or will he always need the higher dosages, or what I’m perceiving to be high dosages?
I know its probably different for everyone based on body make up, etc, but its just the next thing that started to concern me.
Continued thanks for all those lending support!
hi @mawa316, Welcome to Type One Nation. The simple answer is: Whatever keeps his blood sugar in his target range is the correct amount of insulin. Too much and his blood sugar will be low, too little and it will be high. Please be aware it is VERY COMMON for him to start making insulin now after being in the hospital…This can make you nervous and many (myself included), need very little to almost zero insulin… for a little while. Test and adjust if necessary and stay in contact with the medical team. We can help with the support stuff!
Matt @mawa316, many, many factors influence what is the correct or proper dosage for a particular person. There isn’t a “normal” amount of insulin fitting a broad spectrum of people with diabetes. For instance, my total daily amount of insulin has varied from about 15 units to more than 100 units. Right now, the doctors feel that the suggested 6, 8, 10, … is what your son needs; probably will need to be adjusted when he is home and running around.
The “80 - 120” norm-ish was a range used as one of the tools to diagnose a person thought to have diabetes; used properly, this “test” was blood drawn from a vein after nothing had been eaten for 12 hours. That said, the 80 - 120 is a good place to be when checking before a meal.